tag:blogger.com,1999:blog-48264650698632987212024-03-14T10:43:59.963-04:00Grace Like RainMama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.comBlogger326125tag:blogger.com,1999:blog-4826465069863298721.post-42656248451152814452015-11-17T21:49:00.000-05:002015-11-17T21:49:21.263-05:00Raining GraceA lot has happened in my life since I wrote here. But then again, I'm sure a lot has happened in yours as well.<br />
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About eighteen months ago, I was a stay at home, homeschooling mother of 5 children, who gardened, canned, and took care of her babies and her husband. I was exactly where I wanted to be.<br />
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Now, I am a full time working mother of 5, two of whom are in the local public school, one of whom is in her second year at NOVA, and the other 2 are at home with a nurse. <br />
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And I am single.<br />
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I look around me at all that has happened, and I see how everything has crumbled, and I feel the confusion and anxiety coming off the children in waves. <br />
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And my eyes brim, and I hang my head, and my body slumps down, down, down...<br />
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All the way down until my knees hit the floor and the only way I can look is up. And in the looking up, I realize that in this storm that I am in, in this raging downpour, it is not just driving rain that is falling, but grace, as well. <br />
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Sometimes, the sun shines brightly, and I feel calm and capable and ready to face this next challenge, but sometimes, the weight is just too much to bear and my shoulders curve and shudder under the burden I carry. <br />
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And then somebody sends me a text, I'll pray for you. Grace.<br />
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or someone offers to take the kids on Monday mornings. Grace.<br />
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or someone comes and spends time with me, talking and listening, mostly just listening. Grace.<br />
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And I feel the burden lift a tad and I feel the sun and wind on my face again just a bit and I turn toward the Light and I remember:<br />
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I am not in this alone. <br />
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So I turn my face into the storm,<br />
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Because only in facing this storm head on can I truly feel the rain<br />
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Grace like rain.<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com2tag:blogger.com,1999:blog-4826465069863298721.post-18110717036139970842015-05-09T02:03:00.000-04:002015-05-09T02:03:11.220-04:00A Letter to My Oldest, On the Occasion of Her (Belated) BirthdayI remember it. <div>
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I distinctly remember that day at the end of April, and the 9 long months that went before it. </div>
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I was young, barefoot and in a yellow cotton dress, and you, well, you were snuggled up there tucked under my rib-cage right below my heart.</div>
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I remember the first day that I realized that I was pregnant. I was elated, overjoyed, and super excited. And the funny thing is that I wasn't even scared. I was ready for this new challenge, ready to tackle whatever it was that life would throw my way.</div>
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But like I said before, I was young. </div>
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You were my first, and while I remember certain details of each of your siblings' births, it is yours that is buried the most deeply in my brain. It is your birth, and your infancy that I remember every year when I wake up with the sun to the smells of spring and the songs of the birds. It is you I remember nursing in the wee hours, no matter who it is that I am currently rocking back and forth in the dark. </div>
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I remember your big feet and your crazy shock of hair that stuck up off your head like a cocks-comb. I remember seeing you playing on the floor sometimes and just reaching over to pick you up just because you were you and you were mine. I remember how I cried and called my dad the first time I cut your hair when you were 3 because it felt like such a milestone. I remember your first day of preschool, and your last. </div>
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And then things got complicated. We moved to Hawaii, and then back. And you stayed with your grandparents, and then here with me. And we went through really hard times, and we went through really great times. And I know sometimes it might not have felt like it, but you were always on my mind and first in my heart. And sometimes I didn't realize that what I was doing hurt you or made you sad. </div>
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But like I said, I was young. </div>
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And then we grew up fast, you and I. Jo was born, and then in quick succession, Gabriel, Jesse and Hazel Grace, </div>
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and suddenly, I'm not so young, </div>
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and neither are you.</div>
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And sometimes, no, often, I look back on some of the decisions that I made, and I cringe at the selfishness of them even though they were not intended to be selfish. I never meant to hurt you or make you feel alone, I was just trying to survive...get by...and find my way in this world. </div>
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So I guess in a way, we grew up together</div>
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Which isn't really the way it's supposed to be, and I'm sorry for that. </div>
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But now I see you, a talented young lady, with the world in front of you, and I would be a fool to deny that who you are is a product of the life you've lived, and I can't help but be proud of you.</div>
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You are who you are mostly not <i>because</i> of me or anything I've done, but rather, to a great extent, in <i>spite</i> of me and everything I've done. </div>
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So here you are, at the brink of adulthood, and I feel the time that I have with you slipping through my fingers like so much sand in an hourglass. </div>
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And the Littles feel it, too. As much as Jo wants to take over your room and your iPod, she's going to miss you like crazy. And who's going to find Jesse's shoes? And who's going to tease Gabriel like you do? And who's going to play the guitar with Hazel Grace? </div>
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And Daddy? Well, let's just not go there. I don't care how grown you may think you will get, you will <i>always</i> be his little girl...and don't you forget it. </div>
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And so you can sigh, and you can roll your eyes and you can 'Moooommmm' me as much as you want. I'm clinging to these last years that I have with you, and there's pretty much nothing you can do about it.</div>
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Over-protective? </div>
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Maybe. </div>
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But that's because you are beautiful, you are talented, you are intelligent, and you, my dear, </div>
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My Elizabeth, </div>
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Flesh of my flesh and heart of my heart, </div>
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You are loved. </div>
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Happy birthday. </div>
Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-31626404722031871582015-04-21T22:47:00.000-04:002015-04-21T22:47:36.256-04:00The Little White PillSunday of last week, as I sat in my Sunday school class and shared my fears and trepidation with the group gathered there, I found myself sitting with my hands on the table in front of me, fingers spread as if looking for balance and grounding there in the collective faith of those surrounding me. Prayers were raised and testimonies were shared, but my world still rocked and swayed, and when I pulled my hands back into my lap, I noticed that they left behind sweaty streaks. <br />
<br />
Earlier this week, I was doing better, but still nervous. I was afraid of what would come, and afraid of how it would feel to be giving my daughter, my painfully beautiful and vibrantly intelligent daughter, daily medication. Medication that would...what? What <i>would</i> it do? Would it dull her down? Would it change her personality? Would she be calmer, but at the same time then not be my vivacious, spirited little girl?<br />
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<i>Am I doing the right thing????</i><br />
<br />
But then, when it came time to meet with the psychiatrist to actually get a prescription, I felt calm and confident. This was good, this was right, this WOULD be a solution, if not this dose, this medication today, then we try again tomorrow. <br />
<br />
The little blueish square of paper bearing the script rode home with us in the front seat of honor, and as much as it tried to intimidate me, I wouldn't let it. It kept looking at me, in all of its papery paleness, but even as I kept with its antics out of the corner of my eye, I was able to carry on a conversation with my girl, such as it was. She was talking too loud, too fast and laughing too much to really participate in a 'conversation' but my 'Really?', 'Uh-uh', and 'Oh, my!' were for the most part properly placed in her ramblings. <br />
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And then we get to here: This girl, this mom, this glass of water, and this little white pill<br />
<br />
<i>This prayer, this hope, this fear</i><br />
<i><br /></i>
<i>This unknown.</i><br />
<br />
Her brown eyes set in her already beautifully tanned faced framed by her soft brown curls looked up at me confidently and trustingly. She had an expectant half smile as she picked the little white pill out of my hand with slender fingers that end in chewed off nails. She tipped the capsule into her mouth and washed it down with a glass of water, eyes on me the whole time. Then she set the glass on the counter, met my eyes once more, and ran off to play. <br />
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That was it.<br />
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As much as I can boldly say, 'My daughter has been diagnosed with early-onset bipolar', and as much as I can know in my mind that something needs to be done both for her sake and for our sanity, I admit that my heart was still in denial. <br />
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But isn't admitting that there's a problem the first step in the right direction? And so, pill bottle in hand, we timidly begin down this path,<br />
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A path that leads off into the great unknown, but a path that we know that we will not be walking alone.<br />
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com1tag:blogger.com,1999:blog-4826465069863298721.post-85939179280456662182015-03-27T08:00:00.000-04:002015-03-27T08:00:06.766-04:00ConvictedI stand here, shamed-faced at the foot of the cross. My hands are empty. I hold them up and look at them, turning them over to see the short-cut nails, the rough skin, the creased palms...the hands of a working woman, of a dish-washing-dinner-cooking wife, of a baby-rocking-clothing-feeding-bathing mama...<br />
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But them most notable thing about them, at least to me, is that they are empty. <br />
