Friday, November 18, 2005

What is Down syndrome?

What is Down syndrome? [clink on this link to learn the truth about Down syndrome]

I asked this question, in response to the article written below, to a truly diverse and inspirational group of parents who are blessed by the magic of T21 in their lives.

Here are some of the responses,,,,and I will add to the responses as they come in.

Kei, Mother to William:

I loved reading Coach Stallings book several years ago. And I love this recent quote from the site you posted: "I remember watching Coach Stallings on a television news magazine a few years ago. The reporter asked him if he felt sad, or even cheated, because after having coached so many healthy boys, that God had given him a son with Down syndrome. I've never forgotten what I heard next. Coach Stallings smiled and said in that deep, resonating voice: "How many fathers hear their sons tell them, "I love you, Dad," every single day? "Not nearly enough, coach. Not nearly enough"
How truly sad it is that so many choose not to have a child w/T21. I guess they'll never miss what they chose to never get to know, but I for one cannot imagine my life without William. And it is a life that has been completely blessed because he has Trisomy 21, not in spite of it. I finally have felt in the nearly 6 years (since I got pg w/William) that I am on the path I am meant to be on. He has brought so much to my life that I would not have if he did not have that extra chromosome. The funny thing is, I remember thinking when Robert & I found out he might have T21 (no amnio, just a bunch of ultrasounds) that maybe we could enrich his life with our love and perseverence~ and that has been but one miniscule drop compared to how much he has enriched and educated us, and how much he has persevered. I feel so humbled by him, his love and his character. And blessed... completely, truly blessed.

Stephanie, Mother to Katie:

Down syndrome, means, plain and simple, that Life is Beautiful. It means that I have more patience then I ever knew I had. It means that my two sons have a sensitivity that I might have never been aware of. It means that my husband and I really know how much we love each other. It means that what I always thought the word 'smart' meant, was wrong. It means that my life has a richness that I could not ever possibly imagine. It means that I feel sorry for anybody who doesn't have anybody with down syndrome in their lives. It means that I regret that I never had anyone with down syndrome in my life prior to the last 7 years.....thus missing out on 36 years of beauty. It means that I challenge all of the people who are "scared" of down syndrome to walk a mile in my shoes and not to feel the beauty of having a child like Katie.

AS to the "why" people act like they do...I guess it's like a lot of order to understand, you really need to be in it (having someone in your life with ds). But, once you are "in it" "get it"!

Francine, Mother to Sofia:

I can see the same conversation written with so many different variations: "Oh my, the kid next door:- has Down Syndrome- speaks a different language than me- has a different color skin than me- practices a different religion than me.What should I do? Woe is me. This is so terrible...."People, especially (but not limited to) narrow-minded, self-centered, ignorant, frightened people, are terrified by people who are not exactly like themselves.How to counter it (in all the above cases) is simple - exposure and education.That means being visible and vocal, without being defensive. Assume that people are simply uninformed, and provide them with accurate information, either directly ("this is what this means") or indirectly (for example, "this is what/how a person with .... does/says/acts in this situation"). This makes the "otherness" less strange, less frightening, less threatenting. The ignorance may be based on old assumptions, false information, baseless hatred, or any number of things. But a little knowledge goes a long long way to countering it.When I first got my amnio results, I found that the poeple with the "worst" reactions were mostly from a previous generation, when people with Down Syndrome were automatically institutionalized, marginalized and ignored. No one (regardless of their chromosome count) can thrive in that sort of environment. So the result was that they seemed very "other". Now, however, we are so lucky to have come so very far in how we help our children thrive. So those same people who were so upset about our amnio results have become Sofia's strongest supporters.(I was on a roll, and now my train of thought has derailed....)

Nicki, Mother to Andrew:

