OTHERS

I CAN... do anything: A Down Syndrome Story

Down Syndrome

Lisa Carr

Face Luke

The moment I saw Luke I knew that he had a little something extra. I also knew that my husband Kevin, nor anyone else in the room, saw what I saw. On the ward I mingled with the other mums, and our family visited. Midwives came and went and still no one mentioned Down Syndrome (DS). I stayed silent trying to figure out “am I going mad?”. As soon as the lights went out I studied my gorgeous little guy. I took pictures and studied them. “Maybe he doesn’t”. I googled…studied…took pictures…studied…googled... I even watched other people’s reactions when they looked at him. I was certain he had an extra chromosome. But what did it mean? The information I was reading was so negative. I was petrified of what this meant for Luke, for Julia and for us all. But something told me it was all ok. Luke’s reassuring little face, I think.

The Down Syndrome Diagnosis

The next day my thoughts were verified when a young consultant came to do the usual check over. She couldn’t look me in the eye and she told me that her senior consultant would be coming to see me later “something about Luke’s face when he was delivered”. What on earth did she mean? The senior consultant arrived shortly after with an entourage of students and pulled the curtains around us. She examined Luke and asked me if I had heard of Down syndrome, and I guess the rest is history. I only wish they had waited to discuss this when my husband Kevin arrived. Instead, they left that to me! Poor Kevin arrived to visit shortly after and was met with my life changing news. When our family visited again there was a very different atmosphere to the delightful energy the previous day, as the blood tests had verified that in fact he had Trisomy 21 ( the most common type of the 3 types of DS). Luke was in a room of his own in neonates in an incubator with UV light to keep him warm and tubes and drips that looked way more serious than they were. We were treated with kid gloves and staff tip toed around us. It appeared that Luke had something awful. Our families were just as confused as we were and we look back now with utter disbelief.

Down Syndrome Never Scared Me

Luke was a beautiful baby boy with no life threatening illness unlike some of the poor babies around him and yet here our family was …upset…in shock… at seeing Luke with tubes! There really was no need for such a dramatically low theme to these first couple of days of Luke's life. At this point there was no critical medical worry. In those first few days we got the sympathetic looks from staff. We even had “sorry's” and one consultant’s dreadful analogy involving The Maldives and Cornwall: Luke being Cornwall which is “nice” but “not the Maldives”, the Maldives being a child without Down Syndrome. I mean really? I know for a fact that some staff felt that I was too happy! How could I be positive about my baby having Down Syndrome? The truth is, if you had told me the day before Luke was born that he had Down Syndrome I’d have been shocked. I didn’t understand DS, I didn’t know anyone closely that had DS, I didn’t know what it meant to have DS. DS scared the hell out of me when I was pregnant. How mad and terribly unenlightened I was! Interestingly though, I never had any screening tests and I wonder: was I afraid of what my actions would be had I been faced with something pre natally? BUT the very moment that I saw Luke DS meant everything and more to me and I suddenly understood all that I needed to...despite the negativity that surrounded me everywhere. I can’t really explain it in words but I just knew everything was ok and I accepted that Luke had Down Syndrome. It is what makes him Luke! But I was scared too. I never grieved for the child that I thought I would have. I hear a lot of parents do this and I completely understand it. It absolutely makes sense! I just never felt this way.

Luke wouldn’t be Luke if he didn’t have Down Syndrome

Luke wouldn’t be Luke if he didn’t have Down Syndrome and so he IS the wee boy that we were meant to have. I understand that some may think well of course she would feel this way... it's her son! but it really really is more than that. My whole perception of DS completely changed that instant and I have continued to learn through the fascinating and totally inspirational people that I have met since, who have DS. It’s weird the shift in my thought process and yet Down Syndrome has hung around me since I was born. My mum was 44 years old when she had me in 1976 so you can imagine the enormous pressure she was under to have an amniocentesis. Her and dad refused and were ready to accept me and I will always be grateful for that. Luke was taken away from me at 2 days old to have blood tests to confirm Down syndrome and he was never given back as he remained in neonates and finally transferred to York Hill. It transpired he had Hirschsprung’s disease (a bowel condition which required treatment and surgery) and a small ventricular septal defect (VSD) (a small hole between the two ventricle chambers of his heart), which eventually closed on its own. We finally brought Luke home almost 3 months after he was born. Hallelujah! The moment we brought him home he thrived and thrived and has not stopped achieving every single day proving the experts wrong continually. “He will struggle with…”, “he most probably won’t…”, “he will find x,y and z very difficult” seemed to be the prognosis for Luke. Yet he does, does and DOES. One consultant told us to be prepared for a harsh chat when we were invited to our first specialist team meeting. She told us that parents often left her room crying. “So come without the kids and bring a tissue as I don’t tell it through rose tinted glasses” she said. Of course Kevin and I swore to each other that if one tear duct even felt like filling we’d need to crack a joke. We left happy and joking as she had told us nothing we hadn’t googled already. Yet, sadly, it’s not a laughing matter being hit with all this negativity. Yes, we are lucky Luke has had no serious health complications as some children with Down Syndrome do (we are still researching why that 3rd chromosome brings with it these challenges) and he seems to be developing amazingly so the information doesn’t need to be so bleak.