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I stand here, at the foot of the cross, with empty hands. Completely empty. I do not stand here with my children, I do not stand here with my husband, I stand here alone, with empty hands. <br />
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Because that's all I have. Nothing. There is no offering that I can give that's not already His. <br />
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The most valuable thing I have to offer, these children that I have, they're not really mine. Not really. They are on loan to me, entrusted to my care, but on loan to me, and here to fulfill the plan that God has for their life. <br />
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And my <a href="http://gracelikerain4me.blogspot.com/2015/03/the-smell-of-smoke.html" target="_blank">anger</a>, while perhaps understandable, is not justifiable, and not righteous. My anger, this anger that I felt at what I saw to be an injustice, was, in fact, a display of my lack of trust in God's plan for my children. <br />
<br />
And I am convicted.<br />
<br />
I know I have been talking about Beth Moore a lot, but this last lesson on Daniel really struck a lot of chords with me. In one of the sessions, Beth talked about how there are some lessons that we don't want to have to learn the hard way. Some lessons we should really just learn from someone else so that we don't have to do the suffering. And for me, this is one of those. <br />
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I need to commit to memory, and seal away in my heart, never to be forgotten, this truth:<br />
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My life, and the lives of my children, are in God's hands. He is in control, and I need to trust that.<br />
<br />
Period.<br />
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How can I doubt God's grace? Has He not saved me from myself? Did he not keep His hand on Jesse when he swallowed the battery, had a seizure and developed a heart murmur? Did He not keep Gabriel from being more badly hurt when he fell and needed stitches? When he got bit by the dog? Has He not watched over Elizabeth as she grows into a responsible young lady of whom any mother would be proud? Has He not given us Jo, who is fearfully yet wonderfully made? <br />
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<i>Did He not perform miracle after miracle over our sweet baby Hazel Grace?</i><br />
<i><br /></i>
And yet, I have the nerve to shake my fists at God and ask Him why?! Even after God proves to me again and again that He is in charge and that He is in control, I continue to fight and struggle and attempt to lay claim to that which I think is mine,<br />
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But in the end, I always end up here,<br />
<br />
At the foot of the cross<br />
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With empty hands. <br />
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And I am ashamed. <br />
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But the glory of empty hands is that when you finally let go of that which you should never have been holding on to in the first place, you are ready to receive the abundant blessings that God has in store for you,<br />
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And the glory of standing alone at the foot of the cross, in repentance, is that there is no buffer between you and the grace of God.<br />
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And, oh! How that grace does flow!<br />
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Today it flowed in the form of the cardiologist telling us that the irregular reading of the EKG was not supported by the echo that they performed on Jo. Her heart is perfect, each chamber its correct size, rhythmically performing its designed function. <br />
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Fearfully and wonderfully made. <br />
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So let me remember this. Let this close-call scare sear its way into my heart so that I never have to hover over the edge of the fiery furnace again. Let me have learned my lesson so that I don't have to go down this path again. <br />
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And let me wash myself in the waters of God's grace to get rid of any last smell of smoke that may be lingering. <br />
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And let me come up out of those waters not ashamed,<br />
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But with empty hands,<br />
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Lifted high.<br />
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<i>Thank you, dear friends, for your prayers and support. All is well with Jo and her heart. There is no explanation for the irregular EKG reading, which was irregular once again today, but the echo showed a perfectly formed heart. Hazel continues to get stronger every day. She is home and back off the oxygen. Her pneumonia is slowly clearing and her food tolerance is slowly coming back. </i><br />
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<i>God is good, all the time!</i><br />
<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-81215816161719025972015-03-26T08:30:00.000-04:002015-03-26T08:30:00.234-04:00The Smell of SmokeThe blood pounds in my ears.<br />
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My teeth are clenched.<br />
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I want to scream. <br />
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I want to throw something. <br />
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I want to break things just hear them shatter.<br />
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I want to pick a fight. I want to make you mad at me so that I can isolate myself and nurse my pain.<br />
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I am tired and can't sleep.<br />
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I am angry, and have nowhere to direct my fury. <br />
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I drive too fast; I brake too hard.<br />
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My stomach churns and I want to vomit.<br />
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<i>I haven't even gotten close to the fire, and I smell like smoke. </i><br />
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I bang the letters on the keyboard, forming words that will release me from this demon of fury, words that I know, in the end will wrap me back to where I belong, firm in my faith, pressing hard into His love and mercy.<br />
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But right now, I'm angry.<br />
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It was supposed to be routine. It was supposed to be just a check to get a baseline before prescribing meds. It was supposed to be an in-and-out, no big deal, five minute sort of thing.<br />
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But the little paper with the gash across the middle made a gash across my heart and made my world tilt at an crazy new angle. <br />
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The little lines on the paper were supposed to jog up and down in their jittery pattern uniformly across the page, but they don't. There's one rogue line that slashes through the others and leaps out of the norm and almost off the top of the page itself.<br />
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The doctor shows me this paper and says off-handedly:<br />
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<i>We got the results of the EKG back. There's an irregularity. You'll want to follow up with a cardiologist. There's a thickening of the wall of the right side of her heart. </i><br />
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I want to snatch the paper out of her hand, rip it up and throw it away. What do you mean, lady! There's nothing wrong with my child! You're WRONG!<br />
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I want to shout it at her, shake her, make her see it my way<br />
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But there's no point in shooting the messenger, so I calmly tuck the prescription for the follow-up exam in my handy dandy notebook, and force my feet to follow her footsteps out of her office and down the hall. <br />
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What does this mean?<br />
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I don't know. <br />
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And part of me doesn't even <i>want</i> to know. I want to keep my head in the sand and deny that this even exists. <br />
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But I can't.<br />
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As my youngest baby is upstairs coughing her way through her latest bought of pneumonia, this other child of mine, the curly haired girl who already struggles with a mood disregulation, is now stepping with me into the whole new world of cardiology. <br />
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And while her heart is the one that may be damaged,<br />
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my heart is the one that hurts.<br />
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I know from my latest Beth Moore study on the book of Daniel, that there are 3 ways to be delivered from this fire:<br />
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We can be delivered <i>from</i> the fire, i.e. we could find out it's nothing at all and the reading was wrong,<br />
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We can be delivered <i>through</i> the fire, i.e. we could find out it's something that we can manage and live with,<br />
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or<br />
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We can be delivered <i>by</i> the fire, which is a place a never want to think of going with my children.<br />
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I take a deep breath. My heart rate slows, my blood pressure lowers, I stretch the cramps out of my fingers and I realize I've been biting my lip. <br /><br />
And as I stand here at the lip of the opening of the firey furnace, and I peer down into the flames, I hope and pray that we have the opportunity to just turn around and walk away from this. I hope that the cardiologist will tell us it was all a mistake, that it all means nothing and that there are no worries. But I know that if we are forced to make that leap into the opening of this scorching furnace, if we have to head down the path of diagnosis and treatment, we won't be the only ones walking through these flames.<br />
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I can't fight this, whatever <i>this</i> may be. I can only turn the page on this new chapter in our lives, smooth the blank page,<br />
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and turn the pen over to God, and know that He will be beside us, all the way, whatever tomorrow may bring.<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-82127401695527486392015-03-16T15:54:00.004-04:002015-03-16T15:54:41.631-04:00It's Monday!Really, Hazel Grace? That innocent look on your face doesn't fool me!<br />
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But I must say that while of course I am glad the weather is nice enough to hang the diapers out, I am ECSTATIC that I now have 2 helpers to get it done!</div>
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And Hazel IS trying to help clean up...</div>
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-3946371899444253592015-03-06T14:45:00.000-05:002015-03-06T14:45:20.635-05:00DreamingSweet baby,<br />
Oh baby of mine<br />
Of what do you dream<br />
In your sleep so sublime?<br />
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-65966000476083528592015-03-02T00:19:00.002-05:002015-03-02T00:19:35.002-05:00Every Good and Perfect GiftA friend of mine was telling a group of us about a friend of hers who was very blessed with material things. She then went on to say that she was also blessed with two perfect and perfectly behaved children. <br />
<br />
And this got me to stop and think:<br />
<br />
If this woman is 'blessed' to have two 'perfect and perfectly behaved' children, then am I <i>not</i> blessed because my children are not all 'perfect' and 'perfectly behaved'? <br />
<br />
