The Alberta Children’s hospital was prompt in making an appointment for us to see the genetics specialist and on Wednesday June 17th, we had our first outing. The ride into the city was stressful to say the least. The unknown lingering beyond the surprisingly welcoming doors of the hospital was paralyzing. For a healthy child like Jakob, it was paradise but for the mother and newborn whose future was on the line, it was the last place I wanted to be.
The doctor welcomed us into an exam room and began to get a bit of our family medical history – no history of genetic disorders, no toxic exposure, overall, healthy parents with no apparent signs of disease. So in this case, it was random and a one in a thousand chance – it almost makes me want to play the lottery. The doctor, in her gentle way, said that usually, after physically examining a child she can say 90% yes or 90% no (that they have Down Syndrome). In our case, she could not commit either way. Ella had some key signs like folded over ears, a line straight across her palm and of course her eyes. She did however have better muscle tone than most babies with Down’s, she was quite alert and of course there was no history of genetic disorders in our family. As a result of her uncertainty she made a requisition for a chromosome count. Individuals with Down’s have one extra chromosome, so instead of 46, they have 47. We were able to get into the lab right away and they took some of little Ella’s blood…she didn’t even cry…but mommy did.
After what seemed like eternity, on June 23rd we received a call from the Genetics specialist confirming that Ella had the extra chromosome. As we met with the Geneticist, Cardiologist and many more healthcare professionals in the weeks that followed we came up with more questions than answers.
And while the sessions were 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. Many people have commented on how beautiful Ella is and if they didn’t know differently, would never have thought twice about her having Down Syndrome. And that is just it – Ella is after all, just a baby. She eats, sleeps and poops just like any other baby. And although I know that once she is done being a baby she will be just like any other toddler, and then like any other child, and any other teenager, I can’t help but wonder how my perception of her will change. 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 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 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