Challenges come with every child

The statistics are so blurred. Not to mention if such a high % of babies discovered to have Down syndrome are aborted just for having it, how can we possibly grasp a clear understanding of this communities capabilities? Lets get something clear you cannot have Down syndrome a lot or a little bit. If you have this type of genetic makeup you have it - like having blonde hair; and guess what? That chromosome was created at exactly the time the egg was fertilized. Your little being was meant to be and nothing you did during pregnancy made it so. However that tiny wee extra chromosome for some reason brings some challenges that differ from one person to the next. What people often fail to understand is that health, personal and social development and physical ability differ from one person with Down syndrome to another just as they differ between you and I. Of course there are challenges raising a child with Down syndrome I won’t lie, we have a lot of appointments to keep, extra effort to help Luke get to where he needs to be and his Hirschsprung’s disease and VSD have kept us on our toes. BUT GUESS WHAT? Challenges come with every child. If you are lucky enough to have kids they are going to challenge you in a world full of ways. (Julia starts primary 1 in August and boy the preparation for this is bloody challenging)

We Accept Luke Just As He Is

However, most of our challenges do not lie directly with Luke but more with how society see’s him. It is so exhausting at times trying to remind people that Luke is just a little boy. He is not always happy, he loves balls and blocks and pretending to be a monster to chase Julia. Yes he takes the scenic route to things like crawling, walking, talking but he always gets there. And we don’t know how he will continue to develop as he gets older, yes he will probably require a bit of support but he will live a valid life and he will most certainly contribute to society with an abundance of positivity, enthusiasm and be an effective valuable human being. He will make me happy, sad, drive me to frustration and most probably worry the hell out of me…just as his sister will. So, I say to anyone who feels sorry for us or Luke...please do not be sorry. To the midwives and health professionals that did not say sorry but who told us how gorgeous Luke was, how alike his big sister he was and how cool his hair was…thank you. To the health professionals that put boundaries on Luke’s potential…please stop doing this to people who happen to have Down Syndrome. To the nurses, the physiotherapists, his teachers and consultants that see Luke’s potential and help him so much to achieve…thank you we love you. To our family and friends who just see Luke as Luke…thank you we love you. To all of you out there desperate for a child…don’t be afraid of Down syndrome and don’t let it stop you becoming a parent. I have wasted so much energy on this. To the lovely lady in the park who, with good intention, declared to me “they’re always such happy wee things”...Luke is most certainly NOT always happy. Read our blog. And finally to Julia Luke's big sis... THANK YOU for being our biggest teacher of inclusion. You just see Luke your little bro... no different to you, and goodness you are fierce hearted at reminding us not to mess with either of you. I wonder when as a human race we decided that a person with Down Syndrome was less valued than the rest. Julia will never ever get this. Luke continues to achieve every day. He is at mainstream preschool with his big sister and is just a wee boy doing what wee boys do. We are just a regular family living our lives in a lovely community and Luke is a popular wee dude. What worries us is that Luke’s opportunities when he grows up will not be as vibrant as Julia’s.

supporting young adults with Down syndrome

So we have set up FACE. We want to support young adults with Down syndrome get into further education, employment or training programs and 2018 is going to be the year that we start to do this with an exciting enterprise project. We will blog soon about this 😉 I CAN… Fulfill Achieve Create Employ! For now here is Luke’s blog, a light hearted approach to raising awareness of Down syndrome. We post cool images or videos of Luke, his sister, his family/friends, his life, with the caption “I CAN ...” Hopefully we can demonstrate the joy, the fun, the tears, the tantrums, the regularity and the sometimes irregularity of our very regular life. Luke has heard the word ‘can’t’ often in his life, he wants to show that in fact he CAN do anything! Thank you for reading. Keep following Luke at faceluke.com and share to help us show the world that a person who has a different genetic makeup deserves to live and live well. Lisa xxx

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