Sunday, October 12, 2008

"We cannot direct the wind but we can adjust the sails" -author unknown

Get It Down; 31 for 21 The events of the last week have left me slightly frazzled and completely off kilter. At the very least, I certainly have dropped the ball with my blogging daily for awareness for Down syndrome. I had grandiose plans of posting pertinent facts, engrossing news articles, relevant stories and priceless videos but in the end, I suppose this, Zoey's life, fits the bill, in and of itself. In fairness though, Zoey's story is not typical. Most Down syndrome children do not come in to this world hit quite as hard. Some do. Most do not. Between 40-50% of children born with Down syndrome will be born with some type of heart defect. Within that group there is a wide range of severity. Some defects, like small ASD's and VSD's will resolve themselves and other defects, larger ASD's and VSD's, tetralogy of fallot and AV Canal, such as Zoey's, require surgery. Blood issues such as Zoey had, TMD, is only found in about 10% of children born with Down syndrome. As I stated in my earlier post, there is the increased risk of Leukemia in children born with Down syndrome but I must also add that children with Down syndrome are, from a medical stand point, treated differently and respond much better than a typical child diagnosed with same illness. It is a double edge sword really. Their genetic makeup leaves them pre-disposed to the disease but that same genetic makeup lends itself to a better remission rate and cure. That is why researchers are working diligently to find the link within the Down syndrome population so they might find a cure across the board for all children and people facing a Leukemia diagnosis. As for Zoey's stroke. About 4,ooo children per year suffer in utero strokes. A statistic outside the Down syndrome population. We will never know for certain the cause of Zoey's stroke but it is assumed that the combination of her heart defect and major blood disorder, coupled by the fact she was lying transverse inside me, were all contributing factors. When Zoey was born the entire right side of her neck was swollen .... like huge. Like scary huge. When they performed scans of her head and neck, they found the clot still in her carotid artery. It remains there to this day. We have been told that it poses no risk to her and the clot has just become one with the surrounding arteries and vessels. As for seizures. Seizures are present in about 5- 10% of the Down syndrome population as well. The cause, unknown. In Zoey's case she did develop the rare form of Infantile Spasms but we now know that most likely her seizures are not exclusively related to having Down syndrome but rather also the brain damage that occurred due to her stroke. All of Zoey's issues do circle back to the fact she has Down syndrome. If she didn't have Down syndrome she would not have had her blood disorder or her type of heart defect and then she would not have had a stroke and then ...well you get the idea. It all trickled from the same root cause. One thing we are often asked is do we know how "high functioning" she will be. The answer .... no. Nor did we know with our other children. They all came to us uniquely created by God and their lives and what is to become of it, their story, continues to unravel and waits to be told. Zoey is no different in that respect. In fact, we were more prepared with Zoey in some ways, then the other children. There are very definite, indisputable things we know about Down syndrome. We are fore armed on many levels, for things we may or may not face, more so then the other five. The day my other five children came blazing into my life, I gazed upon their precious newborn faces and it too was all a great mystery. As parents, we have no way of knowing, on that first day of their life, if things such as behavior issues, autism, various learning disabilities, potential diseases, drug and alcohol abuse or mental illness are going to be part of their journey. We all could not imagine on that first day, going to such dark places for their future. So why should I with Zoey? Yes, there are some knowns. For instance, the range of IQ for people with Down syndrome is some where between 20 and 85. With the average being 42. The overall learning ability is that of a 6 or 8 year old non Down syndrome child. Unfortunately the emphasis of the learning disabilities by society often over shadows the ABILITIES and TALENTS of people with Down syndrome. In Zoey's case, we must take into account a major heart defect, that left her oxygen fluctuating within her very tired body for 5 1/2 months. A major stroke that occluded appropriate blood flow to her brain and least we forget, Infantile Spasms. That complete picture, puts Zoey in a whole different category. But in the end who truly knows the path these children will forge. No one. Well, maybe One person. But us, their parents, all we know is that we love our children. Regardless. We face what ever comes our way, their way and we hit it head on. We pledge to them unconditional love and the promise to not abandon them. To encourage them to be the best they can be. To let them know the world is theirs for the taking as long as they go after it with patience, kindness, gratitude and love for their fellow man and God. At least that's my take on it. As much as Zoey's future seems so uncertain in many respects, I, believe it or not, feel more prepared then I do with the others. Beside which, I have my buddy for life. I have great hopes and dreams for her and I. I look forward to the amazing things that I know await us. Her gentle spirit and innocent wide eyed wonder is refreshing and most certainly inspiring, to us, her family. Here's one last fact I want to leave you with. Approximately 75% of babies with Trisomy 21 die in the embryonic and fetal stage. Zoey beat those odds too, didn't she? This child of mine continues to defy odds and show all of us, just how resilient she is. This week proved to be yet another bump in the road. The tide turns, ebbs and flows. The wind blows and we go with it. Zoey often dictating it's direction. She seems, to me, to be finding her way through the latest. She took another power nap yesterday, 4 hours. And again today, 3 hours. Tuesday we do another blood draw. Praying for a upward swing in her counts. I have to believe that this will be the case. I do worry about my littlest princess. What I wouldn't do to wish away her difficult days but alas I cannot. Instead, I hold her and love her and put aside therapy for the moment and guessing for the moment and surmising about the future, just for the moment and just be, my little buddy and I.


Reagan Leigh said...

Great post. You more than made up for your missed days. I wanted to tell you...I finally had a moment and went to Reece's Rainbow. Wow, I feel like I have been forever changed. What awesome work they are doing!! Awesome.

Anonymous said...

Heather - Hope you have a better week! Love to everyone


Sophie's Story by Elaine said...

Heather...I know the words that I am about to write will not truly sum up how I feel but I'll try. You are such an inspiration to me. Your words of wisdom always brings me back to "the moment". To live now. To not think about all the what ifs. To enjoy what is currently in front of me. To put more faith in Him. I can never thank you enough for sharing your story.

Jackson's Blog said...

You have a way with words! Your post was informative and so touching! It is true, we never have a way of knowing the future, but no one ever does. That is a great reminder! We have to keep the faith, hope and love for our children...the rest is unwritten. Keeping Zoey in our prayers for an increased blood count and a better week. ;-)

Kele said...

Glad your back, altho I understand, all to well, the need to take a break sometimes...but I
miss you and your wisdom in those times!
Love ya and give Miss Z~ a kiss from me!