We sometimes live in a comfortable, isolated from the world bubble, that allows us to put out unpleasant realities away from us. In 2004, I was devasted to learn that my beautiful blonde haired, blue eyed boy Tommy, had a condition called Angelman Syndrome. It was a shock to my soul, and yet, it wasn't the hardest test I would have to face and still do. Death lurked around the corner. I cannot hug my son right now. All I can do is think about him, or sit by his gravestone, and wonder what could have been. What should have been. Even though I do hope to live a long life, whatever it says on my death certificate, it will be from a broken heart.
Today parents are finding out that their little girl or boy has Angelman Syndrome. They are no doubt, crushed, as every dream they had has been thrown out the window. Their child, at least for now, will probably never say a word to them. They won't play baseball or get that report card for Mathematics. Instead, just learning how to walk and maybe go to the bathroom, or somehow getting some rest will be in order. Angelman Syndrome is a rare condition, at around one in every 10-15,000 births or so, caused by a partial deletion of chromosome 15. I am thankful that most parents never have to go through this, and although I love angels with all of my heart, I do hope that a cure will happen. There are just so many dangers with a child who cannot verbalise what they are feeling, and their adventurous spirits can cause them numerous hazards.
This past week the clouds have been heavy. In fact, this past month, as the Angelman Community across the world, has learned of two young children with this condition going to God far too early.I would not wish upon my worst enemy, if I had one, the diagnosis of this condition or the loss of a child. It is a pain that is always with you, and those who are going through this agony right now, I cannot promise an easy road. In fact, its going to make you question everything in life. The best way to describe it is a knife to your heart, and flipping everything you believed to be true, upside down and spit out in a multitude of painful chunks. These families are going to be facing anger, depression, guilt, and tears that will fill buckets.
Yet we must not give up. To parents of angels, whether you've been hugged by one for awhile now, or are just finding out, there are new developments. I pray these work, as there are two different approaches being tried that I am aware of. There might be more, whether in process, or down the pipeline. Yet even with science moving as fast as it is, seizures, accidents, and other health related conditions associated with AS are going to kill children. That is why it is so important, so necessary, to appreciate every moment with them. Take yourself out of the box for a moment, and imagine your life without them, forever. Reflect on what it would mean to bury your little one, getting their clothes in their coffin, and saying goodbye to them as they are lowered down.
I miss Tommy everyday. Sometimes I brood over how it took me so long, to accept that he had this condition, and there's nothing that I can do about it now. I wish I could have hugged him one more time, stroked his hair more, and just spent time with him in the pool and other places even more. My own anger at his diagnosis caused me, to miss so many valuable moments that should have been cherished. I'm proud of how hard he fought, yet I am bothered by the fact that he died in his bed alone. No more of our children should have to go through this, and no more parents and families should be crushed, by the despair of seizures and other conditions that are related to Angelman Syndrome.
We must be unified in prayer for a cure, but at the same time, enjoy every moment with angels who reside with us. Mine now resides in my heart, but each angel should get more hugs, more love, and acceptance in everything. I am so thankful to my wife, Tommy's grandparents, Uncles, and all who were a part of his life. Often I think about him at school, and while sometimes seeing a bus causes a moment of heartache, it usually produces a smile. I think of him on that bus bouncing around, smiling, knowing that he was going to a place that most of us would fight to stay away from. May his education in Heaven be fun, with lots of water and the love of God, because Earth is a seriously confusing place. Hug your angel, and hug him or her with even more love, because you never know when. You just know now.
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