Here we are, at the end of another year. It's cliche to say, but very true- I can't believe it is the end of another year. And like many other years, this one seemed to fly by. I try to pause in my every day life and appreciate the little moments. We started keeping a daily diary for ourselves and the girls to make note of the small things that happen in our day to day lives. While this is a wonderful concept, there are many dates we did not fill in this year. It is difficult at the end of an exhausting day to pause and appreciate all that you have. And so, once in a while I try for a big pause and a big appreciation of all that we have.
Because what we have in this life is wonderful.
Who am I to be so lucky in this life?
This year started off with Gavin and I absorbing the news of a terrible diagnosis for Ailsa. How can it be that our healthy child has been saddled with kidney disease? What will happen? How bad will this get? Will Ailsa need a transplant?
We still don't know the answers to many of our questions. And our hearts still break when we give Ailsa her kidney medication every day. But still, we know we are lucky.
We are lucky because Ailsa is an amazing person who is part of our lives. She is a gift. And this gift does not come with a warranty. Which we, as parents, always want for our children. We want to know that our children will always be happy, fulfilled, successful, and of course, alive. But life makes no such guarantees. And so we can only appreciate this moment. And appreciate that we have been given such a wonderful gift.
Who am I to be so lucky to have two beautiful daughters?
A Trip of A Lifetime
It is always easier to feel grateful during happy times. In March this year, we got to go on a Make A Wish trip and it was amazing. Everything about the trip worked out well, including the fact that no one was sick. We all had such a great time, just enjoying life as a family. We still enjoy looking at the photos from that trip. I love seeing the smiles on the girls faces. And seeing how relaxed we all are.
Who am I to have such an amazing trip with my family?
This year Gavin and I had to make a difficult decision. Zoe has always grown well (for a 1p36 child) while eating orally. In the past two years, Zoe has gained some length but had not put on any weight. This became concerning when Zoe started to tire easily and her body began burning its muscle since the fat stores were gone. Do you know what it is like to watch your child struggle to thrive?
We decided to get a g-tube so that Zoe could continue to enjoy eating orally but have some extra calories via tube. Zoe has done well on the g-tube. She continues to eat orally, in fact she is eating more now because she has more energy and is doing more. We know we made the right decision, which gives us great comfort when dealing with the annoying aspects of the g-tube. Zoe has had several g-tube infections and right now we are applying silver nitrate to burn away some of the scar tissue. This is not an easy thing for a parent to do- when Zoe cries in pain, I am tempted to stop. But we know this is what needs done. In many ways we hate that Zoe needs a g-tube and we definitely hate the pain that it has caused her. But we know this is what Zoe needs.
Who am I to question the path Zoe needs to take in this life?
Every Day is a Gift
Zoe was once again critically ill this October. We again had one of those moments where we had to talk with the team about how far we wanted them to go in order to save Zoe's life. We again made the decision that Zoe's life is a life worth living and we want them to do everything they can to save our daughter. We again had an agonising few days where we could not be sure where the bottom was and how far down Zoe would go. And then...
Zoe bounced back. Like she always does. Like we hope she always will.
We are left feeling scared, helpless and sad. These things come up so quickly and there is nothing we can do to stop it all from happening. That thin veil of denial between thinking your child will live forever and knowing that all people in this life die becomes so thin that you see the other side for a moment. And it paralyses you. You can not imagine how truly horrible it is to lose someone so close to your heart until it happens. And we are lucky enough that it has not happened to us. But these moments, when Zoe's body is shutting down and we stand aside, helplessly, we get a glimpse of that loss. And it is terrifying.
Still Zoe is struggling. Another bout of pneumonia and she is still not herself. She tires easily, is in pain most days, she struggles. And our hearts break because we want to fix it all. And we can not.
And yet, here we are. At the end of another year. We are all here together. And so I am insanely grateful. To have this wonderful family.
Who am I to be so lucky?
Ella is One!
4 months ago