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pdsprogress Welcome to our Child Web Page. It has been provided to keep people updated about our Child.
Journal
Friday, November 24, 2006 7:44 AM CST Greetings to all-An amazing two years has passed since my last entry-we have a lot of catching up to do!
Patrick is now 10 and seemingly healthy as a horse. He is very prone to getting colds and terrible coughs if exposed only slightly to the elements but otherwise quite "normal." His interests range from Yu-gi-oh cards to Taek-won-do as well as video games and playing chase. He is an excellent student as well. Not the most social child of the universe but he has a keen sense of responsibility for the different chores that are his and is wise beyond his years. During a recent father-son conversation that we had, I asked him at what age did he think he would get married-he said 25. I then pushed for a little more detail and I finally asked him if she had to be pretty-he said "no, she just has to be nice"- I think he may be onto something there!
Savannah is eight and absolutely diametrically opposed to Patrick in her personality-extremely outgoing, non-anal retentive, eats everything that is not nailed down, loves sports, irresponsible, extremely affectionate and lives for each moment. Savannah thinks about what is for lunch, Patrick thinks about the complexities of life. Patrick continually needs his down time to rest and contemplate, Savannah will go until she drops or needs something to eat. Savannah is a sports fiend, Patrick is a homebody. During Patrick's treatment, I hardly spent anytime with Savannah but her personality is very conducive to making up for lost time. I am a very affectionate person and our personalties match in that way-we are very touchy feely and make sure we express our love a lot and continually pick on one another. She is more fun than a barrel of monkeys.
Sierra is six and in the last year we have found out why she seems to be delayed in several areas. She is very small for her age (she is about half the size of Savannah) and is still progressing on her speech deficiencies. Additionally, Sierra is delayed in her ability to facilitate information and has many deficits in her cognitive skills. This is due to a condition that is call Velo-Cardial-Facial syndrome and is a genetic disorder that involves a slight deletion of part of one of the 46 chromosomes that is common to all of us (for example, those with Down's Syndrome have an extra 21st chromosome).
Her disorder comes with a long grocery list of potential side effects, many of which are life threatening, of which she has none. She has had surgery to correct her palate, her teeth did not form the normal enamel and almost all have developed cavities and/or rotted, she has an umbilical hernia, etc, etc.The most challenging part of her disorder, that is not common to all with this syndrome, is that she is extremely deficient in what is called "executive skills"- she can be very proficient at any one task, but does not grasp the linkage between each and every task in life, cause and effect, etc. She has a very, very high probability of needing assisted living once she becomes an adult. We are being very aggressive in seeking the appropriate therapy that might help her to retain the way that her brain is routed so that she may progress normally, but we will see-the odds are very much against her.
Seemingly along with these challenges comes an extremely simple outlook on life from Sierra, a profound innocence that I find disarming. She is so trusting, so affectionate, so undemanding in her expectations of life. An example of her naiveness was displayed about a week ago when I took her to the school bus stop-we had barely made it in time and the traffic was quite heavy that had been stopped both ways. She was about to get on the bus when it occurred to her that she did not get a final kiss from me. She stopped on a dime, traffic be darned and ran back to me "I need to get my kiss." She is the ultimate snuggle bug and her and I continually make up for the lost time that I just could not spend with her when Patrick was going thru treatment-she is such an inspiration to me and melts my heart like butter.
My wife, Denise, has resumed her career as an operating room technician, the best at what she does. Her abuse at the hands of her pastor when she was a child has come to the surface recently. I put on a public persona of happiness and contentment but the effect of that sexual abuse had a devastating effect on our household and we are in the process of rebuilding and we hope together to continue to deal with all the corresponding issues that this kind of crime affects one's life with and hope to get better day by day.
As I look into the rear view mirror of life, PeeDee's diagnosis has proved to be much more of a blessing than a curse. It has taught me that family is not defined by blood but by caring and I am eternally grateful for all the those that stepped forward when we were at our lowest- the Booby and Linda's, the Peaches and Bill's, The Joann's, Kelly's and the Julie's, The Dreams Come True, the Doris's, the Gene's and the Pete's, the Cindy's and the Beverly's- so many people from different walks of life, the basic commonality is that they felt our pain, my son's suffering, and reached out and gave of themselves when we could not provide for ourselves- truly they are my sisters and brothers, our uncles and aunts, our fathers and mothers- not necessarily the ones that are legally my family.
His diagnosis also taught me that life is very, very much a gift, not a right and that your pride in your children should be in their heart and their virtues, not their scholastic or athletic achievements. It has taught me that I am one heartbeat away from the poverty of the homeless, the ravaging effect of ill health. It has taught me the integrity of a child.
His diagnosis has taught me to express sincerity and love, to be unswervingly committed to the truth, to be thankful for everyday. I can truly say that it has taught me lessons the best of the Ivy league schools could never duplicate.
So is leukemia a blessing? I say nay, only the lessons that I learned from it are. The treatment that is involved in dealing with this disease is withering, humiliating and penetrates to the soul and this is if you "win"- if the child does not die. I have only glimpses of what life would be like if the disease wins, and it is not pretty.
I thank each and everyone for stopping by and I hope to continue to bring more good news as it relates to PeeDee's progress-he has roughly almost six more years before his risk of disease becomes that of an average child, so we continue to sleep with one eye open. Blessings to all,
PeeDee's Dad
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