3 Months

I have pondered and contemplated this post for the last week or 10 days.  In that time, it has changed shape and form several times.  Some for the better, some for the worse.  I have a lot to say.  So bear with me...

The title of this post has also changed several times.  It has ranged from Life goes on, to Forget normal...searching for sanity, The pit of hell, One day at a time, Beyond starting over, Back at square one,  and I could go on.  I settled on 3 months, because Zachariah is 3 months old today.  It is Friday the 13th again.  Zachariah was born on Friday the 13th.  In some ways the time has flown by.  In others, it seems like forever and a day ago.

Three months ago we started this journey.  We never expected it to take us where it has; and we have little idea where it will lead in the future.  I think that is what many people fear, is the unknown.  And we have a lot of unknowns.  It has been a 3 month long colossal roller coaster ride and I am sure it will continue to be so. 

  Sometimes I feel like we are on our own little lifeboat out in the ocean, left to survive on our own.   Occasionally another boat floats up for a moment or two, drops off a much needed package, or visits for a moment, but then they are back off on their own journey and we are left to ourselves again.  The last two weeks I have really felt that way.  We have experienced a lot of changes and ups and downs in the last couple weeks, and I have come to some serious realizations. 

On April 2nd we took Zachariah to see Dr. Muntz, the ENT.  The plan was to spend several hours at the doctors, and do a trial without the nasal trumpet.  Admittedly, I was not looking forward to this for a few reasons.  First, spending hours at the doctor is not something I relish.  We do enough of it as is, and to do it on purpose is not fun.  Second, I was hesitant about this trial.  Zachariah has had a nasal trumpet since he was 3 days old.  He had gone without it for between 4 and 20 hours in the NICU.  We had not tried it at home, and I was worried.  I didn't think he was ready.  I worried that he couldn't do it.  I didn't want to think about what happens if he can't, now, or in 3 months.  We hadn't been sitting in a room for more than 3 minutes when Zachariah pulled his trumpet.  Sometimes I swear he knows EXACTLY what he is doing when he pulls it.  I am sure it is bothersome and itchy and all kinds of uncomfortable.  So thus began his trumpetless trial. 

 We stuck around for about 90 minutes to see how he would do, before we headed home.  The first hurdle was the carseat and the car.  The carseat isn't Zachariah's friend---it is difficult for him to get into a comfortable position where he can breathe well with the trumpet---so I was very worried about how he would do without the trumpet.  He slept all the way home and seemed to do fine.  I was certainly pleasantly surprised.   He continued to do well, and we continued to be hopeful.  Nights are hard because he still has a continuous feed (which I have begun to despise), so he can't sleep flat on his back.  He does ok propped up, with his head turned with the trumpet, but not so well without it.  So we put him on his side.  The first night he did ok, but by the second night he wasn't doing so well.  He'd had a rough afternoon and was having some spells, and I really felt he needed it back in.  I didn't necessarily want it back in, but I felt he needed it.  So we put it back in.  He went 58 hours without the trumpet, and did incredibly well for 50-52 of those hours.  In that time we learned it is more difficult for him to bottle feed without the trumpet.  There could be multiple reasons for that, but nonetheless,  we went backwards in our newly acquired ability to take a whole bottle.

  It was an insanely frustrating few days for mom.  I was really having a hard time with everything we were doing with him, on top of my inability to address all my other home and family responsibilities. And I was beginning to not just worry, but totally meltdown about what was going to happen in the next few days.   On April 5th, Zachariah got his last set of casts off, and got his shoes and bar.  I am glad we are done with casts, but this bar, which he currently wears for 23 hours a day, and then in 3 months will wear at night time until he is 3 years old, presents an entirely new set of challenges.  Because of the angle it holds his feet, he has to sleep flat on his back with it.  But he can't sleep flat on his back if he doesn't have the trumpet, he has to sleep on his side.  But he can't sleep on his side in this bar, because of the angle of how his feet are.  So we can't do one or the other without him regressing in some manner.  And it is just another THING.  Another thing that gets in the way.  Another thing that has to be hooked up.  Another thing that reduces maneuverabilty.  The first night we had it, the feeding tube got all tangled in it, and got pulled out.  The little shoes are leather, and very stiff at first, so we have to worry about blisters.  The bar is heavy, and takes some getting used.  The first two days, all he did was cry.  It was just too much and it was driving me literally insane, and I was having a hard time handling it all. 