My husband had accompanied me to one of my monthly prenatal appointments. It happened to be the one where my Dr was going to tell me that my triple screen results had come back normal, as he had 3 times before. The Dr. walked in the exam room, shut the door and simply stated, "The triple screen results came back as borderline positive for Down Syndrome." No "Hello" or "Nice to see you again" or "how are you today" as he usually did. Just straight to the point. My Dr. knows me well enough to know that I don't want things danced around or sugar-coated.My response was "Oh, Ok." That was it. It was like someone told me that it was Tuesday when I thought it was Wednesday.....Oh, Ok. I figured, I can't change it- why dwell on it? Another ultrasound was scheduled to check further for signs of Down Syndrome. I was ecstatic at the idea of seeing my little baby boy again in a few weeks! My husband and I went home from the Dr.'s office that day and hit the computer, searching th internet for any and all information we could find regarding Down Syndrome. We spent countless hours over the next few weeks researching, talking, wondering. Never once did we feel lik the impending diagnosis was a burden, we were never sad about it, we weren't even really scared with the prospect of all the medical issues related to having a single extra chromosome. This was our baby, our wonderful child and nothing, especially one little extra chromosome, was going to make us love him any less.The follow up ultrasound showed "no obvious abnormalities" as was written by the technician. The idea of our baby having Down Syndrome was sort-of put on the back burner. It never left my mind, it just wasn't in the foreground anymore.On February 1, 2005 at 1:37am, after only 3.5 short, painful hours of labor, the light of my life and joy of my world was born. As soon as he was handed to me, and looked up at me with those big, beautiful almond shaped eyes, I knew. He did indeed have Down Syndrome. I felt nothing but overwhelming love for him. He was absolutely beautiful!The next day my Dr sat down with me to discuss all the ins and outs of Down Syndrome, all the nitty-gritty, from the developmental delays to the impending medical issues. I asked questions, he answered them. Then he told me that he was proud of the way I have been handling this situation. I replied, "Well, how else am I suppose to handle it? He's my baby and I love him for who he is. So he has an extra chromosome, there isn't anything I can do about it and I really don't think I would want to even if I could."Fast forward to present time. That squirmy little baby boy is now almost 10 months old. He has captured the hearts and souls of our entire family. He has brought more joy and astonishment into our family than I could've even hoped for. Yes, he's 'delayed' at some things. He didn't sit unsupported until almost 8.5 months, but in the general scheme of things, he's still within the "normal" age range for that milestone. We are lucky in the fact that he has no real substantial medical issues. He had RSV at 4 weeks old and required a 6 day hospital stay. So far that's all. No heart problems, no GI problems. Just a wonderful, beautiful, little baby boy who has countless adults wrapped around his pudgy little finger.I can't see the future to know what he'll be doing, and I really don't want to. My son has taught me to live in the here and now. To take joy in the little things in life. To not worry so much about something you have no control over, but to embrace it for all it's worth and go from there. I guess that's what Andrew having a single extra chromosome means to me- don't sweat the small stuff, concentrate on the good and life will be joyful.

Monica, Mother to Mikey:

Honestly, to me Down syndrome was just part of the path that lead me to my son. I think the reason that I was so sure that I wanted to adopt a child with Down syndrome is simply because the son who was born in my heart would have Down syndrome and filling out the papers to say that I was looking for a child with Down syndrome helped in the process of us being "matched" in the bigger picture of adoption.

There have been several people in my life who have touched the very core of what I believe in that have Down syndrome. It was a little boy with Down syndrome who kept me believing there was good in the world as I spiraled into a severe depression many years before I would come to adopt Mikey. This little boy was the only one who could touch my soul in a time when I began to feel I didn't have one. It was a little girl with Down syndrome who taught me the joys of everyday living when I was thinking there had to be more to life than day to day happenings and began taking her swimming a couple of times a week and soon came to realize that there would be no greater moment in life then the first time she managed to float on her own. It was a group of adults with Down syndrome training for Special Olympics at the local pool who taught me the value of perservering to reach a goal that you had set for yourself. It was a friend's mother who has a son with Down syndrome who made me realize that one could smile with pride and contentment and new life no matter how hard their life had been when they looked at their now grown son who has Down syndrome.

To me... Down syndrome means everything and nothing. Mikey is Mikey and he came to me because of Down syndrome but not because him having Down syndrome defines his personality. I am me because it seems that there have been too many times in my life that I have been touched and changed by a person with Down syndrome for it to be just a mere coincidence. And yet it is their personality and who they are as individaul people who touched me as each has touched me in a different way. Down syndrome is somehow tied in to what I need to learn as I travel my path here on Earth and I don't know all the ins and outs of it but I just feel it really is.

Vicki, Mother to Travis:

I have been thinking a lot this week about how Travis has changed me. It may not be a major change, but a change none the less. Before I had Travis, I was someone who would look away. I hate to admit it, but I was. I might sneak a look, try not to stare. A woman I used to work with has a son w. T21 who is about 10 months older than Travis. Our older children have the same soccer coach, and while I was pregnant w. Travis, I saw her and her son for the first time out at the soccer field. (Her son's name is Travis too) I remember thinking I'm glad that's not me. (we did not know our Travis had T21 until he was born) I look back at that and I am ashamed. Now that I know my Travis, I'm glad that it is me. Now, when I see someone w. T21 I smile. I was at the grocery store this past Monday, and as I went down the isle, a man and his son were passing me. I looked at the son - he appeared to be a teen -- and I got the biggest smile on my face when I saw that he had T21. And he gave me the biggest smile back. I don't walk around with a smile on my face all the time, and don't usually smile at strangers. But it is automatic for me now to smile when I see someone with Down Syndrome. I can't explain it, but I feel that I'm a better person for it.

