Sunday, June 12, 2011


Hi friends,

I have several sets of friends IRL who have undergone particular heartache over their children. Two I'm currently mindful of, one of which is a currently unfolding scenario.

The first set of friends had their beautiful baby boy born about a year and a half ago. He was born in a particular hurry because he'd stopped growing in the womb. He was born at 36 weeks, but was closer to 32 weeks in development and size. Our wee girl had just been into hospital to have her second cast put on the night before when we got the call from our friends to say that their son (who had been born about 5 days earlier) was not expected to make it through the day. We agonised over what we should do, and decided that despite our we girls new cast, and complication of a hernia that was causing her great pain when it popped out, we needed to be there for them. So, after having had a poor nights sleep with our girl in a new cast, we started our 7 and a half hour car journey at about 7pm that night, hoping beyond hopes that God would somehow work things out for our friends, who hadn't even had a chance to spend a full week with their boy. Toby is his name. Toby was incredibly sick, with his kidney failing to do their job. we learned about 3 hours out from our destination that the doctors in despiration tried something they normally wouldn't, and it worked! Essentially sodium bicarbonate was used to reduce the acidity of his blood. And it looked like he would make it! So, we arrived early that morning, and after sleeping like babies, we got to meet him (well, Sarah did, I was sick with a cold, and decided I shouldn't see him). He'd made it, and while they still didn't know quite what the cause of all his problems were, they felt he would stabalise. We celebrated with them and their extended families that had gathered that weekend, there was such a sense of relief!

We travelled home feeling such a sense of frailty of life. Thankful we had been able to be there. Toby struggled and strained for the next few months and ahd some good days, he got to visit the local park, and was transported by plan to starship hospital in Auckland where all the sickest kids go. While they were there they wanted genetic testing done, and the result was told them on new years eve. The condition is called Gracile syndrome. There have only been a handful of cases diagnosed worldwide ever. He slowly deteriorated for another month until he passed away in Febuary last year. He lived for three months. He learned to smile before he died. He was a real fighter, and terribly corageous. His parents have been through the valley of the shadow of death. His parents have been a symbol of courage for us. Toby is no longer in pain, but those he has left behind are.

The second scenario is that of a couple we know less well, but have some significant connection with, and they are 22 weeks pregnant. At their 20 week scan they were told that their child has a problem with his cerebellum, meaning that there will be significant problems. He could have problems ranging from physical or mental problems ranging from relatively high functioning and little problems, through to being highly disruptive, through to being in a vegitative state. So they are at the beginning of what will likely be a very long and hard journey!

And then there is little old us. Emby #3 miscarried (for want of a better description) last weekend. This has happened before, Emby #1 didn't work either, but this Embryo must have progressed further because Sarah was in a great deal of pain on the Sunday, and that night she passed what looked like a big blood clot, but must have been the placenta with sack attached. She hasn't been through labor, but she said that it felt like what labor must feel like. She spent most of the day and night until the embryo passed in a great deal of pain. We had already resigned ourselves to the fact that this embryo was not going to progress, but somehow going through a mini labor and passing something that was recognisable as an embryo makes it somewhat more disturbing and distressing.

Everyones experiences and struggles are very different, somehow we have a huge capacity to cope with what life throws at us. Somehow though we always feel like we are on the knife edge. Sometimes reflecting on other peoples stories of hardship and trial give us strength on our own journey.


1 comment:

Searching for Serenity said...

You are amazing friends for making the journey for Toby and his parents despite your own struggles with Abbigail's health. What a tragic loss. It is a constant reminder to be grateful for every little blessing.

I'm so sorry to hear that the passing of Emby #3 was painful for Sarah. The body can be so mean sometimes. I hope she is comfortable soon.