This predicament led to a couple realizations.  First,  it is all too real that when  you have a child with special needs,  there aren't always services out there for them or you, and if there are, you can't always get them. Caring for Zachariah is a very time consuming and sometimes draining job.  I don't want to sound like I am always complaining, because I am not.  I do, a lot, but I also want others to be able to understand, even a little bit, how hard it can be.  I also need to remind myself that it isn't easy.  I all too often get consumed with my inability to take care of all the things around here that need to be done.  Meals, Dishes, Laundry, Cleaning, Caring for my other children,  all MY responsibilities, and all MY failures.  I don't know why it is so hard for me to get it organized and coordinated, and be able to do it, but I haven't been able to yet. If I could even get a handle on one or two of them, it would help. I was just feeling like I had a couple toes into the groove when all these changes started, and they just threw me flat on my back.  Emotions run very high; stress is at a maximum, and the feeling that it will "never be normal" is always in the back of my head. 

We have had a couple of health care professionals comment on how well we are doing with all this.  I just shake my head and think, you should come and spend a couple hours at my house, and you would see what a disaster and failure it all is.

And then this week I remembered something.  Before we left the NICU, they requested 24-32 hours a week of skilled care to help us out.  Of course the insurance denied it, so we didn't get it. I wonder how different things would be if we had 24-32 hours of help a week, either to care for Zachariah, or to help out with other household responsibilities.  I wonder how different it would be with 20 hours, or even 10.  I am sure it would be VERY different. So in the words of my very wise and seasoned sister in law, I am going to "lower my expectations".  I am sure my dear sweet husband will appreciate that--NOT--but for my own sanity, I am going to try for awhile to lower my expectations, and not feel like a failure because I can't get anything done.

 Second, and even more overwhelming was the realization of just how special this little boy is.  There is not another child like him, with his conditions and needs, within the state of Utah, within 1000 miles from here, and possibly not anywhere.  It is possible that he is the ONLY child in this world that has this set of conditions and needs that are being addressed in the manner that they are. No one has ever left Primary Childrens with a nasal trumpet---and there are very few places that use them on an out patient basis.  That alone, sets him apart.  Clubfoot has an occurrence of about 1 in 1000.  Sticklers Syndrome has an occurrence of about 1 in 10000, and Pierre Robin has an occurrence of about 1 in 30000 in his form.  I am no mathematician, but if you put the 3 together, I am sure the occurence of it is rather rare. I am sure there are several kids who have 2 of his issues, in fact I know it, because Aynsli has 2 of the 3, in a different form,   but very, very few who have all three. 
Talk about OVERWHELMING and HUMBLING!  Yet it also makes it very difficult to find answers to your questions, or solutions to your problems, because nobody knows.  Nobody has dealt with it before, and so they have no answers.  At times, you can feel very alone.

It is not easy.
It is emotional. 
It is lonely.
It is intense. 
It is frustrating. 
It is time consuming.  
It is overwhelming.
It is exhausting.  
It is hard.  
It is knee-bending, floor-hugging, fetal-position-sobbing hard at times. 

But it is worth it. 

 I have this beautiful sweet little boy.  This precious little man whose eyes light up when he sees me, who smiles and coos at me.  This sweet little who loves to snuggle and be held, and who I swear can wriggle himself across the bed to lay right up against me. This amazingly strongly little person who has already taught me countless lessons; and continues to do so every day.

Could I be more blessed?

Three months.  It has been an amazing three months.  We have laughed. We have cried.  We have struggled.  We have triumphed.  We have cried some more. We have been up. We have been down.  We have wished.  We have hoped. We have struggled some more.  We have failed. We have overcome. We have felt your prayers.  We have been blessed by your love and your service. We are grateful.  And we will continue on.