Am I not blessed because I gave birth to two children with special needs? Are we, then, as a family, not fortunate? Not beloved? Not chosen? <br />
<br />
But James 1:17 states clearly:<br />
<br />
<i>Every good and perfect gift is from above, coming down from the Father...who does not change like shifting shadows. (NIV)</i><br />
<i><br /></i>
Now, I am going to go out on a limb here and say, if every good and perfect gift comes from the Father, then I choose to believe that every gift from the Father is good and perfect. <br />
<br />
We cannot dispute that fact that our children are gifts, and from where else do gifts such as these come except from the Father? <br />
<br />
Which to me means, dear friends, that my children, with all of their struggles, are good and perfect, designed as they were intended to be designed, with life, beauty, and a purpose,<br />
<br />
and so are yours. <br />
<br />
This doesn't mean that every day will be a perfect day.<br />
<br />
This doesn't mean that bad things won't happen.<br />
<br />
This doesn't mean that they won't make bad decisions sometimes...a lot of times...seemingly always.<br />
<br />
And it certainly doesn't mean that it will be easy.<br />
<br />
But it <i>does </i>mean that we are blessed.<br />
<br />
All of us, with our perfectly 'imperfect' children,<br />
<br />
Are blessed, most definitely<br />
<br />
Blessed. <br />
<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-21281582673304600582015-02-27T01:43:00.000-05:002015-02-27T01:43:00.061-05:00Oh, Happy Day!I can't believe it's finally happened! After 19 months of it, it's all gone! All of our tanks, our puffing dragon of a oxygen condenser, the pulse-ox...all of it GONE!!!!!<br />
<br />
No more tubes snaking through the house! One fewer beep in the night! No more tape on her chubby little cheeks! <br />
<br />
Hazel Grace has been DC'ed from her supplemental oxygen!!!!!<br />
<br />
Moses, our DME driver, came by this morning and picked it all up! I was so excited! <br />
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Next to go: the feeding pump and IV pole!<br />
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com1tag:blogger.com,1999:blog-4826465069863298721.post-67726544972302505352015-02-27T01:34:00.001-05:002015-02-27T01:34:13.876-05:00Finding FocusI walk laps back and forth past the coffee dispensers that are perpetually set up at Trader Joe's with my loads of crates of cheese and flat carts full of boxes product that need to be put on the shelf.<br />
<div>
<br /></div>
<div>
I glance at the clock. It's <i>only</i> 6 PM, and I know that I will be here at least until midnight. I'm running on little sleep because we've been working late, I haven't been able to get to sleep when I get home, and I've been getting up early to get people to where they need to be. There's no two ways about it; I'm tired. I can almost hear the coffee calling out to me, but I turn a deaf ear and continue on my path</div>
<div>
<br /></div>
<div>
Because it's lent, and this year, I've given up coffee. </div>
<div>
<br /></div>
<div>
Last year, it was sweets, but this year, with this job that keeps me up all night, I chose to give up coffee. </div>
<div>
<br /></div>
<div>
But why? </div>
<div>
<br /></div>
<div>
A group of women at our church are going through Beth Moore's Bible study on the book of Daniel called <i>Lives of Integrity, Words of Prophecy </i>(Lifeway Press, 2006). In the study guide, Beth has been talking a lot about the fallacy of building ourselves up and directing the glory of our lives toward ourselves rather than the One who created us, and the dangerous temptation of pride. She talks about how pride is a state of mind and how we can become as proud of our sacrifices as we are of our worldly goods and successes. </div>
<div>
<br /></div>
<div>
In Day 1 of Week 4 in the study guide, Beth said that one day she was talking to a friend of hers and was embarrassed to admit that she had never participated in a certain 40 day fast that so many others had. And her friend answered her and said that she had rarely seen anyone come from a 40 day fast who wasn't sooner or later proud of it. </div>
<div>
<br /></div>
<div>
Ouch. That hit home. </div>
<div>
<br /></div>
<div>
Why <i>am</i> I giving up coffee? </div>
<div>
<br /></div>
<div>
I guess the proper answer would be that I am withholding something from myself so that when I feel a craving or a desire for it, I remember the suffering of Christ and lean on Him through prayer to help me get through it. And for many, that is exactly what they are doing. And it works for them. </div>
<div>
<br /></div>
<div>
But I think that the real truth for me in this is that I am not the one who's suffering! I don't depend on coffee as an everyday thing to get me through, I just use the caffeine to get me over a hump when I know that I'm just too tired to really function well. So, in reality, it would seem that it would be those <i>around </i>me who are suffering because I am being short or snippy with them because my eyes are burning from pure lack of sleep! Otherwise, I only drink coffee because I enjoy it. </div>
<div>
<br /></div>
<div>
And do I really have an ulterior motive? I often give up coffee or sweets or whatever for a period of time just to do it to remind myself that I control what I put in my body, and to keep my system from becoming dependent on any one thing. </div>
<div>
<br /></div>
<div>
So how is this bringing me closer to God? </div>
<div>
<br /></div>
<div>
And how do I, as a mother of 5 who works full time at night, <i>not</i> come across as sounding smug when I say that I am giving up coffee in this Starbucks-driven society? </div>
<div>
<br /></div>
<div>
So this year, I doing something different. Instead of focusing on <i>giving up, </i>I am focusing on <i>staying focused. </i></div>
<div>
<br /></div>
<div>
I want to focus on Christ's walk to the cross. I want to focus on sacrifice and giving. I want to focus on loving the people that I love. I want to focus on supporting my friends and showing compassion. </div>
<div>
<br /></div>
<div>
And if that means sitting down across from my husband, holding his hand and telling him I love him over a cup of coffee, so be it.</div>
<div>
<br /></div>
<div>
And if that means taking stock of my burning red eyes in the mirror in the bathroom where I've run for a minute's peace, then marching myself to the kitchen to get a jolt of caffeine so I can be kinder to my children, so be it. </div>
<div>
<br /></div>
<div>
And if that means sitting with you, my friend, at a banged up kitchen table commiserating over a steaming cup of joe so that you can feel supported, loved, and not quite so alone, so be it. </div>
<div>
<br /></div>
<div>
But I will do it with focus. It will be a conscious decision made with care, not just a paper cup of the stuff thrown back on my way into the backroom. So yes, I am cutting back, but I'm not saying no altogether. It will be planned and executed in a way that calls to mind Christ's walk to the cross, and His ultimate sacrifice so that I can keep the focus where it needs to be. Not on <i>my</i> sacrifice, but on <i>His.</i></div>
<div>
<br /></div>
<div>
His sacrifice that has given me life. A life to live, and a life to enjoy</div>
<div>
<br /></div>
<div>
A life in which to mindfully enjoy my coffee.</div>
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<br /></div>
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-7331857782442403542015-02-24T13:20:00.000-05:002015-02-24T13:20:11.037-05:00Breathing EasyI can still feel it, you know, a tinge, an itch, a tingle in my flesh in that spot where almost 19 months ago the <a href="http://gracelikerain4me.blogspot.com/2014/08/oh-how-far-weve-come.html" target="_blank">doctor drew his scalpel across my abdomen</a> to pull from my body the struggling form of our tiny daughter who had been nestled there under my heart for just 24 short weeks. <br />
<br />
My body has healed, and I am well, and she has grown into a 17 pound cruising little girl,<br />
<br />
but we both still bear the scars.<br />
<br />
I, the scar of a pregnancy ended too soon, of a baby not held in my arms or to my breast for too long, of an infancy marked with doctors' appointments and g-tubes, nasal cannula and syringes instead of sweet smelling baby skin next to mine while cuddling on the couch. <br />
<br />
And she, the almost 19 month old who is still learning to walk and doesn't talk, she carries scars of her own: the fear of public sink and paper towel sounds, because that always meant someone was going to do something to her, the desire to sleep in her bed, not in my arms, because that's what she was used to for so long, and the small round hole that holds the tube that gives her nourishment.<br />
<br />
But there is one scar, one trial, that can now begin to heal and fade. One sound we can begin to forget and have it only brought back when we hear a similar puff-and-sigh rhythm somewhere else and we have to go through our memory files to remember what it is that noise reminds us of. There is one set of tubing that we can give away, give back, give up, pass on...<br />
<br />
And one large tank that hung across my back for so long weighing me down at the same time it gave my little girl on my chest life.<br />
<br />
Friends, all of you out there who prayed over us and over our sweet baby Hazel Grace,<br />
<br />
Dear, dear friends,<br />
<br />
It is with great joy and utmost thankfulness that I tell you that Hazel Grace, our mirco-preemie, one pound seven ounce 24 weeker, has been discontinued off her oxygen!<br />
<br />
Yes! You heard right! Hazel Grace is <i>done </i>with the cannula! <i>Done</i> with the sighing condenser dragon that hangs out in our living room, and <i>done</i> with the oxygen tanks! She is <i>done</i> with cannula taped to her face, and <i>done</i> with tubes dragging behind her!<br />
<br />
I know that a lot of you have seen us around without her tubes and tanks, but it wasn't until she had passed a full month and a half <i>plus</i> gone through a cold without needing the supplemental oxygen that her pulmonologist <i>officially</i> took her off the oxygen. <br />
<br />
And on Thursday, I think the sun will shine a bit brighter over our house, and our house will feel a little bit lighter because Moses, our oxygen delivery man, will come not to deliver, but to take away!<br />
<br />
And what joy will be mine in the giving!<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-31892948279167080642015-02-23T00:46:00.000-05:002015-02-23T00:46:14.484-05:00What I Meant to Say Was...I don't want to be a super-mom. <br />
<br />
I never saw in the job description that I would have two special needs kids that completely blow out the window any parenting skills that I may have ever thought that I had. <br />
<br />
I never signed on to train to practically be a nurse just so I could care for my baby.<br />
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I never read in the fine print that mental issues will take over your life and that of your whole family. It was never explained to me that I would lose friends and push away family merely by giving birth to a child who has a mood disregulation.<br />
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I never thought to study pharmacology just so I could pronounce the names of the contents of my refrigerator and cabinet. <br />
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It didn't occur to me to set up a nursery with a special place for oxygen tanks and a plethora of syringes and tubes. <br />
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I didn't choose to have <u>The Bipolar Child</u> as my nightly read because it has a nice cover. <br />
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It never crossed my mind that I would learn to drive in DC by force because I would need to make the trek in and out of the city multiple times a month, sometimes more than once a week, with my baby in tow because she has more specialists than a cat has fleas.<br />
<br />
But here we are. And this is what I do. And this is who I am.<br />
<br />
And I am no more of a super-mom than you are. <br />
<br />
You, whose husband is in the military. <br />
<br />
You, whose son is far far away.<br />
<br />
You, who is starting working again for the first time and leaving your tiny baby at home.<br />
<br />
You, who tries to work at home while the kids tangle in the background.<br />
<br />
You, who struggles with too much on her plate, but not wanting to say no to anyone.<br />
