Life with Super D is filled with varying degrees of challenges. Unfortunately, they all add up over time. Eventually things fall apart. Normally it is not that bad, but this one was the worse yet.
Daniel had a very good day. He was calm and not into everything. As the night went on he got a little more rambunctious. However, for him it was a good day.
That is, until he decided to throw the little metal train. The train flew across the room, landing on Aaron’s head.
Now, Daniel throws a lot of things. I think it is a game to see what happens. The problem with things flying through the air is someone is bound to get hit. Aaron seems to be in the way of the flying toys more often than anyone else.
In a moment of shock and hurt he screamed at Super D. This is not unusual these days, Aaron is at that age where he yells. A lot. It was what he said, though, not how he said it. He screamed at Daniel, “I hate you” and ran off. A few minutes later he told me he hates Daniel.
I keep telling myself he does not really mean it. I have yet to convince myself that is really the case.
All the varying degrees of challenges take their toll. They erode relationships and add a lot of stress to this house. He takes so much time from the other boys, they lash out against everyone else.
What if they really grow up to hate Daniel?
It is unlikely Daniel will ever live a normal life on his own. While we still face an above average possibility of death by seizure, I would like to think he will outlive us. My hope has always been one of his brothers would care for him. It beaks my heart to think they could have such resentment for Daniel that he would not be welcome with them. Yet, it is a real possibility.
The thought of Daniel living in a home is not a new one. We have had people make comments to that effect before. For us, that is not an option. This is his home and this is where he belongs. My hope is the other boys will eventually feel the same way.
I imagine my grandfather struggled with many of the same thoughts. For almost ten years he cared for my bedridden grandmother after her stroke. When she passed away this spring he was 92, if I remember correctly. He fought long and hard to keep her at home at times. Why did he do that? It all boils down to love.
Will the other boys love Daniel enough to take care of him when we are gone? I wish I knew. Then again, maybe I do not want to know. Either way, he will be taken care of.
God will still be on His throne.
We love because he first loved us – 1 John 4:19
Life With Super D! 
Let me share a story with you – my first husband had a sister with severe cerebral palsy. She was confined to a wheel chair and her limbs had to be weighted down. Her mother’s day was pretty much consumed with her care – bathing, feeding, general care. Her two brothers did have a lot of resentment toward her for several reasons – time away from them and the toll it took on their mother – physically and emotionally, being the main sources. She did outlive both of her parents as well as my husband. The other brother had 3 children and just could not take on her care. They did find a terrific place for her where she received excellent care. They – as well as extended family (including me and my children) visited very often and made sure she was well cared for. When she lived at home, it was a very rare occasion that she ever got out of the house. The set-up of the new care home was such that she had much greater stimuli – they had vans that were equipped so they could take her out to see Christmas lights – to the park – to the beach. Her life was so much fuller. She lived for 9 more years in that home and I believe they were the best years of her life. I’m not saying – or even hinting – that this is the road you should take. Just know that, whatever this journey brings, guilt will be something you will struggle with. Guilt about your other children, about Daniel, about your marriage. So my prayer is that God will help you to overcome that and know that you are allowed to be ‘selfish’ sometimes. One of these times I will share my struggles with caring for my husband. . .but we’ll leave that for another day. Praying for God to guide you, comfort you and bring you joy this Christmas!!
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