Dani, Mother to Alyse:

I can remember what it was like to get that Diagnosis, I felt that my world had been forever changed in a few short utterances from our Perinatologists nurse. "So sorry your baby has Down Syndrome, but you're having a girl if that helps" My thoughts, "a girl huh?, but what about that other thing you said, could you possibly be wrong? Are you absolutely sure? I must have misunderstood what you said, could you please repeat that?" I felt like my life was over, the life that I had all planned out in a neat little package, tightly wrapped in ribbons and bows. All would be different now, I had lost my ribbons and bows.You know what I was right, my life IS completely different. My ribbons and bows are more sparkly now, my package has grown to 2, 3, 4 times the size it was before. My life has blossomed in ways I never thought possible. I can not believe how incredibly blessed I am to have this impossibly perfect soul in my life. The thought of the many many ways this child has enhanced my life can bring me to my knees and make me cry those tears all over, but now those tears are tears of a heartfelt gratitude. I am truly one of the luckiest people. I know what it means to be empowered by unconditional love. I feel the light, it radiates from my little Alyse. She is my sunshine, my warmth on the coldest of winter days, she is mine. Thank you God for giving her to ME, I am so incredibly lucky.

Betsy, Mother to Paige:

This is the line that kills me........
"As for that baby that will never be, I will remember him always. But I'm quite certain that I made the right choice for the three of us." That pretty much says it all about the author. She totally deals in the "tidy" words and tucks it all neatly away in her memory as some unfortunate accident that happened to her.He wasn't "a baby that will never be"...he was ALREADY a baby, waiting to be born, one with a heartbeat, and fingers and toes and all the things a baby needs to be a baby when SHE chose to end his life. Honestly, at least call it like it is...SHE decided he should not live. And she's quite certain she made the right choice for the THREE of them?!?!?!? OMG!!!!! No...she's quite certain she made the right choice for her husband and herself perhaps. The baby had NO choice at all.We always see the statistic that 80-90% of women who find out their unborn child will have DS will abort...But...we also need to be aware that there is a 2-3 year WAITING list for people who want a child with DS in their lives...who will very willingly and lovingly, and consciously, welcome such a child into their family.Perhaps this big, important journalist could have spared 9 months of her life to give that gift to another family...and more importantly, to her son.What is Down Syndrome to me??It just is. Just like blonde hair or blue eyes or goofy ears or being tall or short is. Not good or bad...just Down Syndrome...nothing more or less than that.And choosing to give my child life has been such a blessing for me...Unlike this author, I don't have to spend my whole life wondering what Paige would have looked like, who's eyes she would have, what the sound of her voice and her giggle are; I don't have to think about the "would have beens"...she would have been 7 or 8 or 9...I get to know...I...get to know.

Peggy, Mother to Cason:

