September 19, 2016

Special Needs Doesn't Make Me Special

***I've been contemplating writing this for awhile. But it's starting to take a mental toll on me, and I feel like I need to get it out. If at any time something I say sounds passive aggressive, or snarky, or even like I'm "proud to be humble" (if you know what I mean), then throw that preconceived notion out of your mind before reading on. Because the things I have to say are truly sincere, raw, and heartfelt.***

I feel like ever since Aiden was born, and the term "special needs parent" was promptly placed upon my head, I've been having a bit of an identity crisis.

I've shared this with very few people in my life, but I've always thought I would have a child with special needs. David could even recall to you a time when we were engaged and I asked him if he would be OK with having a child with special needs. Of course, he was. And probably thought I was a little crazy after wards as well. But he married me anyway, so things panned out for me after all.

Fast forward to my pregnancy with Aiden, and this feeling was manifested to me again. The day I found out I was pregnant, I was in the dollar store when a sweet young man with Down Syndrome came up to me, said, "You are beautiful lady!", and gave me a big ol' bear hug. I happily hugged him back, and as I did so, a clear voice came into my mind that said,"This baby will have special needs."

As we neared our 20 week appointment, the thought stuck in my mind constantly. There were many times I thought about asking David if he ever thought this baby could be special, but something always stopped me. I was afraid. Afraid I would sound crazy, afraid if I said it out loud it would have come true, afraid that this baby would end up fine and then I wouldn't just "sound" crazy - I would actually be crazy. I never ended up saying anything to David, and this is the first time he is finding this out as well. (Hey, honey! Surprise! I never told you my feeling about Aiden... Sorry for being chicken. Love you!) When we had our 20 week ultrasound in my OB's office, and the ultrasound tech kept re-doing the same measurements over and over again, and my doctor entered the room asking us to sit down... I knew at that moment I was right.

I was afraid and mourned not having a "normal" child, but eventually felt like officially wearing the hat of "special need's mom" was going to be alright. I had to learn to love Aiden for being who he was.

After he was born, I quickly realized that Aiden was just that, Aiden. He is exactly who he is supposed to be, and came to this earth in a perfect body for him.

There are many moments that I still mourn what could have been for him. I'm angry, saddened, and mentally scarred to have witnessed the things his tiny body has had to endure. I'd give anything to take it all away from him and place it on my shoulders instead. I'd gladly lay in that bed for him if it meant all his pain was taken away.  But through these moments, I have to remind myself that the only reason I mourn what could have been, is because I realize what could have been. If I can raise Aiden the way I hope to; having confidence, being independent, and loving himself for who he is, then there is no reason to mourn "what could have been". We only need to celebrate what is!

As I stated at the beginning of this post, I have been having an identity crisis. Ever since this hat was placed on me, I've noticed everyone around me has been treating me differently. But I don't feel any different. I mean sure, I'm a walking zombie, I have more zits then I've had since I was 14 from stress, and I know more about the medical world than my naturally-squeamish self thought I'd ever know... But I still feel pretty much like me.

I can see I've grown in ways, but not in ways to justify the changed attitudes of people towards me. It's an uncomfortable place to be in when people treat you in such a different way than how you feel about yourself.

On another side of the coin, so many friends have disappeared from my life. I'm not sure if they are uncomfortable with the medical-centered life I now live, or if they think I no longer have time for them. Perhaps my situation is not comfortable for people to be around? Whatever the reason, it hurts. I came to find immediately that the life of a special needs parent is a very lonely, isolated life. When you are knee deep in a very new, stressful, difficult world, loneliness makes it that much more difficult to cope with it all. And it's strange place to be in to have lost so many people, and then have some individuals in my life look at me with this odd sense of awe at the same time. Is that awe pity? Reverence? Saddness? It's hard to decifer, even if it's meant with sincerity. And no matter what it is, it's an uncomfortable spot to be in.

We know that our Heavenly Father is a God of law and order. And we know that as the creator of all things, He also created the laws and rules behind all the sciences. He did this so He could push go on Earth, sort of speak, and let the laws of nature He created unfold. Does He sometimes intervene these laws and create His own? If course, that's His right as God of this Earth. But we also know that He doesn't create every rainstorm we have either. He set the laws in motion for our Earth to do that herself.

Now someone is welcomed to disagree with me, but I think this same rule can apply to us. I truly don't believe Heavenly Father picked David and I out of a crowd of all our peers and said, "Well, you are stronger and better than all these other people, so therefore I'm going to send you an extra special child to look after. " I think it's ok to sometimes think that the laws of science and nature simply happened, and because Heavenly Father allows His laws to take place, those special children get a chance to come down here. And being the loving, just God He is, He'll prepare those families to receive and take care of those children accordingly. He began to prepare me by giving me those feelings during my life. He knew I'd need time.

