Everyone makes decisions everyday of their lives. Some are rational. My gas tank is empty – I think I should get gas. There is no emotional part to that decision, except maybe when you pay at the pump. Some days I want to cry about the prices, especially when I can remember $.99/gallon. Then there are the emotional decisions. Letting a sick dog go, visiting a parent even when you haven’t had an easy go of it, spending time beside the bed of a loved one. These decisions aren’t as easily made but they aren’t as frequent either. You might make 100 rational decisions a day and only one emotional one.
Except if you are a special needs parent. Our days are filled with decisions that have to be made that can literally turn from rational to life or death in a matter of moments. You can put a child to bed who is relatively well and happy to awake to find the complete opposite the very next day. Your world completely upends almost every day. And so goes our life recently.
We had been riding the wave of luck for so long it almost felt as if the worst was over. Somedays. But alas, never is the case with a child with HIE, Cerebral Palsy and Epilepsy. Diabetes Insipidus is usually our constant worry. It is never in the back of our minds. If you think the weather is fickle, meet electrolytes. They make the weather look predictable! The constant blood tests, weighing diapers. Let me tell you, no parent ever imagines weighing and recording diaper outputs… ever. That’s something they don’t show on Pampers commercials. And everything had been going so well. Of course, that’s when things are the most likely to fall apart at a moment’s notice.
We were eating solid purees, not just eating them but ENJOYING them. We had moved to a sippy cup and had been actually discussing trying to move up in nipple size because he was sucking them so well he was collapsing the top! He was eating and drinking everything without a single issue. We were on square 40 at this point and had been moving quite rapidly!
Then it all changed. In a moment.
Well I guess it wasn’t quite a moment, but it felt like it. We have been on multiple seizure medications for a while now, controlling the seizures but never getting completely rid of them. Now the funny (its not really funny but you get it) part about infantile spasms is that even though they are less, they are still devastating. They delay development drastically. Just for an example: when he started having seizures at 6 months actual his head circumference was 33cm. Yes, that is small to begin with, he has microcephaly from the brain damage as well as one side being flat. It had been growing at a rate of 1cm every few months about. Once he began having infantile spasms at 6 months, his head just stopped growing. Stopped. Not slowed down, not gradually stopped, dead out stopped growing. At a year old, his head – still 33cm. That is smaller than typical newborn sized hats in the store. Now you can see why the hats that were donated to us from Knitting Rays of Hope are so important to us. Literally nothing fits his head except Build A Bear. Do you know how many actual warm hats they have at Build A Bear? Zero, yup you guessed it. Because why? Bears don’t actually need to keep their heads warm! However Superman does. Limited options. Good news is once we figured out a medicine regimen that helps control a lot of the seizures he did manage to grow to 35cm in 6 months. Which is where we stand now.
So all of that to say – infantile spasms. There is a front line drug out there called Sabril (vigabatrin). I had heard many success stories about it, and we decided to give it a try despite the fact it can cause vision loss. Superman is already legally blind and his vision will never improve if he is still seizing so we decided the benefits outweighed the risks – rational decision.
Now what we weren’t prepared for was the emotional decisions that would come after starting this ‘miracle drug’. And I am not being sarcastic or overzealous. Almost immediately – seizure free. We slowly tapered the drug to full dose and now we are seizure free. But what we weren’t prepared for was the unintended and unforeseen side effect. Dysphagia – or better known as ‘difficulty swallowing’. I am not going to bore you with the details so click the link if you are interested in learning more about what the symptoms of dysphagia are.
Here’s what you DO need to know about it. It’s dangerous. It can cause aspiration into your lungs. Aspiration can be deadly. Aspiration into your lungs is the equivalent of slowly drowning. Very, very slowly, and painfully drowning. It’s especially a concern in non verbal, non mobile children who typically do not show signs of pain or distress because they will not appear to be aspirating and have no way to tell you what is going on. Superman protects his airway by not breathing. Watch your child turn purple at a dinner table with your in-laws. Talk about terrifying. Although, I did my best to hold it together on the outside (I think) I was absolutely TERRIFIED.
So at this point we have to choose between rational and emotional decisions.
Rationally you need your child to stay alive, and he isn’t tolerating ng tubes as well (nasogastric tubes that go through the nose into the stomach) – so the other alternative is to return to the g-tube (tube that goes through the skin directly into the stomach). The decision is easy – rationally speaking. You will do what you need to do for your child to survive. – The other reason this is so important is because of the diabetes insipidus mentioned earlier. If he becomes dehydrated in any form his electrolytes will go out of balance and in conjunction with his seizure meds that the risk of dehydration is higher – can send him into shock – and ultimately death. And you thought the life or death part was over, right?
Emotionally – your are on square 40 now – Superman has worked so hard to get past the tubes. The last tube he had was so painful we couldn’t even hold him. He never cried at that point, except when you tried to hold him and touched his tummy. That is devastating for a parent. We busted our butts with therapies and diligence and just plain hard work and dedication to get to square 40. And here we are – immediately sent back to square 1. We didn’t pass go, we certainly didn’t collect $200 – the game of life does NOT resemble any of the fun board games by the way. My heart breaks for him. We have come so far – and now we have to go 39 squares back. And maybe it’s not really that far back, since he is still eating purees well as long as they are super thick. Maybe its only square 5. But it’s not square 40. And that makes my heart break for him.
Special needs parents have an uncanny ability to make the most rational of decisions in the most emotional of moments. We might do it while sobbing our eyes out and might needs someone to translate the sobbing babbling. But you will know the parent is making the best decision for their child when the words come out. Who else can pour every single thing into the life of their child but look at them and know when the fight is over and let them go. Ask any parent who has signed a DNR – every emotion in their body is screaming at them and the paper might be tear-stained when they hand it back, but if it’s truly the best decision for their child, the rational decisions know no limits. It’s not something you can ever prepare for. It’s not what you dream about in the quiet moments of pregnancy. But once you are in the fight, you learn. You become stronger. You feel everyday in your heart and your brain. Each and every day comes with life altering decisions. And I wish that was an understatement. And learning to let the rational decisions come out even though your body is screaming at you, your heart is telling you to run the other way and protect your child at all cost even if that means the two of you hide in a closet forever. You learn to make the rational choices. In therapies, surgeries, and through all the rough times.