Do you remember the first time you drove a car all by yourself? Do you remember what you were doing and where you were when the planes hit the twin towers? Can you recall your first kiss? Some of our memories are seared so deeply in our heart mind and soul that they become a part of the very fabric of our lives. These experiences are normally filled with emotions which act like a highlighter pen capturing and emphasizing the event or person or location forever in our mind.
One of the memories I will always carry with me is telling Chris and Dan that their brother David was going to die as a result of his disease. “Your brother has Batten Disease, it is untreatable and always fatal.” Even typing the words makes me nauseous again. My few words and the experience of the following years changed my boys forever.
For thirteen years Chris and Dan labored, loved, and cared for David with us in their own unique ways. They fought and played like normal brothers. Sometimes they celebrated the fact that because of David’s white cane and obvious disability we were ushered to the front of the line at Darian Lake or the Empire State Building. Other times they felt alone and ignored and I am sure at times “less loved” because of the extra effort and time it required for us to care for David. Chris and Dan dealt with David’s illness each in their own unique way.
I asked both of them if they would be willing to share something about being David’s brother. I am so proud of my two boys and the men they have become. Thank you for listening to a part of their story.
I think it must be hard for some people to remember that to me David was just my little brother. We had already developed a relationship before his diagnosis and for a long time nothing but his sight was affected by his disease. David drove me nuts, tried to get under my skin, and was a pesky little brother following me and my friends around all the time. I didn’t think about him as “my special needs brother,” as “blind,” or as “poor David.” Sure, sometimes I didn’t consider his disability the way I should have, and I wasn’t as gracious or kind to him as I should have been, but that had absolutely nothing to do with the fact that he had a disability: he was my brother. We fought, played, and stood up for each other like brothers do.
More than even their parents, I think siblings of special needs children have an easy time thinking about their sibling as a person. We understand that our siblings need more help than we do. We know that means less time for us than if we had a typical sibling. We also wouldn’t trade our sibling for the world. Parents: don’t treat your kids like they don’t understand this. Your kids can feel as alone as you in this, but the reality is you’re a team and you can both support each other. By spending just a little time with them,
Being David’s little brother was a challenge that crescendoed until his death in 2009. Our interactions in life until he was about 14 years old were pretty typical for brothers 4 years apart. We fought, played games, I “spied” on him and his friends, and I tagged along with them as often as I could. Around age 14 David’s disease started showing its ugliness and he began having difficulty with day to day things. This got worse over the years. Eventually, he could no longer bathe, eat, walk, or talk.
Watching his progression towards death (literally his brain cells dying) was incredibly difficult for me to deal with. I was overwhelmed with depression and anxiety and was unable to focus on anything but making pottery and searching for ways to escape what I was feeling. I began seeking respite in anything that would distract me from his decline, spending lots of time with friends, riding my dirt bike, and making pottery. I also snuck alcohol from the liquor cabinet, took my prescription pills in a way I was not prescribed, and used anything I could get my hands on to escape the reality of my brother slowly dying. Too much alcohol or a bad combination pills could have ended my life and devastated my family. All I wanted was freedom from my depression and for the anxiety to stop. I could think only about ME.
I have to thank God for preserving my life through those “Dark Ages”. I was selfish and desperately needed to understand the truth of Romans 8:28 which speaks of God working all things together for the good of those who love Him [God].
My parents loved us a ton. I remember it would come up in conversation amongst my friends that they are great, and it’s true they are! I don’t think this is just a coincidental trait of theirs; I see now that they sought to honor God in the way they raised us three boys. They disciplined us in a way that allowed us to understand the consequence for disobedience, to understand respect for others and for women, they raised us in the truth of the bible, and loved us unconditionally. Even through all of the pain and suffering I caused my parents in choosing the easy way out with alcohol and foolish decisions, they chose to love me and never expressed that the opposite was true. Even when they were utterly displeased and disappointed in my decisions, they made sure to tell me they loved me and cared for me. This is so important. I knew my parents loved me even if their attention was placed on David in an unequal amount of the time. Even when I felt neglected or second place, I never experienced the question of whether they loved me. I can’t say it’s the most important thing for a child, but knowing that their parents unconditionally love them is pivotal to their emotional health.
If there is one thing I could have changed, it would have be my perception that I couldn’t come to my parents with my struggles. That I couldn’t tell them the truth about what I was feeling, or thinking, or desiring. I was fearful of their response and didn’t want to cause them any more upset than they already had with David’s sickness. This was foolish of me and I wish I would have taken advantage of their Agape (selfless) love for me in that time.