<br />
You, whose mother is sick.<br />
<br />
You, who is in school and handles your kids on your own.<br />
<br />
All of you out there. All of you mothers and women and caretakers and givers,<br />
<br />
I am no more of a super-mom than you are. <br />
<br />
And I don't want that title, anyway. It's too much to live up to, too much to be. <br />
<br />
I just want to be me: a wife, a mother,<br />
<br />
And a friend. <br />
<br />
Your friend. <br />
<br />
I want to sit across the table from you, leaning on my elbows while sipping a cup of coffee, and listen to you. I want listen, and I want to affirm what you are doing, because you are doing a great work.<br />
<br />
And then I want you to listen to me, too. And all I want is for you to affirm what I am doing, too, and tell me that I, too, am doing a great work. I am not asking for answers, a solution, or really even understanding, just empathy, and a bit of affirmation, that's all.<br />
<br />
And so, ladies of the Monday morning Women's Bible study, if you are reading this, <i>this</i> is what I meant to say:<br />
<br />
By God's grace, I have the power to get up in the morning, and by God's grace, I have the energy to deal with the day presented before me. I am not a super-mom, but I serve a Super-God, and I am glad to be here.<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com2tag:blogger.com,1999:blog-4826465069863298721.post-35146061669220215952015-02-17T23:38:00.002-05:002015-02-17T23:38:35.085-05:00The Big Room Switch-a-Roo!It snowed here last night. I love the snow. I love the peace that it seems to bring on our house and our family. Even though we are kind of stuck inside, the quiet white outside seems to calm the kids, and energize me. <br />
<br />
Which is great because I have not had much energy lately. <br />
<br />
A lot has been happening around here. To make a long story short, here's some of what's going on:<br />
<br />
Elizabeth started classes at NOVA, our local community college, in the fall as a dual enrolled junior in home school high school/freshman in college. But being dual enrolled means that she can't apply for financial aid, and she is limited on the number of credits she can take a semester. She did so well on the placement tests, and tested into the highest levels of all the subjects covered, that we decided to graduated her now from high school so that she can take a full load of classes at NOVA and also apply for tuition assistance. That means that she can graduate from NOVA next spring with an associates, and then go on to a 4 year university, entering as a junior, to finish her degree. <br />
<br />
Hazel is doing really well. She is still very delayed, but she is progressing on her own chart, on her own time. She has been almost a month off the oxygen, and has even gone through having a cold without having to hook back up to it! Her big hurdle now is gaining weight and growing. She is almost 19 months old, and hovering just around 17 pounds. She's tiny, but with a HUGE personality! She pulls up and cruises, and crawls super fast all over the house, giggling when she knows she's getting into something that she's not supposed to. She has been evaluated for in home occupational and physical therapy, and has been approved for a special needs program at the local public school when she turns 2, which means she could start in September. If we choose to go that route, she will get her PT and OT there, but not here at the house anymore. If we choose to not send her there, then PT and OT will continue to come here, but mostly to train us (meaning me) how to work with her and then we have to do it on our own. And as much as I can't imagine sending a 2 year old Hazel off to school on a big yellow bus, I'm not sure that with everything else going on here, I will be able to keep up with her exercises and what she needs to continue to improve. I guess between now and then we will have a chance to see how it goes with PT and OT coming here to train me, and go from there. <br />
<br />
We have decided to do some major moves in the house. The final layout will be that Jesse and Gabriel will be downstairs into the big bedroom, Elizabeth is moving up into their room, which is really her old room, and Jo has moved into the tiny room that Elizabeth occupied most recently. Hazel is still with Jimmy and me in our room. We hope that this will help some of the issues we have been having with keeping things neat and organized, since most of the issue was in Jo's room with it being so big. It's been kind of a dumping ground for toys when the kids play, and the boys' clothes were in there, too, so it's been sensory overload for her. When we moved Jo into the smaller room, all she took with her was her bed, her dresser and her desk. We hope that minimizing what's in her room will also help to minimize her stress levels. So far, we have moved all of Elizabeth's stuff out of her room and into the living room and Jo's old room, and we have moved Jo into Elizabeth's room. So, as I am sure you can imagine, everything is pretty much a huge disaster at the moment, but I am hopeful that it will soon be sorted out. <br />
<br />
(Note that I said *hopeful*.)<br />
<br />
There are other things that are going on here, and some other stuff possibly brewing in the future, but for now, my toes and fingers are freezing, so I say goodbye for now, and I hope to be back on here much more regularly. I know I seem to do so much better when I write!<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-21692871727530447072014-08-01T12:28:00.001-04:002014-08-01T12:28:34.967-04:00Oh, How Far We've Come!A year ago today, in a hospital room not far from here, I lay dying. <br />
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My blood pressure was so low that I could barely breathe and the bleeding and contractions just wouldn't stop. </div>
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My mother sat in a chair at the foot of my bed, and my husband sat by my head. To keep her hands busy, my mom was knitting. What she was knitting, maybe neither one of us really know, but she was knitting, creating, while I, her youngest child, was dying. </div>
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The drugs they had given me made my mouth so dry I could barely move my lips, and my vision was blurry, so I could only sort of see out of one squinted eye. </div>
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I couldn't raise my arms or my head, and so I had to twitch a finger so that Jimmy would know that I needed some ice to cool my body that was burning me from the inside out. My hair was a matted mess on my head and my arms and hands were a web of wires and blown veins. </div>
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'I don't want you to be a hero', my mom said. </div>
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'I have life insurance', I said. 'Please take care of the kids', I said. 'Please keep them together', I said. </div>
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She nodded and knit, counting stitches, counting seconds, counting minutes. </div>
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The nurse had insisted that all was fine, while I insisted that all was not, and by the time the doctor came, it was almost too late. </div>
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Thirty to 45 more minutes, he said after the surgery. Thirty to 45 more minutes, he said, and neither one of you would have made it. The placenta was completely detached, he said. It fell off in my hands. </div>
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I could feel the stitches, I said. It hurt so much and I felt every prick and pull. Why didn't the anesthesia work? I asked.</div>
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It did, he said, but I couldn't stop the bleeding. You almost lost your uterus, he said, but I didn't want to take it. That's why it took so long for me to stitch you up. I knew you felt it, he said. That's why I couldn't look into your eyes. You would have seen my fear, and panicked. </div>
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That's how well we knew each other by then. Well enough to read the signs. </div>
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He prayed over me before the surgery. He prayed healing over me and steadiness of hand over himself. His eyes closed in pleading with God to please let this one work out before he stood over me and asked me why I was here. </div>
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He made me say it. I had to force the words out between cracked lips. </div>
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C-section. </div>
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He wasn't being mean, he was following protocol, you know, to be sure he cut in the right place and did the right operation. </div>
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And then the sharp blade bit into my flesh and through the small hole that he carved in my body, he drew out our tiny Hazel Grace. All one pound, seven ounces of her. </div>
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And that is where this story began. This story of life, instead of death. This story of joy, instead of pain. This story of celebration, instead of sorrow. </div>
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And we've come so far, Hazel Grace. You and I. We are a far cry from the limp bodies that the doctor prayed over. We are strong, we are healthy, and we are so very very blessed. </div>
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Happy birthday, sweet baby! May God continue to bless and strengthen you so that this is just the first of many many happy birthdays. Look forward, Hazel Grace, to the life that is ahead of you, and strive toward it. But don't ever forget, small one, where you came from. Don't forget how it all began. Hold in your heart all the prayers that have been said over you, and know that you are chosen by God and destined for great things!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA1ZfNGHvZaZjGwhz_N6yUPrmsw3o2sPP-TuywidaBOJ0dOssGKJzbZ_vBHA2ol2iWcVOBg9vJeqvFQNmEdOMFhvx4LDAXmauJZ5mrIA0m2psVqD4HyxwVr0B16fR1ioPYYkKillC6GSo/s1600/photo+(1).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjA1ZfNGHvZaZjGwhz_N6yUPrmsw3o2sPP-TuywidaBOJ0dOssGKJzbZ_vBHA2ol2iWcVOBg9vJeqvFQNmEdOMFhvx4LDAXmauJZ5mrIA0m2psVqD4HyxwVr0B16fR1ioPYYkKillC6GSo/s1600/photo+(1).JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel Grace, a few days after she was born.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrNO0yKgMByxURCiuRGRA2whn72TxQVYfc-gAiGDImFhAqhbmOko72knbpirMUCi77y3t-I-qHpXfZ59sz8Fxg-4GVmulkkNDTBFClmPCbxyyfZNMYptEYfw2zd4Qta2yVHMLSHNZW-80/s1600/111_5478.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrNO0yKgMByxURCiuRGRA2whn72TxQVYfc-gAiGDImFhAqhbmOko72knbpirMUCi77y3t-I-qHpXfZ59sz8Fxg-4GVmulkkNDTBFClmPCbxyyfZNMYptEYfw2zd4Qta2yVHMLSHNZW-80/s1600/111_5478.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel Grace, today!</td></tr>
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-3116039683677261022014-07-29T23:05:00.002-04:002014-07-29T23:05:51.061-04:00Meet Hazel, my TubieMy daughter, Hazel Grace, is a Tubie.<br />
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I didn't really even know what that <i>was</i> until recently, I'd say about a month or 2 ago. I mean, I obviously knew that she had a gastrostomy tube, and I knew that it was for feeding, because it's what I had pushed for so that she could get out of the NICU at the hospital. But when we brought her home for the first time in December, a mere 5 days before Christmas and a whole 5 months after she had been born, I was just kind of winging it. I had already been pumping breastmilk for her since August, and she already nursed a little bit in the hospital, so I guess I just figured that the tube was just a good and 'easy' way for her to be able to get the calories she needed to grow since she has chronic lung disease, which means she burns more calories in just breathing than your average baby, and so was not able to take in enough on her own to grow. <br />
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But I guess I never really realized it would go <i>this far </i>(whatever <i>that</i> means), and I certainly didn't know there was a <i>name</i> for it. <br />
