This topic leaves me so heartbroken and so helpless and is on the forefront of my mind the last little while.
Gabrielle has 3 beautiful little siblings who she will, one day, leave behind. I used to think questions about Santa Claus or sex were tricky but now having to field questions from my 5 year old about death, dying and I-cell disease are my new 'tricky'. They, as well, are trying to make sense of this and are trying to put the pieces together and understand what is going on. Sadly, my 3 little boys will also have to figure out how to live day to day with the pain of losing their sister.
As a mother, I have no idea how to deal with this on a day to day basis. It pains me so much to hear James talk about how when 'Gabrielle's older she'll be able to...'. How the heck do you break it to a 5 year old that Gabrielle will not ever be 'older', she won't go to school, she won't go to ballet or gymnastics, instead she'll always be a baby. Or do you?
This evokes a whole range of emotions on any given day. Some days I feel so incredibly heartbroken that my kids have to go through this, and that I have to do my best as a parent to coach them and support them through loss and grief. What makes me even sadder is seeing how much love their is between them and how worried they get for their sister. They excitedly talk about when Gabrielle gets to go to Kindergarten, they openly express how cute she is, or how much they love her, they take on the role as a care taker, and they cheer on her accomplishments.
How many 3 year olds give nebulizers and help the nurses to distract her so that she'll eat more? How many 5 year olds are thinking of ways to cure I-cell disease and asking questions about why doctors can't help her or cure her? How the heck do you break that news to them? Or do you. Yes, my boys have been forced to grow up much earlier then most kids.
And then there's another part of me that stomps my foot down, with hand on hip like a fierce dragon mother and allows only joy, happiness and love to enter the house. If Gabrielle is going to live a short life, it's going to be the best damn one I can provide for her and their will be no sadness or tears. We will celebrate life, we will embrace the challenges and live day to day the best we can. This part of me doesn't always win over the other parts of me but I try my best to keep it at the forefront.
Our kids know that she has I-cell disease and that she will live a short life. It's hard on them and it's not until now that I'm realizing this. I guess I've been so wrapped up in my own grief, that I've forgotten about theirs.