Wednesday, April 17, 2013

Bonus post

I don't often post twice in one day, but I felt this post should stand alone (see previous post for update on Reagan's day today).

I was talking to a long distance online friend of mine today on the subject of having a special needs child and not knowing whether or not you should have another. Do you take the risk of having another child with the same medical issues/disability just because you want another child? Tough decision. Thankfully, we didn't have to make it. Ryan was a surprise...a gift from God, if you will!! It's probably a decision we would not have made. It's like playing Russian Roulette with your child's health...if you don't know the genetics behind your child's disease (or even if you do). Scary to say the least. Obviously, Reagan has blessed us in ways a 100% healthy child never could...but does that change the fact that we want/wanted a perfect, healthy happily ever after life for her? No! I think it's just so hard for those on the outside to realize what it's like for parents of special needs kids. Most people (and this is including me before Reagan) don't want to know. They look at people like us and feel sorry for us, but tend not to go further, dig deeper. Things like this happen to "other people" not people like "us"! Untrue, so untrue. There's a blog I read, Just Another Ordinary Miracle, and Ivey's mom wrote the most amazing post about the life we live as parents of special needs/medically fragile children. I urge you to go over and read it. Ivey's mom Gwen is a beautiful writer. It will surely open your eyes. To me, this life is even more difficult for those whose first or only child is medically fragile/special needs. I can attest to this because this is our situation. For 5yrs we only had one child and although she's opened our eyes and made us much, much better people...we've also become very isolated. We have very few friends and rarely ever get out to do anything that's not with other families affected by mitochondrial disease. Maybe we've become jaded, or are just too much of a Debbie Downer for our old friends to handle (I literally lost a childhood friend because she told me it was too much for her to listen to my problems...when my child was seizing over a 1000 times a day), but we need human interaction too. I think it's the fact that people living in the "normal world" just can't relate to us any more. Their complaints and frustrations seem minuscule compared to what we deal with on a daily basis and that makes them hesitant to confide in us. To relate to us. I'm hoping that Ryan will be our link back to "normal". Expose us and Reagan to what everyone else does on a regular weekend. Soccer games, t-ball, etc... Help us to meet new people, make new friendships, and get Reagan out and about a lot more! As special needs parents you eventually establish a "new normal", but that is still so far from what typical society views as normal, and you're still left with that feeling of isolation. I don't know. Just my thoughts. Did you perhaps see the footage from the Boston Marathon of the girl in the (rather large) stroller (those of us with special needs kids recognize it as a special needs stroller) being pushed away right after the bombing?? I did. My eyes immediately were drawn to her and I wondered what her story was. Well, I saw an article today about her and she has Mitochondrial Disease!!! She's 18yrs old and her mother ran the entire race pushing her! They were just crossing the finish line (with her mother's fiancĂ© and her uncle who joined up with them at the very end) as the bomb went off! Her uncle was hit in the ear with some shrapnel but everyone else was fine. Click here to read more. 
Also...please pray for those affected by the explosion outside Waco tonight!


Kristy said...

Great Post! Love you guys!

the Grandma said...

Beautifully stated! I am so proud of the mother that you have become. You have blessed my life more than you will ever know. I love my grandchildren more than I can ever say and I am so proud of all of you. I can truthfully say that I am a better person because of you and my precious grandchildren. I love you all.