Sitting here this morning and thinking about everything that has been going on these last 5 years. Thinking back to how an event in one's life could change the course of everything. Be it good or bad, big or small...it happens all the time. I went through the what ifs, the anger and the sadness. The sadness is mixed in with frustration and at times shows its ugly head. I think that's where I am now. I am frustrated at how I want Kenny to communicate yet I know he is trying his hardest TO communicate. I get frustrated with the doctors because they are telling me things that I know, but no one is sure what's really going on or what will happen in the future. Sure, I know that no one is a fortune-teller, but for me...and for this sadness/frustration part of me, I NEED to know what we are in for.
My dear friend and her family have a child Kenny's age who has Mitochondrial disease...I'm sure you followers that have followed this blog have heard me talk about her in the past...well, they have come to the part of their journey where they have their beautiful son in hospice. They threw a celebration for his birthday (which is in July) yesterday because they just don't know how much longer he will be here on earth. The pictures that were and have been taken are something that is short of breathtaking. Their faith...truly amazing...and their love for their children shines like the brightest rainbow over a lake! I love to write, but as I write little messages to her on FB...I have no words. I just want to hug her and tell her that she is the best mom ever for giving her child the best life possible...even with all the hospital stays, meds, wires/tubes AND the unknown. I've been where she is. Sure, many will say that losing a newborn is not like losing an older child..."there isn't that bond, the memories, etc"...but there IS. I may have only had 2.5 days with my son, but I will have a lifetime with the emptiness that he has left in our hearts...the place in our family where he was to fit perfectly. God bless them.
Friday I went to the hospital with Kenny to get his hearing re-checked for new hearing aids. He is a little older now, so he is more responsive to the testing. Which in turn, makes it more actual as to what he can and cant hear. And sure enough...he is still at the severe level. Since losing his hearing aid at Sydnies communion (through an autistic fit), he has been using only one aid. He will continue to use one until school starts and then, we will see about a new set for him. We are trying to get the kind that will fit a personal FM system right to it. It will be great in group settings (school, or even here at home), so he doesn't get all of the garble of many people talking at once. Anyhow, after that appt., I needed to get a copy of his medical records and a copy of his MRIs for a second opinion at the Cleveland Clinic. I love what Metro has done for my son, but I think I need some reassurance that we are doing everything possible for him. I want to make sure that we are not over looking something. I just want to be sure. I guess I am also wanting some validity as to my feelings of frustration and sadness as well.
I hate the fact that every time we (Tony, myself and the kids) go into a store and Kenny starts with his extremely loud vocals...no, he doesn't scream and cry (well most of the time anyhow) but he is exceptionally loud...to the point of, if Tony or the kids separate from Kenny and I...they'd be able to find us very easily...heck, even if they went outside of the store, they'd be able to know what store we were in. The looks and stares we get from people...its almost funny. I think we should make a sign that reads...forgive my son, he has autism and is deaf (on top of many other issues)...whats your problem! I think that will get people thinking and stop judging. We also get the people who come up to us and bless us...not just for having lots of kids, but for raising a son with "special needs". Sometimes I want to scream and yell (yes this is the sadness and frustration part of me kicking in) that what I deal with on a daily basis is NOT EASY. I don't want peoples blessings or sorry eyed looks at me...telling me that God only gives those special parents, special children...I don't want to be that "special parent"! I want to be a normal parent who doesn't have to give meds throughout the day, who doesn't have to give tube feeds, who doesn't have to worry about tomorrow, who doesn't have to "live each day like it was the last". I want to be able to go on a vacations with my husband and all my kids for a week or even a weekend so we can regroup and get refreshed from the everyday stresses that we face. Stresses of having a child who cant tell me whats wrong scream and cry for no apparent reason...all day long, every day. Stresses of Gastronomy tubes that when hooked up, leak stomach contents for almost an hour into a backpack worn by a child...only to be noticed when I go to see how much longer he has on his feed...yeah...it wasn't a pretty picture. Stresses of having a child run off and be scared of losing him somewhere. Stresses of several meds all day long, every day. Stresses of wondering if this or that is normal or when his next seizure will take place...and will I/we be ready (emotionally and physically). I want to be a normal parent. I want to have a normal, not sick child. I want to have a normal family and not get so worried about a million things. I don't want to have memories of watching my son die in my arms or having to bury a child. I want all this but know that it is a far cry from reality...
So If I seem a little stressed...its because I am. If I seem a little sad...well...it comes and goes and I will be fine. I trudge through each day...not having time to worry about petty things that happen in life.
I didn't want any of this, yet it is who I am now.