Coming Home ... Again

Sometimes you just have to be unfiltered and raw and tell the story just like it happened. Our story is not always pretty, and we are a constant work in progress. But we have grown so much because of it.

When she was around 6 weeks old, our daughter was released from our local Children’s Hospital after about a month stay.  She is our only child, and we had only parented “alone” and at home for two weeks before she got sick.  The next four weeks we had the help of the medical staff at the hospital making sure she was going to live and once that fear passed, making sure everything was going as well as possible. When we loaded her up in the car that August day, it was like bringing a new born home from the hospital for the first time all over again as she was not the same child we arrived there with.  She was no longer sucking on a bottle. She now had a g-tube placed in her stomach to assure that she receivd proper nutrition, and she had daily doses of medication to prevent seizures (something my husband and I had no prior experience with). 

We were told many things by hospital personnel. She has significant brain damage. She will be developmentally delayed. We don’t know if she will have much cognitive function. It may be dangerous for her to try to eat. And so on and so forth.

Some of it was my sheer ignorance to what I was being told. After all, I had no medical training or experience whatsoever. The other was likely the stubbornness I’ve carried with me since I was a child.  Whatever the reason, I just couldn’t process it all. Even after being told everything we had, I was determined that those things they were saying would not be my child.  After all, she was awake and alert and breathing on her own.  She had some strength in her hands.  She could move her arms and legs.  She could cry when something was wrong. These were all things normal babies did. So, pulling out of the hospital drive I clung on to the only positive thing anyone would say “babies’ brains are plastic and they have the capability to build new pathways.”  All the other things didn’t matter, because our daughter’s brain was going to remap and we were headed home finally to start our life.  Admittedly though, as happy as we were to be going home, we were scared to death.

The hour-long car ride was terrifying and our daughter cried nonstop.  With us from the hospital came a medical pole, a feeding pump, feeding supplies, a mic-key, prescriptions we needed to fill, a link to several videos on seizures, and a litany of follow up appointments we would be returning to Children’s Hospital for. We would soon learn that our daughter HATED her car seat and tears and screams would come every time she was in it, for the entire time she was in it or until she fell asleep (whichever happened first).  We would also come to learn that brain injuries and certain medications make children very cranky. I remember there was a period of time when we wondered if she would ever stop crying. When we discussed this with her neurologist she told us that some kids that have suffered similar brain injuries will be cranky and cry for years. How would we endure that?

Several people, in their attempt to relate to our situation, told us, “oh my child was a fussy baby” or “she must have colic like our child did.” But neither of those things were what we were experiencing. No one that passed along those tid-bits of information were dealing with a child whose brain was destroyed by an infection and was having to take high dosages of medication to control seizures. At those comments, because we know people mean well, we would just smile and agree (I know better now than ever that sometimes people just don’t know what to say).

We did our best to find some kind of routine.  After several weeks, I finally went back to work and our daughter started preschool at a local childcare center.  The ladies that watched her everyday were a God send, and to this day we are still so grateful that God put them in our lives at that time when we were still walking lost in this world. They had our daughter during some of the worst days, but they never complained.  They were so gracious, and it gave us a much-needed reprieve at times.

But no matter how hard you try, you can’t find a normal that early on. It takes much more time and knowledge than you can possibly understand just a couple months in. Looking back, we were more like robots, going through the daily actions, but not ever really being in control. We did our best to hold it together on the outside, when it felt like there was nothing left on the inside. Most days were filled with work and preschool.  In the afternoons I’d pick-up our daughter, and she would already be crying.  I’d take her home and rock her until my husband or my sister or my mom came to relieve me.  It truly takes a village, and we broke three rocking chairs in 18 months trying to comfort our baby. Days were long and numb and nights were sleepless.

The emotional turmoil, at least for me, was the worst part.  We loved our childcare center, but it was hard dropping our daughter off everyday and watching all the children in her class develop like she was suppose to. Everyday, I left wondering if it was possible now for her to ever developmentally get where the other children already are. And if I’m honestly, that conundrum never really goes away… with time you just learn how to deal with it better and gradually think about it a little less. Many mornings I would fight back the tears until I made it back out to the preschool parking lot. Then I would cry myself to work, dry it up, and put on a face of “everything is okay” for the next 8 hours.

I’d be lying if I said there weren’t a few extremely bad days during it all. Several household items were broken in anger (of course never with our child in the room). Sometimes I just had to walk away from it all and actually allow myself to feel the anger and sadness I had inside. Sometimes I took my feelings out on others. Admittedly, I stopped talking to God all together for a while. Luckily though, others had not. 

If you give it long enough it seems everything bad has a turning point, a rock bottom so to speak. Mine was the day my husband got home from work and our daughter had been screaming for hours.  Nothing could comfort her or me by that point.  He was exhausted.  I was exhausted.  She was miserable.  I looked at my husband and said, “I can’t do this anymore.”  This was not the first time he had come home to this scenario; it seemed to be becoming our norm. His response that day was the reality I needed, “well what do you suggest we do, put her up for adoption?”  When I heard the words out loud, I just cried uncontrollably. It brings tears to my eyes now to even think about that day. My husband has been the rock in our family through all of this. I know he never for a second actually considered putting our baby up for adoption. But he knew me well enough to know I had to hear that, out loud were the words were real, in order to find a way to move forward. I needed to come to the realization that this was our life, regardless of whether we asked for it. I needed to find the blessing in all the madness.

Adoption was not something we ever considered, and it has never been talked about again. The mere image in my mind of our daughter being cared for by someone else; the idea of not seeing her and holding her every day hurt more than everything else we’d already been through.  That day, those words, that moment of truth was exactly what I needed. No matter how hard what we were dealing with was, we still loved our daughter more than anything in the world (that is why it all hurt so much). That was the point I realized I had to move past my self-pity and figure out how to help her.

Once my mentality shifted, the days slowly began to work themselves out. We found that Taylor Swiff songs would stop the crying for a little while, and a swing donated by a good friend allowed us all some sleep at times.  We sought early intervention through local therapist and eventually got our daughter into a special needs school. We found little ways to adjust our lives so that we could find our new normal, and I started back talking to God. I can’t really tell you when it all happened, when our “normal today” first took hold. Each day things just got a little better as time passed, and I am sure thankful for that.  Looking back on those early days is a blur almost like a dream. Some days the past doesn’t even feel real or it feels like a lifetime ago even though it’s just been three years. Other days, when something doesn’t go quite right, you can feel the pain again like it was yesterday.

Special needs parenting teaches you life lessons daily, but more than anything, it teaches you unbelievable love and incredible patience. It forces you to grow as a human and learn compassion for others like you have never known. At times your life spirals out of control. There will be days your heart stops in fear and other days it feels like your chest is going to explode with excitement. I’ve said it many times, but it’s worth saying again…even through all the heartache, I wouldn’t trade this life we are living for anything. And I am just thankful we were giving the opportunity to make that journey home from the hospital…again.

Published by Firefly on November 8, 2018: https://www.fireflyfriends.com/us/blog/coming-home-again/