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Hazel will be a year old chronologically this Friday, on August 1, but her adjusted age, the age she would be if she had been born when she was supposed to be born, and not 4 months early at 24 weeks, is 8 months, which means, by 'normal' standards, she 'should' be eating solids by now. <br />
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And she's not. <br />
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I guess you could say she is, kind of, but it's nothing worth counting calories for...it's a half a baby sized spoonful of sweet potatoes or a tablespoon of whole milk yogurt here or there, but nothing consistent and nothing worth noting. And while I am not completely negating what she is taking in orally since she does nurse well 2 or 3 times a day, and I know that every bite is one bite closer to oral, I think that I have come to the conclusion that Hazel Grace is not getting rid of her tube any time soon.<br />
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She's not going to magically start eating enough to maintain and increase her weight. And my milk production is going down because, well, hey. I've got 5 kids ages 16 years, 7 years, 4 years, 2 years and one year old. Two of them are special needs. Because of their needs, I have appointments weekly that I have to schedule during their prime-time, which is early in the morning. I home school the 3 oldest kids. I work from 4PM to 1AM full time and sleep less than 6 hours a day, none of which are consecutive, and I'm just flippin' tired and stressed and I've been doing this pumping thing for a year now and no amount of tea is going to change that. <br />
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And it's not that I'm jumping off the breastmilk bandwagon...not at all. I fully intended to pump and nurse for at least a year, and hopefully longer than that, but I am tired of hovering at the edge. I am tired of half-knowledge. I am tired of waiting, and I am tired of being tired and stressed about producing enough milk for my sweet baby Hazel Grace.<br />
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With feeding pole in hand, I firmly plant my feet and proudly stake my ground:<br />
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Hazel Grace, my sweet baby Hazel Grace, is a Tubie. She may not always be a Tubie, but for right now, she's a Tubie. And for me, that means that more than just milk needs to go down that tube so that we both have the opportunity to continue to thrive and grow...me as a wife and mother of 5 beautiful children, and she as the Tubie that is. <br />
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And so, with one foot (boob?) on the breast feeding bandwagon, I am also taking a flying leap onto the blenderized diet bandwagon. <br />
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So someone throw me a line, because I'm flying blind!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQP8HU9xay_mp4uXlwXQ3C7-qJHyEAChR1-54lH6mx73utW05ajS2ogB3K1Rw4kjWrrGC9M9gS886XeyzVyLl8AnSAsP12SHRWZO5JmkGPF9dj8cng-ZASDCq-ZUjfbj6W-SPL2cZzOs8/s1600/20140704_120150.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQP8HU9xay_mp4uXlwXQ3C7-qJHyEAChR1-54lH6mx73utW05ajS2ogB3K1Rw4kjWrrGC9M9gS886XeyzVyLl8AnSAsP12SHRWZO5JmkGPF9dj8cng-ZASDCq-ZUjfbj6W-SPL2cZzOs8/s1600/20140704_120150.jpeg" height="320" width="180" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hazel Grace...wearing her brother's cap because he wanted to keep the sun out of her eyes!</td></tr>
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-15588792317584163892014-06-07T02:17:00.002-04:002014-06-07T02:17:42.611-04:00UpdateAs I sit here at 1:45AM, everything seems possible. I look around my house which is a complete disaster right now, and I say 'meh, I can handle it!' I make plans for tomorrow: we will go to the Farmer's Market in Old Town early, then go play on the playground while Elizabeth is in her Kung Fu class, no problem! Be back by 1, eat lunch, take a nap and go to work at 4. Easy peasy! But that's because I have my energy jolt now, at 1:45AM, after the physical labor of climbing up and down ladders and hefting boxes. Tomorrow morning, however, will be a completely different story. <br />
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But I don't <i>want</i> it to be that way. I <i>want</i> to be able to give my best to the family in the morning and then work my hardest in the evening. <br />
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Which brings me around to being purposeful with my time and reconciling myself with who I am right now at this point in my life, and being sure that I am being who I need to be right now with each of my children. <br />
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Elizabeth is doing well. She has been a tremendous help during this time of transition from me being at home to going back to work. She is still plugging away at her schoolwork, and doing well with what she is doing. I try to let her get out and have fun with her friends, too, so that has taken a bit of balancing, and although it's still a work in progress, I hope that she knows how much we appreciate her.<br />
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Jo is still working through some things. We are still working with her on some aspects of her behavior that have held her back from her school work this year, but I am looking forward to testing her soon to see really where she is. We are not yet sure what we plan to do for her for next school year. There are a lot of things up in the air about that. More on that later.<br />
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Gabriel is just being a boy. I sometimes let him choose what he wants to do during his quiet time, and sometimes he chooses to spend it outdoors swinging and playing by himself. Last time he did this, he entertained himself for almost 2 hours. He found a hammer and screwdriver and went around hammering things. This was after he found a big stick and poked at the bugs and rotten fruit and veggies in the compost pile. He's such a trip to watch through the window when he thinks no one is looking. My going back to work has been hard on him, though, and I need to make time to spend with just him. Everyone else seems to get time one on one with me due to circumstances, but I have to carve out special time for him. <br />
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Jesse is doing his best to keep up with Jo and Gabriel. He is pretty much potty trained, when he wants to be. I find that if he has no pants on at all, then he uses the toilet well, but as soon as you put underwear on him, he pees in it. But putting a long shirt on him and leaving him barebottomed has lessened the amount of diapers that need to be washed, so I'm not complaining too much yet. <br />
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Hazel is doing well, too. She is an adjusted age of about 6.5 months (she is 10.5 months chronologically) and she weighs 5.9 kilos, which is about 13 pounds. She is still on the oxygen at .25 liters/min, and she still has her feeding tube, but she has hit some milestones! She can roll over from her tummy to her back now, although sometimes we still have to remind her how to do it. She also plays with her feet, which is another big milestone. We have been given the OK to start her on solids, which means mixing a little bit of rice or oatmeal cereal with her milk and seeing if she will take it off a spoon. We won't be putting it down her tube. She is still on pure breastmilk, which I continue to pump (!) and has been gaining weight well with that. She has actually been going to church with us, too! We packed her up and took her 3 weeks ago, and she did really well. That meant that Jimmy got to go to church, too, so we were all there as a family. It made such a difference for Gabriel and Jesse. No tears at drop off! Jesse kept telling his teachers, 'Daddy church, Mommy church, Baby Hazel church...' on through the whole family. He was much more comfortable in his classroom and played with the other kids very well. We also took Hazel to the park on Monday and took her for a walk. She really liked it and did well even though it wore her out and she was ready to get home into her bed when we were done. <br />
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We are working on weaning her off her O2, but even though her saturation doesn't go down when she is off the machine, her heart rate goes up since her body is not used to doing all of the work on its own. When she is off the oxygen, then the hours that we will have the nursing care will go down, but for now, she still has a nurse, and we have actually had the same nurse for about a month now. I thought that we were going to have to change again, but we have worked it out where we have one nurse Monday, Wednesday and Friday, and another on Tuesday and Thursday. We pretty much like them both, so hopefully it will work out and we will be able to keep these nurses for the foreseeable future. <br />
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And that, friends, is us in a nutshell. We are finding our new normal and slowly slipping into the new rhythm of life. Your thoughts, prayers, comments and encouragement are always welcome. No one ever said it would be easy, but my goodness! No one ever told me it would be this hard, either!<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-82757341619794438342014-06-01T02:32:00.001-04:002014-06-01T02:32:19.878-04:00How Many Hours in a Day?The question that weighs on my mind is whether or not the choices that we are making for the kids and their schooling are being made out of necessity or out of selfishness.<br />
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I want to homeschool all of the children. I really do. And I feel as if it is a huge failure on my part if we choose to send one of our children to school. I feel as if I am failing and as if I am being selfish by not taking the time and effort to make it work to keep them all at home. I feel like if I would just get up earlier, if I would just plan better, take more time, have more patience, be more organized, be stronger, more faithful, more trusting, more...more...more everything that I'm not, then I would be able to make it work. Am I being selfish by not pushing myself harder and getting more done?<br />
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But on the flip side, I look at the reality. I am a full time working mom. That is not my choice, but it is what I am right now out of necessity. I can not cut back my hours, and I can not redirect my energy from there to home because my job is very demanding both physically and mentally. It pays well and has great benefits, and I really do enjoy it, but it is very tiring, and I must go in well rested and at the top of my game or I will be miserable and in the end, probably lose my hours. And by working until 1 or 2AM, that means that I can't realistically get up any earlier than I do now, which is between 8 and 9. Even then, I am only getting about 5 or 6 hours or sleep at best, and by the end of my work week, I am exhausted, which just adds to the problem of dealing with a child who has a behavioral disorder and is physically and emotionally demanding as well. <br />
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And when you take 40 hours off the top of the week, and then you add in a little time for sleeping and whatnot, there's not much time left, and that small amount of time must be spread across 5 children and Jimmy with hopefully a scrap or two for myself as well. And Hazel having a nurse almost complicates things even more because I find that I leave Hazel to the nurse so that I can take time with the other kids and then I look back at the day and realize that I haven't spent nearly enough time with her...except, of course, on the almost biweekly trips to the clinics at Children's Hospital which tend to take up a whole morning, if not a whole day. And the laundry, shopping and errands still need to be done, too. <br />
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So as we move into this time of option searching and decision making for our children, I find myself at a loss of what to think and how to feel. I find myself in limbo land once again, fitting in nowhere and everywhere, and with tons of questions, fears and doubts, and no real answers. <br />
