Monday was a full day. From the moment that I woke up I felt anxious and irritable. This may have been, at least in part, the reason that Ella just would not feed, despite the fact that she hadn’t eaten since 9:30pm the night before. I rushed through breakfast and tried to quickly compose myself into a “confident, put together, emotionally stable mother”. Poor Jakob, probably didn’t know what hit him – why were we leaving the house so early and why was mommy so grumpy? Ben’s parents arrived at just before 8am to load up Jakob in their car and by 8:15 we were all on the road.

My heart of was full of uncertainty and yet there was a peace that we had not known a week ago. This was a reality and now down to business.

Our first appointment was with the Geneticist that we had originally met with. Ben’s parents joined us in the exam room while the doctor explained the science of Down Syndrome. Ella’s condition was not because of genetic history or anything that happened in utero but rather egg or sperm had originally had 2 copies of chromosome 21…in other words pure…luck? A one in 1034 chance to be exact (for a woman my age). The meeting was shorter than expected but I think it covered what we wanted to know.

From there we went straight to the cardiology department just down the hall. Aside from the looming possibility of a major heart defect, requiring surgery, it was an ultrasound like any other – fuzzy, distorted pictures of my little girl’s heart. It was beating… that’s mostly what concerned me. Next was and electrocardiogram for which they stuck about 15 stickers on Ellas torso, all attached to little wires. This would allow them to listen to her heart from all angles. It looked like something out of a science fiction movie.

At last the Cardiologist came in to discuss the findings. He awkwardly discussed the pictures with the technician in medical mumbo jumbo while we patiently…or not so patiently waited. He finally explained to us that there was nothing to worry about. The hole in the heart which allows blood to bypass the lungs in utero normally closes up after birth however Ella’s had not. This was quite common and would close up eventually – he seemed quite unconcerned and would leave it up to our family doctor as to whether it should be followed up on. Good news.

Our entourage took a break for lunch and then it was on to a meeting with the Down Syndrome Clinic. By this time our minds and spirits were quite fatigued and Jakob was more than ready for a nap.  We thank God for a supportive family and while we prepared ourselves to take in another large dose of information overload, Ben’s aunt took Jakob to the park. The nurse led us to the family center where we crammed into a small consultation room. She informed us of all the resources available. This would include a medical team made up of physiotherapists, occupational therapists, speech therapists, psychologists, nurses and doctors. She let us know about the Calgary based Down Syndrome society called “Ups and Downs” and of course the Canadian Down Syndrome society all of which provide, information, resources and support to those with Down Syndrome and their families.

And although this session was very informative I came out of it feeling that it was a little too post-modern for me. For example when asked about what type of stimulation we should be giving Ella the response was along the lines of “well it depends on the child, some children like to be held and some just get overwhelmed…” I’m a list person…JUST GIVE ME A LIST!

But perhaps this is just one more lesson that Ella will bring to my life. Down Syndrome is so diverse and each child reveals their abilities and disabilities in their own time. We will be forced to face Ella’s condition, as well as discover her gifts and talents on a daily basis. And there are many things we will not be able to know until the time comes. There is no plan, no map, no timeline or list and for those who know me, know that this is NOT how I work.

Ella is an amazing blessing and I am excited to see who she becomes, the potential that she can achieve and the impact that she will have on those around her. Here are some things that I know.

-          I know that she will look different than other children…and I know she will be beautiful.

-          I know that she will be intellectually challenged…and I know that she will have her own set of gifts and talents

-          I know that some days I will look at her and see Down Syndrome…and I know that some days I will look at her and see me.

-          I know that sometimes I will be embarrassed at her lack of inhibition…and I know that this will bless many people.

-          I know that this is going to be a challenging journey…and I know that God will carry us both through when we lose the strength to walk.

-          I know that she is my child and that I love her…and I know that she is God’s child and he loves her more than I ever could.

 

“Cast your cares on the Lord and he will sustain you.” Psalm 55:22