Every Good and Perfect Gift

A 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.

And this got me to stop and think:

If this woman is 'blessed' to have two 'perfect and perfectly behaved' children, then am I not blessed because my children are not all 'perfect' and 'perfectly behaved'?

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?

But James 1:17 states clearly:

Every good and perfect gift is from above, coming down from the Father...who does not change like shifting shadows. (NIV)

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.

We cannot dispute that fact that our children are gifts, and from where else do gifts such as these come except from the Father?

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,

and so are yours.

This doesn't mean that every day will be a perfect day.

This doesn't mean that bad things won't happen.

This doesn't mean that they won't make bad decisions sometimes...a lot of times...seemingly always.

And it certainly doesn't mean that it will be easy.

But it does mean that we are blessed.

All of us, with our perfectly 'imperfect' children,

Are blessed,  most definitely

Blessed.

Oh, 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!!!!!

No more tubes snaking through the house!  One fewer beep in the night!  No more tape on her chubby little cheeks!

Hazel Grace has been DC'ed from her supplemental oxygen!!!!!

Moses, our DME driver, came by this morning and picked it all up!  I was so excited!

Next to go: the feeding pump and IV pole!

Finding Focus

I 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.

I glance at the clock.  It's only 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

Because it's lent, and this year, I've given up coffee. 

Last year, it was sweets, but this year, with this job that keeps me up all night, I chose to give up coffee.  

But why?  

A group of women at our church are going through Beth Moore's Bible study on the book of Daniel called Lives of Integrity, Words of Prophecy (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.  

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.  

Ouch.  That hit home.  

Why am I giving up coffee?  

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.  

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 around 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.  

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.  

So how is this bringing me closer to God?  

And how do I, as a mother of 5 who works full time at night, not come across as sounding smug when I say that I am giving up coffee in this Starbucks-driven society?  

So this year, I doing something different.  Instead of focusing on giving up, I am focusing on staying focused. 

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.  

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.

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.  

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.  

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 my sacrifice, but on His.

His sacrifice that has given me life.  A life to live, and a life to enjoy

A life in which to mindfully enjoy my coffee.

Breathing Easy

I can still feel it, you know, a tinge, an itch, a tingle in my flesh in that spot where almost 19 months ago the doctor drew his scalpel across my abdomen 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.

My body has healed, and I am well, and she has grown into a 17 pound cruising little girl,

but we both still bear the scars.

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.

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.

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...

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.

Friends, all of you out there who prayed over us and over our sweet baby Hazel Grace,

Dear, dear friends,

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!

Yes!  You heard right!  Hazel Grace is done with the cannula!  Done with the sighing condenser dragon that hangs out in our living room, and done with the oxygen tanks!  She is done with cannula taped to her face, and done with tubes dragging behind her!

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 plus gone through a cold without needing the supplemental oxygen that her pulmonologist officially took her off the oxygen.

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!

And what joy will  be mine in the giving!

What I Meant to Say Was...

I don't want to be a super-mom.

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.

I never signed on to train to practically be a nurse just so I could care for my baby.

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.

I never thought to study pharmacology just so I could pronounce the names of the contents of my refrigerator and cabinet.

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.

I didn't choose to have The Bipolar Child as my nightly read because it has a nice cover.

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.

But here we are.  And this is what I do.  And this is who I am.

And I am no more of a super-mom than you are.

You, whose husband is in the military.

You, whose son is far far away.

You, who is starting working again for the first time and leaving your tiny baby at home.

You, who tries to work at home while the kids tangle in the background.

You, who struggles with too much on her plate, but not wanting to say no to anyone.

You, whose mother is sick.

You, who is in school and handles your kids on your own.

All of you out there. All of you mothers and women and caretakers and givers,

I am no more of a super-mom than you are.

And I don't want that title, anyway.  It's too much to live up to, too much to be.

I just want to be me:  a wife, a mother,

And a friend.

Your friend.

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.

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.

And so, ladies of the Monday morning Women's Bible study, if you are reading this, this is what I meant to say:

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.

The 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.

Which is great because I have not had much energy lately.

A lot has been happening around here.  To make a long story short, here's some of what's going on:

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.

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.

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.

(Note that I said *hopeful*.)

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!

Oh, How Far We've Come!

A year ago today, in a hospital room not far from here, I lay dying.

My blood pressure was so low that I could barely breathe and the bleeding and contractions just wouldn't stop.  

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.  

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.  

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.  

'I don't want you to be a hero', my mom said.  

'I have life insurance', I said. 'Please take care of the kids', I said.  'Please keep them together', I said.  

She nodded and knit, counting stitches, counting seconds, counting minutes.  

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.  

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.  

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.

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.  

That's how well we knew each other by then.  Well enough to read the signs.  

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.  

He made me say it.  I had to force the words out between cracked lips.  

C-section.  

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.  

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.  

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.  

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.  

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!

Hazel Grace, a few days after she was born.

Hazel Grace, today!