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But the good news is that it's church time tomorrow (actually, in a few hours!) and Hazel Grace will be going with us again. This will be the third week in a row that she's been able to go with us, and it's made such a difference to the other kids to *finally* have the whole family back together again at church!<br />
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God is good!Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-20543396893105460662014-05-31T03:02:00.000-04:002014-05-31T03:02:30.506-04:00A Mix of EmotionsI have been wanting to write on here...I really have. But I don't have time anymore to get in the computer and it's so tedious to write from here on my phone, but tonight I have news that I just HAVE to share.<br />
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Things have been bumping along. Work is going as welk as a fulk time night job can he expected to be going, and I have realized that a big key to our family's health and happiness lies in my being very intentional about what I do with my days off and how that precious free time is spent. And there is a fine balance between spending time with the kids, connecting with Jimmy (who I don't even really see at all on the days that I worm since he leaves for work before I get up and I leave for work before he gets home) and finding time for myself, too. I am still working on that balance, which is why I haven't written in so long and why I am writing at 2:40AM.<br />
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But today has been a beautiful and a rough day all at the same time. The child that we have been taking to the psychologist has a diagnosis, and even though I knew it was coming, it breaks my heart and hurts to know that no matter what I do, it seems that I will not be able to be the one to teach them and handle them here at home. And as much as I know that it's not my fault and that there is nothing that Jimmy or did or didn't do that caused this, I still feel like I have failed. Selfishly, that hurts my pride. Practically, it makes me sad to know that we all have a long road ahead of us and that my child, a child that I birthed and love and would give anything for, will have to deal with this for their whole life, and even though we will work through this and manage this, there is nothing that I can do that can take this away and heal the hurt that it causes.<br />
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But I k ow God can. And that is evident in the next piece of news I have to share...<br />
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Hazel can roll over now! I know this seems silly, but this is something that we have been working on with her for a while. She is now 10 months old chronologically, which is 6 months old adjusted age, and she has had a hard time with her core muscles due to her feeding and breathing tubes and her reflux not allowing her to lay flat. <br />
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But as the time comes closer to the day of her birth, and the memories of all that entailed flood back, I look at my baby, who's small for her age (a little over 12 pounds) and who is 'developmentally delayed' and I hear the echoes of all the prayers that all of you have lifted up for her, and I see just how far she's come.<br />
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And in that, I see that if God can take a 1 pound, seven ounce 24 week micro preemie and turn her into a strong and robust 12 pound baby, He can hold all of our family through whatever may come.<br />
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I may be completely in over my head and things may be careening totally out of my control,<br />
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But He's got us covered.<br />
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And in the sharing, I have found peace and so will now be able to sleep. So thank you for listening, whoever and where ever you are. You are important to me. Your prayers whispered over our family are felt and will have repercussions far beyond what any of us could ever imagine.<br />
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Thank you.Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-66530851879396170012014-05-07T21:41:00.002-04:002014-05-07T21:41:46.172-04:00A Time of Change<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I did not realize that it has been more than a month since I have
written on here. Time has been flying and the days have slipped away in a
blur of doctors appointments, evaluations and work.<o:p></o:p></span></div>
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<span style="font-size: 13.5pt;">Yes, work.<o:p></o:p></span></div>
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<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I have taken a full time position at Trader Joe's and work from
4pm to 1am five days a week, from Thursday through Monday, with Tuesday and
Wednesday off. <o:p></o:p></span></div>
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<span style="font-size: 13.5pt;">Needless to say, I am exhausted. <o:p></o:p></span></div>
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<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">There is a long story behind why it is that we, Jimmy and I,
decided that I needed to work outside the home, and I will not get into all of
that here, but let's just say that our backs were kind of against a wall, but
even though the job was taken under duress, it has been a blessing to our
family. <o:p></o:p></span></div>
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<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">But it has forced me to redefine myself and being at a loss as to
who I am exactly, has left me at a loss as to what to really say here.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I mean, where exactly do I fit in? I am no longer a stay at
home mom, yet I am with the kids all day. I am still a homeschooling mom,
but my days are filled with appointments for Hazel and for our other child who
is struggling. I am a full time working mom, and yet I am gone every
evening, and not in the carpool line to commiserate with other mothers who
carry a briefcase and work all day, nor am I a soccer mom carting my kids to practice
every evening. Birthday parties and playdates on a Saturday are more of a
reprieve for me to catch a few winks in the quiet of the car rather than a time
to sit around and chat with other mothers.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
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<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I have worked overnight before, so my body has adapted to the new
hours surprisingly easily and quickly, but it seems to have<span class="apple-converted-space"> </span><i>over</i> adapted so that even
though I am home most nights by 2am or shortly thereafter, I am wide awake,
hungry and ready to tackle the world at that hour, and then, come morning, when
I must drag myself out of the bed and face the day, I am an exhausted mess that
wants nothing more than to crawl into bed and pull the covers over my head.
If only I were ready to crash as soon as I get home! Then I
could get a good 6 hours of sleep by 8am and face the day relatively rested.
<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">And then, of course, comes the guilt. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">I know that what I am doing is necessary, but then I feel guilty
about actually enjoying it. And I<span class="apple-converted-space"> </span><i>do</i><span class="apple-converted-space"> </span>enjoy the work. It is relatively
mindless, but it is actually an area where I excel. Contrary to the
testament of my house and the mess you will find inside, I am actually a very
organized person who pays attention to detail, which is exactly what a place
like Trader Joe's, with its tight spaces and multiple products, requires.
You have 7 boxes to fit into a 5 box space. How do you manipulate
the items surrounding it to make it fit neatly and accessibly? How do
make each customer feel special? How do you keep the salads fresh?
Empty meat case and chickens in the back cooler? Bring. It. On.
I will check those dates, toss that chicken on the shelf, bag those
groceries and align those boxes with my eyes blindfolded and my hands tied
behind my back all while carrying on a cheerful conversation with anyone in
earshot, (most of whom come up past my waist)!<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">But then it is my family who must deal with me while I am tired
and trying to pull myself together. It has not been until this week that
I finally have enjoyed my 2 days off. I purposefully went to bed 'early'
when I got home on Monday night (early Tuesday morning) and I woke with purpose
and a list of things to get done on Tuesday. I powered through the day
without a nap so that I would be able to go to bed at a reasonable hour on
Tuesday night and did it all again today. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">And so, here I am now. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">But the guilt does settle over me like a heavy mantle.
Jimmy gets up in the morning with the kids, passes Hazel off to the nurse
when she wakes up, and then leaves to walk to work. I get up at 8 or 9,
and then do what needs to be done until about 2, when the littles take a nap
and I try to catch a wink or two as well. Then, it's up at 3 to get my
lunch together and throw on my t-shirt, hook my box cutter on my belt, and get
to work by 4. Then Jimmy walks home at 5, and the nurse leaves and he and
Elizabeth take over and get dinner and everyone into bed. And all of this
makes me wonder if I'm not just escaping. If it's ok to enjoy my work
when it means leaving everyone else behind.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Is it even ok for me to be working<span class="apple-converted-space"> </span><i>at all</i><span class="apple-converted-space"> </span>when it means not holding my baby as
much as I would like? When it means not seeing my husband for sometimes
days on end? When it means leaving Elizabeth to take care of the kids
when she 'should' just be enjoying being a teenager...<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Is it ok? <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">But the proof is in the pudding, as the saying goes. Hazel
is thriving, Jimmy and I are more purposeful in carving out time together and
in enjoying each other's company when we have it, the child that we have been
having such issues with seems to be responding well to therapies and
consultations, and Elizabeth makes me more and more proud of her every day as
she makes good choices in her friendships and in her faith walk. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">And so I square my shoulders, tighten my grip on the bag of my
ever-present breast pump, and step into the field of vision of the laser eye
that swishes the doors open to the rustle of bags and the chatter of people
over the muted ding of the registers, and breathe in the familiar scene that is
chaos that must be returned to order before my day is done, <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">And I breathe out with a sigh of acceptance that<span class="apple-converted-space"> </span><i>this is me<span class="apple-converted-space"> </span></i>and<span class="apple-converted-space"><i> </i></span><i>this is ok. </i><o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Because what I do for a season doesn't define me...<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;"><br /></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">Does it?</span></div>
<br />
<div class="MsoNormal">
<br /></div>
<br />
<br />
<br />
<br />
<br />
<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com1tag:blogger.com,1999:blog-4826465069863298721.post-82757158790927413662014-03-25T20:21:00.001-04:002014-03-25T20:21:12.871-04:00A New JourneyI have debated about what to say about this. I have swung back and forth between keeping family stuff of this sort firmly in the family, and reaching out through these words and this media for much needed support and advice while maybe perhaps touching someone else who may be going through the same thing. <br />
<br />
The thing is that there are different kinds of hurts, different kinds of special needs. There's the kind like Hazel's, the kind that you wear outside of yourself. The kind that everyone sees, and knows, and acknowledges. It has tubes and wires, it has numbers and patterns, a name and predictability. It's small and sweet, undeniable, and understandable by most people at least on some level. Everyone says: Look at the baby! She's so cute! How far she's come! What a blessing! <br />
