Thursday, July 21, 2016

Blinded by ignorance and bliss

 
Yes, this post is to all of you that see my son at the store or out and about with us. It's also for those of you that drive down our street oblivious to anything than the here and now...in your little world.

See, you see a quick glance of our son. 
You see the meltdown...tantrum as its commonly referred to for the typical child. The kid that cant talk but babbles with sounds, yelling and...well...sure, it can be disruptive. You see us at church...sitting in the back because he is quick to start yelling sounds out...loud, or have a "moment" where he doesn't care that the priest is in the middle of his homily. You see the kid that is standing at the curb, in front of our house, waving as you drive, walk or bike on by. You also see me right behind him or close by...making sure he's OK.

This also goes out to the inconsiderate driver that drove by tonight...as my son was by the curb waving at you with a big smile...and you waved back by waving with your middle finger at him. flipping off a nine year old little boy...from an outsiders perspective. Nice.

What you don't know is that that little boy who you flipped off, who you glare at for disrupting...anything...of whom you look at us for not being able to keep our kid under control...who is a spoiled brat...

What you don't know is that he is a fighter. Not in the sense of bully...but who has and is actually fighting for his life. See, our little boy...this little boy that you look at as being rude, unruly, retarded, whatever...was born at the earliest a child born early could possibly survive. He has been through more in his little life than you probably will ever face...ever. This little boy could have given up, but chose to fight for his life...and continues to fight because of all of his brain issues and lung issues brought on his and his twin brothers very early arrival. 

What you don't see, is the struggle that his dad and I are dealing with...daily...no...hourly. All his medical needs, the not understanding what his babble means, why he repeats insignificant things 50 times in a twenty minute time frame...all. day. long. His gathering things from all of our important papers that we think we put away...but he found them to his toys and canned goods, cutting papers, not knowing what danger is...at all.
...And yes, his meltdowns. The meltdown that you have seen is nothing in comparison to the ones we experience hourly. We have bruises on us, broken items and holes in our walls to prove it. 
I want to tell you...actually, yell from the rooftops down to everyone of you that what you are seeing as an outsider is nothing compared to what we experience daily. I don't think we are bad parents. We get angry, punish and also praise our kids...all of them. There is no instruction book on raising kids...especially a special need child...so, no...we didn't read it...because honestly, we don't have the time or the energy to do so.

What you don't see is the fact that we, as parents and his siblings, are exhausted and beaten down emotionally and physically. We get angry at ourselves for getting frustrated at our son. I've gotten angry at God for taking my sons twin brother after I thought nothing horrible would ever happen to my kids and for giving me a special needs son whom I have no idea what I'm doing (as far as parenting goes). We've lost friends, family and basically, we are alone in this struggle that no one but us understand. 

When I was younger, I was never exposed to anyone with special needs...heck, I honestly can say I didn't know exactly what special needs meant. Up until 7 years ago, I always thought that being developmentally delayed meant that my son would catch up developmentally...which, I have found out that that is not at all what it means. I am struggling to learn sign language and understand almost everything that my son is trying his very hardest to tell me. I am tired of wiping a nine year old butt, giving him tube feeds through is stomach...4 times a day. I am tired of therapies, doctor appointments and prescription and supplies refills. We are tired of him wandering off with one of us having to chase after him. We are tired of wondering when his next seizure will take place, if and when he gets sick with a cold...if this will be "it". We are tired of doctors and therapists telling us that he will only able to do this or that...like using a communication device for conversations because his apraxia of speech and his moderate to severe hearing loss is just that bad.
We are tired of him being considered "special needs and chronically ill"...period.
We are tired of hearing (but very grateful) that he is being granted a Make A Wish...because...we know his life is shortened...and that we will have to bury another child...and we really cant fathom this concept considering I am now (9 years into this journey) just feeling a little bit more human lately. 
See...you wouldn't understand our hurt and struggles because you choose not to think first before you react and criticize my son or us as parents.

He has come so far in this life (and honestly, because of him, so have we). I would never wish this life on anyone, but honestly, it has opened us up to a whole new life. The little milestones he reaches are huge for him and for us. We are blessed with a child that will stay our child for just that much longer.  To see him smile and get excited to see someone wave back at him or acknowledge that he is waving or trying to talk to him is the best. He radiates love and strength. The babble and loud "talking" is only because he cant hear very well, so he really doesn't understand that he is loud...we're working on that. Oh...and you may or may not see hearing aids...well, he loves to lose them...so...yeah. Its like playing charades daily with him when asking where this or that is...

You don't see how hard he works at speech when at speech therapy and here at home...he really is trying to be normal...typical as everyone in the special needs community says.
You don't see how bad he wants to play sports like every other kid his age. 
You don't see how sad he looks when he sees kids his age ignoring him because he is different.
You don't see that he just doesn't understand or feel different than you and me.

So when you make fun of, ignore, or even flip him off as you are driving by...when he is just being friendly and waving at you...please know that I...that we (my husband, myself and our other children) see it and know that you have not had half the heavy load of a life that we all have had these past years. We know that you are blinded by ignorance and bliss of a non stressful life which doesn't have room for the death of a child or stress of a chronically ill/special needs one. You and you alone will have to live with the fact that you know nothing about our son and our situation that we are facing daily...and I pray that you will, one day, under what your actions or lack of means to us and to a 9 year old that has a harder life than you will ever imagine. That everyone has feelings...everyone. That we wish no harm or ill will towards you or anyone you know...we just want you to understand.
God bless you.




1 comment:

Anonymous said...

Very well put Michelle! I could never imagine going through what you go through on a daily basis. You and your family are very inspiring to me. I only hope and pray I can be half the parent to my children as you are to yours! God Bless!!!