I think this idea that David and I, and anyone else with a special needs child, must be exceptional people in order to have a special needs child divides our communities. I realize it's not intentional, but when you think of someone as being better than you, you are in turn placing that person beside you. It causes you to think about and treat that individual person differently. Believe me, the divide is real, and it hurts, no matter how unintentional it is. It's a very uncomfortable world to be thrown in to.

Trust me when I tell you I'm no stronger than you. And further trust me when I tell you that if you were in my shoes, you'd be able to do my life as well. After all, all of us already do all we can for our children. My child just happens to have more drastic needs to be met. But you also know you'd do the same if you needed to. I'm no different than anyone else and I'm still the same person. David and I still want to go out on a Friday night and have a normal conversation with friends. If you see us at the store, please come say hi. If there are scowls on our faces, I promise it's just sleep deprivation. But lucky for you, sleep deprivation makes us loopy. There is no need to think of us differently or treat us differently.

I've come to find our society misconstrues the term "special needs". We tend to put emphasis on the word "special" as if it's a noun and attach that to the individual. But the phrase is special NEEDS. Special is the adjective describing the needs of an individual. And if you were to really think about it, each person on this earth has special needs. I'm nearly entering my 30's, and I am still terrified of the dark and have to sleep with a night light. I'd say that's a pretty special need for myself. If we could just shift our way of thinking when we hear the term "special needs", it wouldn't subconsciously create such a divide among us.

One of my biggest hopes and wishes is to have Aiden live a life where he won't be treated differently. If I could create a perfect world for him, I'd make sure he was loved and accepted in every way and by every person. It scares me to think that the world we live in is the very opposite of that. I feel like I'm getting a little taste of the divide he'll feel his entire life - and it's no fun. But I'm determined to not let the world get in his way no matter what.

The Longest Two Weeks Of My Life

This amazing little boy is determined to not let anything kick him down. Once again he's baffled his medical team. A doctor told me he's seen much healthier babies succumb to much less illness. And while we still have a long way to go, we are starting to get there again.

Aiden wore his EEG and was on video surveillance for nearly four days. At one point his seizures were so bad, he was having one every five minutes. My poor husband stayed at the hospital for 13+ hours a day during this time. He couldn't touch or get near Aiden during his seizures to ensure the nuerologist team watching him could get an accurate EEG reading and video of how his body was acting. So David just got to sit there, watching our baby have seizure after seizure, and couldn't do anything for him.

Watching our Aiden helplessly convulse over and over again, while being powerless to do so much as comfort him, is a nightmare for any parent to experience. I'm glad David was there for him during those awful hours. Aiden's little sister Lydia has seizures herself, and I sit and cry each time as I hold her during her convulsions. She always wakes up afterwards and says, "Mommy, I just had a seizure..." and it kills me inside. Watching Aiden go through that while not being able to go near him would have broken me completely. I'm thankful David had the strength to be there when I couldn't.

His neurologist explained to us that sometimes when you get sick and have seizures caused by a high fever, you get a short in your connection somewhere, and your brain gets stuck in a mode of having seizure after seizure. You have to medically "restart" the brain to get you out of that cycle. And in order to restart medically, you have to use drugs.

So we gave him four different seizure medicines separately over the span of nearly two days. Each med seemed to work for a period of time, but after a few hours the seizures would start up again. So his medical team finally decided to try medical paralysis. They gave him a big enough dose that would have equaled going under general anesthesia, with the intention of limiting as much brain activity as they possible could. I tell you, I was up all night waiting for phone calls from our nurse with updates! And as an answer to many tearful prayers, that seemed to do the trick. His brain restarted, seizures stopped, and for the first time in a few days, he went into a REM cycle as he slept.

The next day Aiden finally woke up, but his eyes were stuck at the top of his head as if he was staring at the ceiling. He wasn't able to bring them down or move them at all. So he laid in his crib, distantly staring at nothing, and barely moving the rest of his body. Everyone was convinced it was a sign of exhaustion, and the key was to see small improvement of gaining control of his eyes again.