<br />
And then there's the kind that is burrowed deep inside. The kind that hurts, but not like tubes running into tummies or leads and wires making diaper changing hard, but the kind that hurts your heart. The kind that is painful, hurtful in and of itself. The kind that effects behavior, offends, and can make fun times not so fun. The kind that has no reason, no explanation, and usually, no cure. <br />
<br />
And so, while Hazel grows and thrives and gets round and chubby on her feeding tube, and while we talk with doctors about when she may get to be off her oxygen and when the tube may come out (probably not for a year or more), we are at the same time beginning the slow and often times painful journey to find out how to help one of our other children with the issues that they are struggling through.<br />
<br />
And for the sake of keeping it real, I am going to share parts of this journey here. Because this child's struggles are no more nor less than Hazel's, they are just different. <br />
<br />
I guess you could say that we've always known that this child would have a hard time of it. Things were rough from the very very beginning, but I guess I never thought that we would be heading down the path that we now seem to be barreling down. The counselor has finally said, 'I can't help enough. You need to go to the next level.'<br />
<br />
And so, it is with a heavy yet hopeful heart, we head out tomorrow to start the process of full evaluation. Heavy because I don't want to be heading down this road. Heavy because it's finally gotten so bad that there's no peace in the house. But hopeful because perhaps this is the first step toward improvement.<br />
<br />
And this, my friends, is why I have not written for so long. How can I heartfully write when what is weighing on my heart is so heavy? How do you put into words that which you can barely let into your mind without pain? How do you say it out loud, when saying out loud is to really and truly admit it...admit that you can't do it anymore, that you can't handle what's happening on your own, that the image that you have in your mind must be reshaped, and that alone, you feel like you are drowning? <br />
<br />
But because we love each of our children and we want what is the best for all of them, no matter what the cost to us, I am packing up my pride tomorrow and heading into what is for us the deep unknown, and asking<br />
<br />
for help.Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-51005557284772056782014-03-06T19:06:00.000-05:002014-03-06T19:06:00.359-05:00Sadness and Reconciliation, Part 2This is Gabriel's story, from a few days ago, so I'll let him tell it:<br />
<br />
<i>One day, I woke up and I was all alone and I was looking for you guys and you guys were all hiding in the laundry room. And so I turned on the light and asked 'What are you doing in here?' And then I saw a baby angel falling from the sky and I caught her and I healed her wing and then I let go of her and she was flying. And the baby angel was Hazel Grace. And if her wing gets hurt again and she is falling then I will catch her. And she will be safe because I will take good care of her. </i><br />
<i><br /></i>
Then, the night before last, as we watched his poor fish get sicker and sicker, he said that his fish's 'wing' was broken. <br />
<br />
<i>Mom, my fish's wing is broken like Hazel's wing was broken when she was a baby angel. Maybe I can fix his wing, too. But that's ok because if I can't, then God can fix it later. And Hazel's wing is better, so that's ok even if my fish stays sick and dies. </i><br />
<i><br /></i>
Then later:<br />
<br />
<i>Mom, can I get a snake now?</i><br />
<i><br /></i>
No, we cannot get a snake.<br />
<br />
But I am sure that Hazel Grace feels just a lit tle more secure knowing Gabriel's got her back!<br />
<br />
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Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-80266935385685468572014-03-05T19:04:00.000-05:002014-03-05T19:04:00.167-05:00Sadness and Reconciliation, Part OneGabriel's fish died.<br />
<br />
We had set up a fish tank when Jo turned 3, and every one was allowed to choose a fish. Gabriel was only about 4 months at the time, so we chose a pleco for him since they are the cute bottom feeders that suck on everything and he was still nursing, and putting everything in his mouth. <br />
<br />
This fish didn't really have a name. We just called him 'Gabriel's Fish' or the 'Sucker Fish', but Gabriel knew it was his fish, and he was very proud of it. <br />
<br />
It started out at just a few inches and ended up at almost a foot long, and it survived <i>everything!</i><br />
<br />
It survived the time we went out of town and my in-laws watched the house and the power went out and they didn't start the filter again so the snail laid eggs and the tank got over run with snails.<br />
<br />
It survived the time the aerator tube came loose and drained almost the whole tank onto the floor.<br />
<br />
It survived the time the paper came off the back of the tank and the sun turned the whole tank green.<br />
<br />
It survived when I didn't change or refill the tank forever and a day until the water had evaporated to less than half and the filter stopped working.<br />
<br />
It survived when our other fish had babies, then ate the babies and all the other fish in the tank and then died.<br />
<br />
It survived when the heater quit working in the tank and the water got really really cold.<br />
<br />
It survived pretty much just about everything. <br />
<br />
But then, yesterday, it just stopped moving. Gabriel kept saying that its 'wing' was broken, and that it was sick. <br />
<br />
And then, today, it was gone. Gabriel's fish had died.<br />
<br />
Poor fish. <br />
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Poor Gabriel. </div>
<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-74764915277435295002014-03-04T19:46:00.000-05:002014-03-04T19:46:00.505-05:00A Little PieceIt hits me suddenly, this urge to write. <br />
<br />
The letters, words push up against me and the <i>must</i> be said and they <i>must</i> be heard, even if it's just here on this blank white page. <br />
<br />
A flood after a dry spell.<br />
<br />
And if I suppress this urge, this furtive desire to say, be, <i>create</i><br />
<i><br /></i>
If I say, no, not now; I don't have the time right now.<br />
<br />
If I turn away, the words pile up and jumble together and the moment's lost and the thought is suppressed and it never comes together again in quite the same way. <br />
<br />
And I am disappointed in myself for not being true to who I want to be and who I am. <br />
<br />
But some days, I barely want to haul this tired body out of bed. I don't want to go through the same old same old again...<br />
<br />
Tears, fighting, whining, more tears, meltdowns...and that's just before lunch!<br />
<br />
And I say, what am I doing? What am I doing that is making a difference? Why do I bother? I go through the same motions every day and nothing seems to change. <br />
<br />
How many times can you say don't jump on the couch because it's ripping apart just to turn around and see it being jumped upon again? How many things do you need to say no to that you never thought would need an explanation? Like shampoo dumped on the bathroom floor by a child who is old enough to know better but says that they 'didn't know'. How was I supposed to know that 'no dumping shampoo on the bathroom floor' needed to be a rule that would need to be spelled out? <br />
<br />
And I know that parenting is a God given task and that it is a glorious one and that children are gifts from God,<br />
<br />
but when I'm on my knees wiping up half a bottle of shampoo that I clipped coupons for and bought on sale because the budget's tight, and as I ring the sopping mess out into the bathtub and watch the lather wash down the drain wasted because it's been too long since the floor's been mopped to be able to salvage it, I wonder if I'm truly cut out for the job<br />
<br />
because I don't see the joy right then. I can't <a href="http://onethousandgifts.com/" target="_blank">count the gifts</a>, and I have nothing to offer but a tired, worn out body that houses a tired, worn out shell of a mom who feels inadequate and would much rather hide in a corner than reveal her shortcomings to the little ones that desire so much from her. <br />
<br />
My knees cold on the hard floor, my back aching from the precarious balance it takes to get every last sud off the floor because the tiles are an ice rink when coated with the soapy film,<br />
<br />
I can't see the glory.<br />
<br />
But then I look over at the one who's helping me clean it all up. I glance at the culprit and I realize that we are working together. True, it's not fun, but who's to define 'fun'? Maybe that's all they wanted. Maybe the dumping of the soap was precipitated by the desire for the punishment: clean up the mess with Mom. <br />
<br />
With Mom.<br />
<br />
Maybe that's all they really want. Maybe they don't care that I'm tired and worn out. Maybe to them I'm not worn out, but worn in<br />
<br />
like comfy pajamas<br />
<br />
and maybe all they really need, all they really want, all they are really asking for with their cries and grasping hands is for this tired worn out mom to sink into the couch and let them spread a book across my knees or let them push a deck of cards into my hands and match the colors and the numbers and let them win<br />
<br />
or not. <br />
<br />
Maybe my inadequacies are in my head, not theirs<br />
<br />
So tomorrow morning, as I push back the blanket, and I push back my hair into a messy ponytail that's just <i>messy </i>and not <i>cute messy, </i>I will also push back the lies.<br />
<br />
I will push away the lies that whisper in my ear:<br />
<br />
<i>You can't do it. You're not good enough. You don't have what it takes. You're not what they need...</i><br />
<i><br /></i>
and in the pushing away, I will make space. <br />
<br />
Space in my arms, space on my lap, space in my patience...<br />
<br />
Space in my time.<br />
<br />
Because that's all they're really looking for anyway,<br />
<br />
Just a little space. A little piece of Mom that can go a long way.Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-47231138400598078112014-03-03T21:34:00.000-05:002014-03-03T21:34:42.699-05:00Feeding Hazel GraceThe snow has fallen, the streets have been somewhat plowed, the children have been bundled, sled and snowballed, unbundled, hot-chocolated, fed, pajama-ed and finally kissed goodnight,<br />
<br />
and I have shut the door to my room...<br />
<br />
with me on the inside, and everyone else on the outside,<br />
<br />
and I breathe a sigh of relief of a day well done.<br />
<br />
These last few weeks have been a nonstop flow of days best described as survival of the fittest,<br />
<br />
and I often fall into bed at the end of them wondering if I am truly the fittest.<br />
<br />
Hazel's feeding issues have yet to be completely resolved, although we are much closer to a happier solution. To make a long story shorter, when Hazel was in the NICU, she was being fed my breast milk mixed with Enfamil powder to increase the number of calories per ounce of milk since she was so small and her little tummy could only process but so much volume. Then, she began to drink from a bottle. She would be fed as much as she could through the bottle, and then what she could not eat by mouth, would go down the tube. <br />
<br />
The next step was that I would nurse her before her bottle once a day while I was there. Then, she would be offered the bottle and then the rest would go down the tube.<br />
<br />
But when she got home, and she started to nurse more often, her body began to reject the powdered formula that we were mixing into my breast milk to put down her tube, and she began to have more reflux. So, the powder was stopped, but that meant that the volume of her intake had to increase. <br />
<br />
