I have been thinking about this post all day. I had a very disturbing, sad, concerning day at the hospital yesterday. It has made me think and ponder about how grateful I am for the feelings I have towards kids with disabilities. I have had strong feelings since I was a little kid. Maybe because when I was 4 my sister was diagnosed with a brain tumor and so I spent a lot of time with her at the hospital, surrounded by sick or terminal kids or kids with disabilities. I can remember being a little scared of some of the kids, because they were bigger than me and they sometimes made funny noises. For the most part I have always had a soft spot for them. It has also made me, again from a very young age, really appreciate my own abilities.
While Lance and I were dating I worked at a home for disabled kids. Most of their parents had signed over custody to the state because for one reason or another they could not care for these kids themselves. I was 19 when I started working there. I wanted to adopt every one of my kids in my group. I had the "mobile" kids and they were hilarious. I have a lot of really funny stories from my time spent there. I was so sad when the holidays rolled around and most of the kids had no family that brought them anything, or came and took them anywhere. I could not understand why these families would want to miss out on this blessing of these most precious souls. I don't live in a fairy land where it is glitter and rainbows. I know, quite personally, that a kid with special needs is challenging beyond explanation emotionally and physically and financially. I also know, quite personally, that it can be life changing in a great way. I always just wondered about their families and what brought them to the decision to put them in that facility. I tried really hard to treat those special kids like I would have wanted someone to treat one of my own if I had to place them in a home like that. I truly fell in love with them. A few kids died while I worked there, and it was pretty devastating.
As I moved into adulthood and after Trevin got sick, I made a few friends that had kids with special needs. When you have a "sick" kid you kind of join this crazy underworld group where everyone knows each other. It is fascinating. No matter the diagnosis or, as in our case , the lack thereof. I love these people. They helped me through the most difficult time of our young married life. They showed me, by example, how to be a great mom and treat Trevin like he was "normal". Thus we took him camping and swimming and shopping and for walks. One of my friends and I used to joke about how we were lucky that our kids couldn't move because the kids with special needs that are mobile are real trouble sometimes. You really can't joke about that with anyone but another person with a kid that can't move. It just isn't "politically correct". Sometimes we just had to laugh at our "situations" and find the silver linings behind the tragedies. When each of our kids have died we cried with one another because only we understand the true devastation of sending those giant spirits home. Only we understand how hurtful it is to hear someone say that your child must feel so much happier to be relieved of their sick body. That body that you love that housed that giant spirit that you yearn to be around again. Only we can understand that they have never been a burden. That we would give anything to hold them again, even if it meant you only get 3 hours of sleep every night. That is what caffeine is for, right? Really and truly sometimes people just can't imagine what you have experienced and how you could possibly wish for that life again.
It makes me sad to see lines in the world so blurred when it comes to acceptance and treatment of these special special, the very most special souls. I just wish that there was more information available to parents and doctors so they could hear more of the parents that get to take these children home and have them as part of their lives and families. I know that there will always be the ying and the yang. There has to be both sides. Not everyone is going to agree with the philosophy of Heather Walker. I just wish that everyone could feel what they might feel before they "decide" what is "best", because without all of the information how can they know? Exactly.
I just want Tatum and Trevin and anyone who reads this to know that I would not trade a single minute that I was able to have with my kids for anything. I also would give anything to have them both here, taking care of them. I say that with all sincerity. It was so hard to take care of our sweet babies. It was 24/7 care. Yet I would take those sleepless nights and worrisome days back in a hear beat. I am so grateful that our family was chosen to take care of them for their short stay here. In those short stays they taught us life long lessons. Things that we will never forget. They will forever be our examples. Their worth is beyond measure. Well done you two, well done.