http://www.washingtonpost.com/local/a-fathers-fury-at-the-syndrome-that-killed-his-5-year-old/2012/08/20/c1221138-eaf5-11e1-a80b-9f898562d010_story.html
It was an honor and privilege, for our family to meet with Petula Dvorak of the Washington Post newspaper. She is a woman of fine character, who writes from the heart, and we all greatly appreciate not only her kindness, but also her willingness to go the extra mile with her piece on our boy Tommy today. The past few years have been difficult, as our family misses Tommy so much, and we all so want a cure for angelman syndrome.(Partial deletion of Chromosome 15). There has been anger, depression, denial, bargaining, and acceptance as so eloquently described by Dr. Elizabeth Kubler-Ross.(No relation) These have not been in any particular order, but they have all shown up at various points, as families that have had to go down this road, know that they can also come all at one time or out of the blue.
We still cry over Tommy's passing at age five. Is it unfair? Yes. Sometimes it feels like a knife to the heart, pain upon pain that can leave you questioning everything that you could have ever imagined and then some. Yet, I know Tommy is most certainly in Heaven, dancing with the angels, and that alone provides some comfort. We will never get over his passing. Not until our own deaths, and while we hope to all live long, productive lives, we do not take any day for granted anymore. Each day is a blessing, and even in the midst of this challenge, we have learned a lot about life, death, each other, and what we value.
Our family is thankful for "angels" like Mrs. Dvorak, and our family members who come from different countries, and might have different names. Yet they are family indeed, and we wish all nothing but love, and will always be there for anyone in need. We obviously are not perfect, and I am grateful to everyone. The list is long, but it includes people from all walks of life, whether it be the Angelman Syndrome Foundation and FAST, two groups that are working for a cure, and Vanderbilt University Kennedy Center that is working on seizure angles. The NIH and other institutions are in our prayers, as are all people with Angelman Syndrome, their parents and families, and anyone who's been given a challenge that seems insurmountable, and yet through faith and the strength of the human spirit that all of us have, carry on and move mountains seen and not so visible to the naked eye.
As posted, there is no getting over the loss of a child, only "through." Its by no means an easy process, but millions of people across the globe, through periods of history and right now, are going through this. Our hearts are heavy for them, as its a long road, a journey that a gentleman named Darren in New Zealand who had his beautiful Elijah go to Heaven as well, so aptly describes it as. Its 2012 and we are closing in on the third anniversary of Tommy's departure on Earth, and these dates bring back a flood gate of emotions. Yet we are proud of our boy, as he defied so many odds, and walked unassisted strongly that last week, with a determination that none of us will probably ever have. His golden heart, all of his teachers and so many people were on Team Tommy, we are forever grateful.
Petula's piece has brought additional healing, and we are very appreciative. There have been tears today, and that's more than okay. Yet there have also been smiles, and if one family is touched, or at least finds some comfort, then by God's grace, we are even more thankful that someone says "I am in pain, yet if this is what I have to face, then I am going to get through this and emerge with a new view on life." Life is such a valuable thing, and each day must be appreciated, and it is a learning experience. Tommy has his wings. He will always be a part of our family, as will so many people from around the world, who have also touched our hearts, and reminded us of the value of one step at a time.Love one another.
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