Battles against terminal illness, anxiety, and life!

In Response

The kids were all in bed and I sat very quietly in the glow of the television not really listening. How am I going to fix this? I know I can’t fix the medical condition, but how can I help him? Things had been so worrisome. Braden was angry and resentful of his sister’s budding skills. She had begun doing things he simply can’t and probably will never be able to do. He was being lapped and couldn’t do a thing about it. He would get angry and look lost. He had nowhere to go, nowhere to be. “Go to your room,” I told him when he would start yelling. “I don’t have one!” he yelled through tears. So, there I sat hours later wondering just how to make it better. That’s when I remembered a fellow A-T family who had reached out to Special Spaces. Over the past month, I have encountered so much along this journey, and I would like to take a moment to respond.

We have been surrounded with much love and support within our family, friends, and community. We feel thankful. Parents of children with special needs can often feel isolated. Our stress levels are that of those serving in combat situations. We don’t get many breaks from the stress as it takes a special person to be able to watch this brood. It’s a job we wouldn’t trade for anything, but it does create a life that we never would have imagined. So, that support truly lifts our spirits and helps us push through the tough times. We adopted transracially and have had our fair share of insensitive comments. We have met those comments with ease as we were prepared for them. We no longer notice the stares, smile at the curious, and have a solid family identity. At times we have been thanked for adopting a child through Social Services. We fully admit we have no halo, and adopting Braden was one of the most selfish things we have ever done. We didn’t do it to rescue some poor orphaned child. We wanted to become Mom and Dad. It’s as simple as that. He is our miracle. We are fortunate to have him. His adoption story is one of his favorites to hear. We did not know Braden would face these challenges, and I am always curious why people would even ask if we would have adopted him had we known. Those aren’t shoes we walked in and so I wouldn’t know the answer to that. The fact is, we learned of his condition the same way any of you would have learned had your child had it. You don’t return your children and he is our son.

We have encountered people who have been so extremely generous. Those people deserve more time and attention than those who have not been. The news is always full of bad news. Stories of the horrible things that happen in this world dominate the channels. I don’t wish to do that here, but I do need to address a few things. It takes considerable courage to pick up the phone and call somebody that you do not know and ask for help. There is a great fear of rejection and of just not knowing what will be said. Not everybody in this world is sympathetic, takes care with their words, or remembers their audience. I have been hung up on, asked if I was a scammer, told I was exploiting my child, and told that it was people like us that are “leeches on society.” It is my pure and unconditional love for my son that pushes me forward to make this right. I have tried to explain that we have searched for grants, saved our money, and if we could do this on our own we certainly would. It isn’t easy knowing that you need the help of the community to do what you need to do for your child. After all, it is a parent’s job to provide for their children. That job was redefined for us a thousand fold the day he was diagnosed. So, we had to get over ourselves and do what we need to for his sake even if that means encountering hurtful words. We do not feel entitled. We do not wish to exploit Braden. We simply want to provide him with what he needs. Even when his room and bathroom are complete and once he is wheelchair bound, he won’t be able to access any bathroom other than his own or any bedroom but his own. Could you imagine that being your best case scenario? That is our reality. It is what it is and we focus on the positive.

We don’t crave pity or attention. There have been a few bad apples that spoiled the barrel before us. What we do want is for people to understand, to listen, and to perhaps take a moment to reach out to not just our child but to anybody who is different. We ask for people to step outside their circle. We are all more connected than you may think. We ask that you take just a few minutes to watch a video about Braden and to learn. We ask that you talk to your children about people coming in different packages and how the packaging is less important than what is inside. We ask you to not just say that but to live it. To learn that having a mobility device does not diminish one’s intelligence. We ask that you encourage your children to say hello instead of staring, to befriend the child that is different, and to stand up for those who need them to. We are not leeches on society. We are parents doing what we have to do to help our child. We are you had your circumstances been different. We aren’t faceless and heartless people looking to profit off of our sick child. Words hurt. Word hurt a lot. This is the last time I shall address the hurtful comments along this journey. They don’t deserve more of  my time or attention. I don’t need praises from those reading this. We are normal parents put in extraordinary circumstances. We get frustrated, we dole out time outs, we lose our temper, we sometimes spoil them rotten, and act just like every other parent does. We just also happen to have to do things that are very very scary as well and live in a world where you can’t really know what will happen from one moment to the next. So, please just tell somebody that you love them today. Make an effort to say something nice and bite your tongue before saying something you probably shouldn’t today.

Sending you all love,

Becky

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