Update

As 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.

But I don't want it to be that way.  I want to be able to give my best to the family in the morning and then work my hardest in the evening.

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.

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.

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.

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.

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.

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.

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.

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!

How 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.

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?

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.

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.

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.

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!

God is good!

A Mix of Emotions

I 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.

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.

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.

But I k ow God can. And that is evident in the next piece of news I have to share...

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.  

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.

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.

I may be completely in over my head and things may be careening totally out of my control,

But He's got us covered.

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.

Thank you.

A Time of Change

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.

Yes, work.

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.  

Needless to say, I am exhausted.  

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.  

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.

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.

I have worked overnight before, so my body has adapted to the new hours surprisingly easily and quickly, but it seems to have over 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.  

And then, of course, comes the guilt.  

I know that what I am doing is necessary, but then I feel guilty about actually enjoying it.  And I do 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)!

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.  

And so, here I am now.  

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.

Is it even ok for me to be working at all 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...

Is it ok?  

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.  

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, 

And I breathe out with a sigh of acceptance that this is me and this is ok.  

Because what I do for a season doesn't define me...

Does it?

A New Journey

I 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.

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!

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.

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.

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.

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.'

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.

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? 

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

for help.

Sadness and Reconciliation, Part 2

This is Gabriel's story, from a few days ago, so I'll let him tell it:

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.  

Then, the night before last, as we watched his poor fish get sicker and sicker, he said that his fish's 'wing' was broken.

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. 

Then later:

Mom, can I get a snake now?

No, we cannot get a snake.

But I am sure that Hazel Grace feels just a lit tle more secure knowing Gabriel's got her back!

Sadness and Reconciliation, Part One

Gabriel's fish died.

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.

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.

It started out at just a few inches and ended up at almost a foot long, and it survived everything!

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.

It survived the time the aerator tube came loose and drained almost the whole tank onto the floor.

It survived the time the paper came off the back of the tank and the sun turned the whole tank green.

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.

It survived when our other fish had babies, then ate the babies and all the other fish in the tank and then died.

It survived when the heater quit working in the tank and the water got really really cold.

It survived pretty much just about everything.  

But then, yesterday, it just stopped moving.  Gabriel kept saying that its 'wing' was broken, and that it was sick.  

And then, today, it was gone.  Gabriel's fish had died.

Poor fish.

Poor Gabriel.