First, a little background. My husband Chris and I have been married for 9 years. He and I have been the best of friends since the very beginning. He is who I am supposed to travel this life with and we knew we wanted to have a family together, but I had been told at the age of 18 that it might be difficult for me to become pregnant. So with that said, as soon as we were married, we began trying to have a baby. We went through A LOT trying to get pregnant. Clomid, surgery, tests, 2 IUIs, injectable drugs, 3 IVFs, and finally (and our very last attempt via Artificial Reproductive Therapy) we got pregnant via a frozen embryo transfer with embryos from my last IVF. As you can imagine, we were absolutely thrilled! The pregnancy wasn't easy as I am diabetic. I was on insulin prior to getting pregnant and during the pregnancy, so I was closely monitored for the whole duration. I also had a subchorionic hemorrhage (a bleed around the amniotic sac) from 10 weeks until 15 weeks. Since it had taken so much for us to get pregnant and we would not change the outcome of our pregnancy if everything was not OK, we chose not to have any prenatal testing (triple screen or the now controversial 1st trimester testing that my peri has offered for quite some time to expecting mothers) other than some 20-odd ultrasounds (due to being high-risk). Everything always looked good and the only "iffy" thing was that Cason's nuchal transparency measurement was on the high-end of normal, but normal nontheless. We never worried about it and no one ever said anything about being concerned either.Fast forward to my 36th week. I developed pre-eclampsia and was admitted to the High-Risk Pregnancy Unit at the hospital that I was delivering at. I knew that we would be having Cason at 37 weeks after an amnio confirmed lung maturity due to his size and my diabetes (plus he was breech), but it looked as though he was coming a little sooner. On the Monday morning prior to his delivery, we did an amnio, determined lung maturity and scheduled the c-section for the next morning. Here is an excerpt from my birth story (keep in mind, this was written shortly after his birth and I wasn't aware of all of the "people first" stuff yet):**Monday evening, we were told that the amnio results had come back and the baby’s numbers were nice and high showing that his lungs were fine. I was so excited that I was finally going to meet my baby!! Surgery was scheduled for 8a.m. Tuesday morning and at 8:38a.m., Cason Alan Smith was born. I had asked that Chris be the one who told me whether we had a boy or a girl, and that smile behind his mask when he said, “It’s a boy” will be forever etched in my mind. They took Cason right over to the table to start cleaning him up and getting his stats. He couldn’t maintain his body temperature or keep good saturation of oxygen, so they decided they would take him over to the NICU for a closer look. I knew that this might be a possibility anyway due to my diabetes and him possibly having low blood sugars, which he also did have, so I tried not to worry. After I was sewn up, my OB went into the NICU to see how Cason was doing. He came back, walked over to Chris, leaned down, and told him something in his ear. When I asked Chris what he had said, he told me the words that I will never forget. Chris said, “Dr. Sumners said that Cason has some physical characteristics of Down Syndrome.” My heart broke into a million pieces at that moment in time. I just stared at the ceiling of that operating room thinking of all that was happening or could be happening with my baby. I knew that there are often heart problems with Down Syndrome children and I also knew how serious those problems could be. I didn’t know how I was going to care for potentially sick child. How was I going to tell my family? Why did God make me wait so long for a baby only to finally give me one that wasn’t the perfect child I had imagined and expected? So many things ran through my mind in those minutes after he was born. Once they got me back onto my bed and into recovery, the nurse told me that they would wheel me through the NICU on the way back to my room so I could see Cason. The first time I held my baby and looked into his eyes, I knew that everything was going to be OK and that I would do everything I could for him. It didn’t matter that he had Down Syndrome. What mattered was that we were going to make sure he was healthy and we were finally a family. In the days that followed, we found out that Cason’s heart was fine and he didn’t seem to have any digestive problems. He does have a small hole in his heart (a heart murmur) that will close between 4-6 months of age. As soon as he began eating, he took to it like a champ and liked his meals every 3 hours. He did develop jaundice, which coincidentally, is the only thing that kept him longer in the NICU. His levels had to be down below 12 before they would release him and little Cason worked hard to get them there so he could go home with his mommy and daddy. He was released on September 26th, one day after I was. We are thankful that Cason’s health is good and that he doesn’t seem to have any major complications right now. He is a wonderful baby and each day with him fills me with more and more happiness. He truly is a blessing and gift from God.Each day that passes seems to get easier for me, but I still cry and grieve for the child that I was expecting to have. I know that in time, Cason will erase that expectation and show me that he was who I was waiting for, I just didn’t know it.** Now this was written quite a while ago, but I'd like to think that I've grown even more from this experience and from what Cason has taught me as well. First and foremost, he is a baby. He needed me to care for him just like I would have had he not had Down syndrome. That was so hard to learn. I think that we're so lucky that Cason is our firstborn because really, we don't know anything different. We adore this little man and neither of us can imagine life without him! He is our world and each day is full of wonderment with him.So, I guess, what I would say in answer to your question is this...I'm not sure what Down syndrome is to each family it affects, but I do know what it's NOT...Down syndrome is not a death sentence. It's not horrible and it's not embarrassing. Down syndrome is Cason, and Emma Sage, and Brady, and Parker, and all of the other little souls blessed with an extra chromosone. I feel blessed to have been given Cason, as well as all of his extra "special-ness". He is part me and part Chris and above all, he is a miracle! Plain and simple, a miracle formed by the hands of God. I guess I would like to ask those who choose not to be parents to babies with Ds, who could ever dream of turning such a gift away?! They just don't know what they're missing! Peggy, proud mommy of Cason, 13 1/2 months old!


~Patricia~ said...

Thank you for visiting Pollywog Creek Porch! Emily Sage is absolutely beautiful! You might be interested to read my post today as I continued my discussion.
Love and blessings ~ Patricia

Kim Ayres said...

This whole debate breaks my heart. I am pro-choice on one level, because it has to be the choice of the indivdual as to whether they continue with their pregnancy. But in my heart I am completely pro-life and feel that it is murder every time someone aborts their child.

And in the case of aborting a child with DS, when I think of my daughter, Meg, I weep for the ignorance of people who think that by murdering their "retarded" (how I hate that word) child, that they are somehow purifying the human race.