They wanted to do an MRI to see if any brain damage had happened from the infection. When the day came that he was stable enough to travel downstairs for his MRI, I was a nervous wreck. And of course, we had to wait a full 24 hours before we heard back from anyone. No sleep happened that night, and I could barely function the next day as we waited. But when the neurologist finally came to share the results, his entire medical team and David and I was once again stunned. The MRI came back showing NO brain damage. We were all floored and overjoyed. What another huge miracle we were blessed with. However, after the sickness and his seizures, our neurologist told David and I not to be surprised if he regressed developmentally. She told us that he will need to learn how to reach out at toys, smack his lips, track, and even smile again. I took that news pretty hard. Even after the good news of no brain damage, I was crushed to hear that.

Each day he has been making a slow progress towards being himself again. After a week his eyes were no longer stuck at the top of his head. He is having small moments where he is engaged and acting like himself. When he's like that, I can see the sparkle come back to his brown eyes. My sweet, bubbly boy is there. But those moments have been brief, and you can see the sparkle fade, and he becomes lifeless again. It's so hard to deal with. As I see the light fade, I'll call out to him. More and more he is starting to come back when he hears me. But still most often, as the light fades and he checks out mentally, he sits and looks right through you. Almost as if I'm holding a baby doll, and not my baby. It's been very hard for me to cope seeing him like that. The few moments that he has really looked at me have been what's kept me going these past few days. I hope and pray as the seizure meds wean off, he will come back to me completely.

This past Sunday when the girls came to visit, he did look right at them - and gave them a big smile! I was thrilled to see that! And he has started to slowly move his body and "talk" to us. He has yet to try and reach out to grasp toys, track with his eyes, or smack his lips again. A part of me feels very impatient to have my Aiden back, but I have to remind myself it takes a long time to come back after being so near death.

September 01, 2016

So Many Uncertainties

This week I feel like I've been walking through a nightmare that I can't wake up from. I'm having such a hard time processing how a UTI could turn into something like this.

The good news in all this is he's showing how incredibly strong he is. We were worried about this turning into meningitis for a few days. But even if it had, the three different antibiotics they have been giving him are also for that. And since he was already in the hospital, we caught it before we think it could have done any major damage.

He's also had zero respiratory issues during this, which shows his strength as well. His oxygen needs and vent numbers have never looked better or been lower.

They have been poking him for blood every 6 hours to check on the infection. The bacteria in his blood is showing less and less, proving we are on top of the infection and the antibiotics are working.

The bad news is that his EEG showed he's having seizures. Everyone keeps telling us they don't think it's permanent, it's most likely from being so sick and his high fever, and they have started him on seizure medicine.

Everyone also keeps telling us it's because he's so sick, but my bubbly little Aiden is gone. He's like a vegetable right now. He hasn't woken up in days. The only time his eyes are open, they are rolling into the back of his head as he's seizing and incoherent. Aiden has disappeared mentally, and I'm nothing short of devastated.

Yes everyone says they think it's because he's sick, but what if it's not? They can't give a for sure "it's because he's sick", it's always a statement of, "we THINK it's because he's sick". That word "think" terrifies me. What if this caused him permanent brain damage? What if he never wakes up? What if my sweet, expressive little boy that lit up as I walked in to see him each day is gone? What if he never catches himself halfway through a smile, only to force himself to pout as his eyes twinkle from knowing he's being silly again? Will he ever smack his lips at me after I kiss him? Will he ever wiggle in delight again as I munch on his squishy cheeks? Will he no longer wake up and squirm with excitement when his sisters come to play?

And if he really is ok, when is he going to wake up and be himself again?

I'm crushed. We were so close to the end of his NICU stay. For the first time, I could see a real end in sight. He was happy and acting like a normal baby. He didn't need any extra medicine for almost two months. We were weaning his sedation with no problems because he wasn't needing it. All we were doing was waiting for him to grow big enough to start trials on the home vent. And then suddenly, our entire world came crashing down on us again. Suddenly my baby is mentally gone, and so sick I can't hold him again.

I find myself feeling so incredibly angry as well. Why did Heavenly Father allow this to happen? He is perfectly capable of just letting Aiden have a simple UTI. Is it really necessary to continue letting him suffer? What was the point of letting him get so sick he was on the edge of death again?

It's nothing short of torture to have to helplessly watch your child suffer. And in spite of all the miracles we've had, all I can feel is a deep anger towards God right now, while also desperately pleading with Him to give me back my happy baby.

I'm so scared for the future. I'm so scared for his recovery. I'm so scared that he is never going to wake up. I'm exhausted and angry and anxious and heartbroken. And it's so hard trying to act like all is well around his sisters to shield them from undo stress. Makes this situation that much harder to pretend to be happy when you are screaming and crying on the inside.