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Learning With Leah..

My name is Salomie Crawford I am now 33 years old

12 years ago, I gave birth to a little girl she was my first baby and we named her Leah Madison Crawford.

I was only 20 when I fell pregnant looking down at that strip which showed positive for pregnancy I knew my life was about to change in the biggest way, something in me just told me so. I went through my pregnancy not knowing what to expect and just took each day as it came, as my belly grew so did my nose, feet and everything else I remember thinking “they said pregnancy is when your glowing” hah yeah right. 6 months into my pregnancy we learned that I was hypertensive and was placed on strict bed rest. My gynaecologist wasn’t taking any chances, he gave me a “kick count chart” I had to make sure I felt at least the minimum of 8-10 kicks for the day and anything less I needed to go straight to a hospital and have them call him. I had become a High-risk pregnancy both myself and my baby, Leah was active in my belly always showing me she was alright in there so we never had cause to worry much, at 38 weeks I was in the gynaecologist rooms waiting to see him for my last check up, I lay on the bed and he strapped the heart monitors onto my belly within 2min there where alert signs, he checked to see if I was dilated and I was not but my baby was going into distress, my husband and I where going to have our baby that night. 20:00 I was in the O.R undergoing a c-section, scared and excited all at the same time and as they birth my baby I remember a nurse singing a beautiful church song, I heard my baby cry so too did I. This must be the “Glow” I thought, they handed her to me all puffy and beautiful I kissed her and said “hello Leah we have been waiting for you” the nurses then took her from me to clean her up and take her to the nursery. I got out of the O.R at about 21:30 and they brought Leah to me for her first feed at 3am, I looked at her and asked myself “who does she look like, in my gut or intuition I knew already but was in denial I guess, I mean come on my blood work never picked up anything nor did the scans, my gynaecologist didn’t pick it up nor did the ultra sonographer in fact my bloods said that I had a 1 in 1800 chance of having a baby with Down Syndrome but I just happened to be that 1. I tried to breast feed her but failed, She just could not latch because her mouth was too small and tongue too long, so we started her on the bottle that night. The next morning the sun was shining brightly and me, well I was a mom now proud as ever! they wheeled my baby back into my room I stared at her wondering again who does she look like? This little Chinese porcelain doll with the most petite fetchers pulling tongues at me, a few moments later the paediatrician walked into my private room closed the door and said “Mrs. Crawford I am sorry to tell you this but your baby has what is medically known as Down Syndrome” I froze! he babbled on pointing out to me the tell-tale signs a doctor would look for to diagnose Down Syndrome (protruding tongue, low lying ears, poor muscle tone, flaps of skin near the eyes making them appear round, flat feet) I just shook my head in agreement with whatever he had said but I never heard anything all I could hear was my own voice screaming in my head, why? what did I do wrong? (oh my ignorance back then) we left the hospital after 2 days, my mother and mother in-law were both great at helping, we met with a geneticist who ran tests such as blood work to determine the type of down syndrome Leah has, then there was the Cardio testing with a cardiologist to check if Leah may have had a hole in her heart “99% of the time kids born with Down syndrome have a mermer or a hole in the heart that has to be repaired “ when all tests where done and results were back we learned that Leah was type Trisomy 21 this meant that at the time of conception on the 21 chromosome another was added which made up her genetics as Down Syndrome, it’s something spontaneous not genetic and we were told our babies after Leah would be completely fine, her cardio test showed no signs of any heart problems. The geneticist then explained that every bit of Leah’s growth would depend on us as parents, therapy, working on her muscle tone, touch, feel, sounds and taste to awaken her senses all dependant on us and the effort we put into her growth to reach the highest potential she had (just like any other kid) only we were not sure how high her potential was, it can range anywhere between severe to moderate to mild, we were told in some cases kids with Trisomy 21 are able to main stream but that it was a matter of therapy then wait and see, we were advised to have another baby as this would help Leah feed off of the milestones her sibling would hit , encouragement if you will. I went through many stages of grieving as a mother, I say grieve because I expected a different outcome, I did not want to have another baby probably out of fear, but I told myself it was because I just needed to put all my energy into helping Leah. I then educated myself on Down Syndrome what is was and how to help my child, I went to see the ladies at the Down Syndrome association and joined the support group and as Leah grew with every milestone she hit and achieved however slow it happened I would want to scream it at the top of my lungs in excitement, she has given us a deeper outlook on life and simple things like being able to speak is a luxury we all have, My daughter is now 11 turning 12 and her vocabulary is very limited, we have learnt to understand her by her body language and the way she gestures, she often displays a lot of frustration because she cannot verbally communicate, can you imagine not being able to talk, nor write down words to express yourself? I would imagine it feels like being trapped with your own thoughts all the time, Leah lost her gran 8 months ago in a car accident ,Leah was in the car, she knows that her best friend “her gran” is gone but she cannot communicate with me verbally on how she feels and there is no therapy for dealing with that trauma just love and support from her parents and family,BUT she’s a fighter, feisty young girl, loving with the most contagious laugh, she loves music and taking photographs is her favourite thing to do, she’s actually really good at it and seems to have a great artistic eye. Leah is also one hell of a dancer and at the drop of a hat with shake and shimmy to any and every beat, not shy at all. I am blessed to have had Leah in fact there is not a day that goes by where I don’t thank God for choosing me to care for one of his angels. To mothers and expecting mothers out there who have kids with Down Syndrome or have just found out that your child will be born with Down Syndrome please know that there is support for you and your kid, know that you are not alone, know that your child is a blessing no matter how long or hard the road ahead may seem choose to open your heart, do not be afraid, choose to give life and be loved abundantly in return.

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