Tomorrow, Ella will go for a follow-up ECG (Echo-cardiogram) at Addenbrookes hospital and I would be lying if I didn’t say I was a little nervous. You see, when Ella was born, like all children with Down Syndrome, she had an ultrasound done of her heart. They do this as soon as a diagnosis is confirmed because 50% of children with Down Syndrome are born with heart problems. Ella was no exception, however, because she only had a small hole in the upper chambers, our cardiologist suggested that there was no further action that needed to be taken. More than likely, the hole would close up on it’s own within a few months without surgery. He left it up to our family doctor as to whether a follow-up ECG was required. Ella grew and developed very well and, with no indication of a heart murmur at one year old, our doctor did not feel it was necessary to follow through.
As I have mention though, the NHS is a well-oiled machine and have been slowly, but surely, covering all the bases of Ella’s health while she is in their care and they, in turn, insisted that a follow-up ECG be done.
Now, I have no reason to be concerned. My little girl is healthy, she is growing (she is basically a GIANT in the Down syndrome world) and as I say, our doctor could not hear a murmur…then again, he couldn’t really hear one when she was first born either. But there is this little bit of doubt in the back of my mind. What if? What if something came up? What if the hole hadn’t closed? What if she needed to have it surgically repaired? What if there was something different, something new?
Two Christmases ago I had a debilitating fear of death. I was afraid that God would take my baby girl too soon, like he had two other little girls that I knew of, that were about Ella’s age. I feared that Ella would get cancer, or have heart problems, get pneumonia or contract some other ailment that would claim her small weak body. As I read the stories of families who, just days before Christmas surrendered their angels to God, I wept uncontrollably. I put myself in their shoes and wondered how I would cope. I wondered how life could possibly go on without one of my children.
My fear grew and festered as I soon began to not only fear for my Ella but my Jakob as well. And wondered if God would strike with irony.
It got to the point where, even without basis for concern and two perfectly healthy children, I wondered how I could function normally living in this fear of something that hadn’t even happened. The answer was, I couldn’t.
I had to come to a point of surrender and acceptance. Acceptance that God is in control and while he might bring sickness or disease, he will use it for good. He had already used Ella to touch so many people and I had to trust her life was in his hands. I can’t keep her sheltered forever and to a degree I had to accept that it is inevitable that sometime, somewhere down the road, she will probably get sick.
But here is the part that you will rarely, if ever, hear us talk about, the part that lingers in the shadows and the elephant in every Down Syndrome room: most of us, as parents, will be holding our baby’s hand as they enter the embrace of God, instead of the other way around. Whereas most of us accept the reality that our children will help us die, as a parent of a child with Down Syndrome, we can only hope and pray that the life expectancy of these individuals continues to extend beyond 50 years and we will be able to watch them live well into their 60’s, 70’s, or 90’s from up above.
This is why, for us, as parents, each victory is so sweet. Why we see each day is a gift and why it is so important to give them all the resources, opportunities, support and love that they need to fulfill their big, God-given potentials.
Post-edit: We have since been to the Cardiology clinic and it was the FASTEST hospital experience EVER! Excellent news: Ella’s heart is in tip top condition. There is no murmur, both sides are functioning equally well and the cardiologist said that he thinks she looks amazing and does not need to be seen again. As far as we are concerned she should be treated as a normal little girl. Praise the Lord!
Leave A Reply