Translate

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.

4 comments:

  1. So eloquently written. Thank you for laying it all out there for us. This is such a different way of thinking for all of us. I believe that some people rise when put in a situation that is difficult. And some people shrink. Those of us who are watching from the outside, so to speak, see you and David rising, not that we would expect any less. PS:When you were a girl you talked about having a "special" child. You've known for a long time.

    ReplyDelete
  2. Thank you for your honesty. I sure do love you and David.

    ReplyDelete
  3. Carissa, I want you to know first hand I am writing to you because my heart goes out to you. I know there is a lot under the bridge and I am not someone you prob want to hear from. But outside of that...in the realm of humanity when all those things are put aside. I want you to know I have kept up with your story and all that you have had to endure, and all that your family has endured. I did NICU nursing for many years so I am very familiar with the dynamics and the pain. My heart goes out to you and your family. We pray for your little one and for all of you. We use our monthly fast for your son. I understand the loneliness that you are enduring. It is such a hard place to be in. I have many friends and a family member that is special needs. They are so isolated and they have a hard time getting sitters so it is so difficult to find help so they can put any focus to other things, once they had their children come home. They are so grateful and humble but worn out from so many dynamics. I just want you to know that this time of challenge will pass and things will feel better as he grows. You will grow with him and feel more in control of the outcomes once he comes home. Having travel involved and all the responsibilities of mom, spouse etc is very overwhelming. I am hopeful that you have a lot of help. Utilize all the people you can and don't feel guilty. All of this is from the heart and we are hopeful and prayerful for your son and family. We will continue to keep you in our hearts and no response is necessary. We just couldn't go on without offering support to your home and heart.

    ReplyDelete
  4. Carissa, I want you to know first hand I am writing to you because my heart goes out to you. I know there is a lot under the bridge and I am not someone you prob want to hear from. But outside of that...in the realm of humanity when all those things are put aside. I want you to know I have kept up with your story and all that you have had to endure, and all that your family has endured. I did NICU nursing for many years so I am very familiar with the dynamics and the pain. My heart goes out to you and your family. We pray for your little one and for all of you. We use our monthly fast for your son. I understand the loneliness that you are enduring. It is such a hard place to be in. I have many friends and a family member that is special needs. They are so isolated and they have a hard time getting sitters so it is so difficult to find help so they can put any focus to other things, once they had their children come home. They are so grateful and humble but worn out from so many dynamics. I just want you to know that this time of challenge will pass and things will feel better as he grows. You will grow with him and feel more in control of the outcomes once he comes home. Having travel involved and all the responsibilities of mom, spouse etc is very overwhelming. I am hopeful that you have a lot of help. Utilize all the people you can and don't feel guilty. All of this is from the heart and we are hopeful and prayerful for your son and family. We will continue to keep you in our hearts and no response is necessary. We just couldn't go on without offering support to your home and heart.

    ReplyDelete