She had a good latch, though, and was nursing well, which was our goal, and so, when we went to the surgeon to check on her tube placement and healing, he recommended that we stop the tube feeds altogether during the day and just tube her at night and breast feed her during the day to encourage her to nurse and to increase her stamina. Well, I didn't quite agree with that, because it seemed like a big jump to take away all tube feeds during the day, and a call to the pediatrician confirmed what I thought, and together we came up with a plan to nurse her every other feed during the day, and tube all the rest. <br />
<br />
That was going ok, but when we went back to the pulmonologist, she said that Hazel was not gaining enough weight, so we needed to increase her feeds from 90cc's every 3 hours to 120cc's every 3 hours. Around the clock...day and night.<br />
<br />
Well, we can guess where that headed! Hazel's reflux came back with a vengeance! There was no way that her tiny self could tolerate all that volume increase so quickly! But I was nervous because Hazel had not gained weight, and the doctor wanted to put her back on the formula mixture, and I knew that would be worse. So, we slowed the feeds way down and did everything we could to get her to take that volume. In addition to that, I suddenly had to produce 120cc's every three hours in addition to the little bits that she would nurse. She wasn't really nursing well anymore because she never felt hungry because her tummy was always full, so I had to pump every 3 hours, around the clock. I only skipped the 3AM pumping session, even though I still had to get up to hang her feed. I felt like I was pumping and feeding Hazel constantly! As soon as one feed was done, I had to pump and prep the next one! <br />
<br />
Then, the week before this past week, Hazel's reflux hit so hard that she could not keep anything down. She would vomit the entire feed either right after it was done running or within a half an hour. But, since she was holding nothing down that went in by tube, she was hungry and started nursing more, and she would keep whatever she got down from those sessions. Sometimes it was a few swallows, but sometimes she would nurse til she fell asleep (oh, the glory of that feeling! I didn't realize how much I missed it til I had a little glimpse of it!).<br />
<br />
We were due back at the pulmonologist and I was dreading the scale there, but there was just nothing to be done about it. If Hazel couldn't keep her food down, how can the child gain weight? <br />
<br />
Then, last Monday, a day before the pulm appointment, Hazel started vomiting blood. It wasn't a lot, but it was enough to cause concern for both me and Hazel's nurse, so we went to the ER at Children's and on the way, I made a follow-up appointment with gastro for the following day, knowing they would tell me to follow up with them anyway.<br />
<br />
We were told in the ER that the blood was 'merely' due to the irritation of her esophagus due to the acid in the reflux that she was constantly experiencing. We were told not to worry but to keep an eye on it, come back if it got worse, and...follow up with her gastro doctor. <br />
<br />
Since I had already made the appointment, we got in the very next day, and explained the situation. We decided to adjust her feeds so that she gets a continuous feed of 400cc's overnight, from 10PM to 6AM and then from there, she would get only 100cc's at 10AM, 2PM, and 6PM, with nursing on demand between those times, with the liberty to change the rate or the dose as Hazel needs and we see fit as long as she is getting at least 620cc's per day. <br />
<br />
You can not imagine the change this has made in both of our lives! We have had to change the start time of the continuous feed from 10PM to 7PM because she was still having a hard time keeping the milk down even as slow as it was running, but other than that, she has done famously, and this means...(drumroll, please...)<br />
<br />
I DON'T HAVE TO PUMP EVERY 3 HOURS ANYMORE!!!!<br />
<br />
Yes, folks, for the first time since Hazel Grace has come home in December, I do not have to pump every 3 hours. <br />
<br />
This is such a <i>HUGE</i> relief! I am producing pretty much the same volume, and I know that if I ever need more, I just need to pump more, but I am no longer tied to the pump every 3 hours! <br />
<br />
<i>In addition to that</i>...Hazel is not connected to her feed tube 24/7! That means that there are actually times during the day when we can even take off her extension and tickle her smooth tummy with just a little button off to the side! <br />
<br />
Oh, the joy of it all!<br />
<br />
I never thought that feeding such a small child could be so stressful! I am constantly counting milliliters and calories and hours and rate and volume and I often doubt myself as to if what I am doing is right. <br />
<br />
Am I slowing Hazel down and delaying her development by not giving her bottles? Is my personal desire to nurse my baby detrimental to her overall well being? <br />
<br />
I ask these questions repeatedly to both myself and her specialists and doctors, and I always get the same answer:<br />
<br />
We don't know. Probably not, because every baby is different, every day is new, and every experience is a brand new turning of a clean page. <br />
<br />
So, the bottom line is, I feel in my heart that I want to hold my baby and nurse her as I did the others, and I see by her health that what we are doing is working for her, so all that is left is to trust.<br />
<br />
To trust to One who put it all together to begin with: Baby, Mother, Milk<br />
<br />
Perfect food, perfect plan.<br />
<br />
<br />
<br />
<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0tag:blogger.com,1999:blog-4826465069863298721.post-13234821242245875152014-02-09T23:12:00.000-05:002014-02-09T23:12:35.180-05:00Post Traumatic Stress SyndromeI thought it was over. I thought that as the doors to the NICU swished closed behind us for the final time and Jimmy and I, giddy with excitement and trepidation, wheeled Hazel Grace down the hall tucked safely in her carseat for her first car ride home, I thought that I was turning the page...<br />
<br />
I thought that I could look back, wipe my brow, and say, 'Whew! Well, we made it through <i>that</i> one!' and move on to the next chapter in the book of our life with our baby. <br />
<br />
And it's not like we have had to go back to the NICU. Praise God we have been so far spared that trip, but we have had to go back to the hospital for check up appointments and routine exams. <br />
<br />
Getting ready for our first trip out of the house and to our first follow-up appointment was a bit of a challenge. I had made a list and checked all the items off:<br />
<br />
Spare clothes? Check<br />
Diapers? Check<br />
Feed pump? Check<br />
Spare extension tube? Check<br />
Emergency MIC-KEY button? Check<br />
Oxygen tank? Check<br />
Water for flushing...syringes for flushing and meds...feeding bag? Check, check, check.<br />
<br />
I think I'm ready. <br />
<br />
And I was. There was nothing that we needed that we didn't have on that first trip back to the place where it all started. <br />
<br />
But what I was not prepared for, what I had forgotten to fully prepare, was myself. <br />
<br />
I'm not even sure that there is a <i>way</i> to prepare for it: Post Traumatic Stress Syndrome.<br />
<br />
I know it sounds silly. I was in the NICU, for Pete's sake, not a war zone, and there were no bombs dropping and no sirens blaring...<br />
<br />
or were there?<br />
<br />
As I headed down the hall toward the clinic where Hazel had her appointment, I passed by one of the elevators that is reserved for staff and patients. At just the moment that I was passing, I heard the soft <i>ding</i> and the doors slid open, and there it was<br />
<br />
an isolette<br />
<br />
with a baby inside.<br />
<br />
My stomach dropped to my knees which were feeling weak, and my hands got a death grip on the handle of the stroller where Hazel lay sleeping peacefully. I peered past my white knuckles to instinctively check the tiny bundle inside the stroller. Is she breathing? Is she blue? How is she saturating? Panic began to rise and along with it my breakfast, but my throat was so tight that nothing would have made it past it anyway. The nurse peered at me. 'Are you ok?' <br />
<br />
'Yes' I choked out and reminded myself to breathe and forced my feet to continue walking down the long hall that now looked too bright, was too noisy and was altogether way too long. I realized that I could leave the NICU, but the NICU would never leave me.<br />
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I know that Hazel Grace feels it, too. <br />
<br />
We have a bottle of the same hand sanitizer that the nurses at the hospital use, and for the longest time after she got home, when we would use the sanitizer and then approach her, she would tense and cry. The memories too fresh for the gentle tones of our voices to overcome the fear of the unknown. Or I guess I should say the fear of the known...the blood draws, the pokes and prods, the rough hands of strangers...the scent brought it all back. <br />
<br />
She seems to be over that now. She doesn't seem to mind at all that we approach her after using the lotion, but there are still signs of her recall of the time she spent in the NICU. We got her one of those bouncy seats, you know the ones that have the vibrator in them that the babies just seem to love? The first time we put her in it, to give her another view of the world, we switched it on, and a look of pure panic and terror came over her tiny face. Her eyes flew open and her back arched, arms splayed, legs tense, and she started to cry. A deep, heartfelt cry. A cry of pain and fear and complete terror. <br />
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We immediately turned the vibrator off and took her out to comfort her, and it took a while for her breathing to return to normal and her heart rate to slow down. What we realized was that the vibrating must have reminded her of all the time that she was intubated in the hospital. The machine that breathed for her through a tube down her throat vibrated her bed very strongly such that you could feel the vibrations through the whole isolette. It must have felt very similar to the vibrations of the seat. <br />
<br />
We still put her in the seat, but we have taken out the batteries so no one can accidentally turn it on, and she lies there peacefully, looking up at us with a look of trust and dependence. <br />
<br />
And I know that I will do all that I can to protect her from ever having to experience anything like what she had to go through the first 5 months of her life. <br />
<br />
It is over,<br />
<br />
But it's not. <br />
<br />
It has deeply affected our family in ways that I am sure will continue to surface long after the whole ordeal is 'over.'<br />
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And in the meantime, we do what we can to protect and support one another, trying to keep in mind the raw and tender nerves and emotions that sit just beneath the surface of all that appears well and good,<br />
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And as I stroll down the halls of that big hospital where Hazel's life was saved and our lives were torn apart, revised, and thrown back at us in disarray,<br />
<br />
And as the elevator doors ding and the wheels of the isolettes whisper their sticky swishing sound as they make their way down the hall in the opposite direction, going <i>in </i> where we so recently came <i>out</i>,<br />
<br />
Instead of turning my eyes down in panic and uncertainty, I will turn my eyes up. <br />
<br />
I will turn them up toward the twinkling blue ceilings of that impressive hospital, and I will breathe the prayer that I have sighed so many times both over my baby going out, and that baby going in:<br />
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Numbers 6:24-26<br />
The Lord bless you and keep you<br />
The Lord make His face shine upon you, and be gracious unto you;<br />
The Lord lift His countenance upon you, and <i>give you peace</i>. <i>(Italic emphasis mine)</i><br />
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Because I<i> </i>can't take away what has happened to us, and I can't stop what will happen to them,<br />
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All I can do is turn it over to God and pray peace over all of us.<br />
<br />
And as my eyes burn and the tear threatens to fall over what has happened and what is to come, I know that His peace is enough.<br />
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<br />Mama Bearhttp://www.blogger.com/profile/01658505477619300328noreply@blogger.com0