Letting Go

“Making the decision to have a child is momentous.  It is to decide forever to have your heart go walking around outside your body." ~Elizabeth Stone

I just returned from dropping kiddo off for his first day of 1^st grade.  And now I’m sitting here, dabbing my eyes with a Kleenex, feeling like a not-so-little piece of my heart just went skipping down the sidewalk.

Even though kiddo will be seven years old in just five short days, this is the fifth year I have sent him off to school.  No – we’re not one of those memorize-the-flashcards-so-your-kid-will-be-a-genius types of families (though I’ll admit I played a lot of music to him while he was in utero); he went to school the very first time just before he turned two because he had serious delays and needed support.  I was unprepared to say goodbye to him so early, but I had to do it because it was what he needed.  He required that level of assistance and, as his mother, it’s my job to provide or secure what he needs the best way I can.

I’m no stranger to having to let go of what I thought my parenting experience would look like.  Any parent can tell you there is no instruction manual for parenting.  Yes, there are lots of books; but not a single step-by-step, this-is-what-you-can-expect manual exists…to my knowledge.  And, while there are some good texts available for the medical side of parenting a micro-preemie, I’m still searching for solid, relatable material to help me navigate the emotions tied into raising a child who has special needs.

I get really frustrated when someone who has neuro-typical children older than mine starts to play the, “Oh, wait until he…” game.  I have nothing but respect for those with children who have already navigated milestones like puberty, driving, leaving for college, getting married and more.  I certainly don’t know what it feels like to watch my child hit those markers because we haven’t gotten there yet; I hope kiddo has the chance to hit them, too.  And I respect that those parents have had experiences with their children that I haven’t.  But I have had parenting experiences that they haven’t, too!  We’ve navigated so many challenges with our not-quite-seven-year-old kiddo that I’m no stranger to having to let go, praying to God that everything turns out okay, and facing whatever comes our way.

I started having to let go when I went into the hospital for kiddo’s birth.  (Actually, it was even before that.  There were some indications early in my second trimester that kiddo’s spine may not have developed properly.  Fortunately, that was not the case.)  There are too many details to share in this post, so let me summarize it to say that the fact that we’re both here is a double miracle.  Truly, I was so ill and he was so tiny at just under 27 weeks, that our survival statistics were bleak.  And, while I’m extremely grateful for the advances of Western medicine to save our lives, there were so many things I didn’t get to experience because of his unexpected, super-early arrival.

I didn’t get to know what my body felt like at full-term – the roundness of my belly and fullness of my breasts, the inability to shave my legs or paint my toenails, or the awe in watching my child move around inside my body, catching glimpses of a hand here or a foot there.  I didn’t get to ask hubby for a late-night run to Meijer for pickles and ice cream to satisfy an odd craving.  I didn’t get to feel the pains of labor and know my body was doing what it was designed to do (and please don’t tell me I’m “lucky” for having missed that; it was an experience I had looked forward to).  His delivery was from an emergency C-section, so I didn’t get to experience the fullness of the natural birth I had been planning – the breathing, the pushing, and the feeling of him coming out of my body, knowing I had birthed him from the strength of my form.  (So much for that pre-natal yoga class!)

Once he was born, the experience of letting go continued…

Immediately after delivery, he was briefly whisked by my chest so I could see him.  He made a mewling sound, like a tiny kitten, then was immediately taken to be intubated because he couldn’t breathe.  There was no cry from my son to pierce the delivery room – no happy moment on video – no tears of joy from my husband as the doctor proclaimed, “Yes, it’s a boy!”  Instead, it was quiet and uncomfortable as we listened to hushed conversations from the medical staff and heard terms we didn’t understand.  Our hearts were in our throats because we thought kiddo might be dying and I was, by no means, out of the woods yet.  It certainly wasn’t the picture I had imagined…holding my swaddled child while he suckled at my breast, with my husband looking on in joy.

In reality, it was 18 days before I could hold kiddo.  Eighteen grueling, horrendously long, frustratingly scary days before he was stable enough to be out of his incubator, swaddled against my chest.  At the time, I remember thinking that God surely had a sick sense of humor.  What a cruel joke to give a massage therapist a child that she couldn’t hold, let alone barely touch.  It felt as if my heart had been ripped from my body and put in a box on the shelf, not to be touched for fear of breaking.  Talk about having to let go!

And I don’t even know if I can write about the afternoon I was discharged and came home…without my precious, sweet little boy.  I had been in the hospital, recovering for almost a week when it was determined I was well enough to leave.  Call me crazy, but I wanted to stay.  Part of what had made my time in the special-care OB ward bearable was that I was just a few floors away from the NICU, and could be wheeled down to see kiddo any time of the day or night.  And I did.  I can’t tell you how many times I woke up in the middle of the night, looking for him.  I was blessed with excellent care because any time it was too much for me to bear, one of the nurses would push me through the labyrinth of hallways, down to my little bird’s nest in the NICU, where I could sit by his side and marvel at his beautiful, tiny perfection.

But there was nothing in the world that prepared me for the pain of letting go and leaving him in the hospital that first night.  I had spent as much of the day by his incubator as I could, but it was finally time to leave.  I remember one of the attendants parking my wheelchair by the door as hubby went to get the van and I looked across the foyer to see a family with a newborn heading home.  It was almost more than my heart could bear.  Again, I thought it was a sick joke to be sitting so near someone experiencing so much joy with their precious bundle while mine was fighting for his life.  My arms were empty, but my heart even more so.  I knew kiddo had to stay in order to survive, but I was leaving him!  That was what he needed – argh! – there’s that word again!.  He had to be there if he had any chance of living, and I had to let go.  And I cried the whole way home.

I wish I could say the letting go got easier, but it really didn’t; I just got used to it.  We navigated 98 bone-wearying days in the NICU, with more medical details than will fit in a two-inch binder, including a really bad infection, in-patient surgery and dozens of procedures.  Each time, I had to let go of what I knew, research as many details as I could find, make the best decision with the information at hand, and pray to God that putting my precious child in the hands of the people around him was what I was supposed to do.  I left some nights wondering if my precious kiddo would be alive the next day, or if I had just spent my last moments with him.  Talk about a crash course in letting go!

Since his hospital discharge, we have navigated hundreds of hours in therapies, appointments with just about every type of pediatric specialist available, and multiple IEPs (Individualized Educational Program meetings) to assure he is getting the support he needs to be successful.  He has had three years of Early Childhood Special Education, and one year of kindergarten, with the last two years of school being especially difficult for him.  No…I’m no stranger to having to let go.

But that doesn’t make it easier.  It’s still a challenge for me to watch him walk away, knowing that he is out of my hands and someone else is responsible for his care.  I have done my research, asked my questions, advocated for what he needs, and assured the best supports are in place.  I know I'll be going to pick him up in a little while; but for now I have to walk away and let go, and see how it all plays out.

So please excuse me if I don’t respond to your comments of “It will get easier,” or “Oh, he’s just in first grade – you’ll be jumping for joy next year.”  I’m no stranger to what it feels like as a parent to let go of my precious child.  And, as much as I’m enjoying some quiet time for myself right now, there is a big piece of my heart running around outside of my body.