Wow its been a long time...no posts since January and it is early June. Life is good and the levels of the girls in February were just great :) We are so excited. A few things happened since January so. My oldest now has been invited to two birthday parties. That was a first for me, and I have to say it was not easy for me to figure this out. Why? Well, I do not want her to feel left out when other kids are having treats. The way I approached it was by calling the parent of the kids having the party and found out what they are serving. Both parties had cup-cakes. That was an easy one as I just made sure to have cup-cake for my daughter at the party.
At the second party all kids were decorating cup-cakes (including my daughter). I am so amazed at this four year old. Not being able to eat items other kids can have is no big deal. She asks whenever there is food whether it is OK, or not. WOW...and it was just understood that it is OK that she has a different cup-cake.
The kids have snack days at pre-school. For my daughter's day we brought Whole Soy Vanilla Yogurt (we just love that stuff), strawberries, and bunny crackers. The other kids asked whether this was yogurt everyone including my daughter can have. These kids really amazed me. They were so excited that my little could also have yogurt that day.
Galactosemia to me really has become a way of life. It is an opportunity, it can be a little challenging at times, but truth be said...after E.Coli Mengengitis, and Sepsis this is all a piece of cake. You can make life difficult, or you can make life easy and livable. You can make Galactosemia a center of your life, or a part of your life. For me (us) Galactosemia is not the center of our life, but a part of it. I think of all the great things that come from it. We meet great people, make friends with people that we would otherwise have no contact with. Last year we met (and stayed) with a family in Northern Italy who also has two kids with this disorder, we know a family in Berlin, and many more. What great opportunity...Of course there are hard parts to it. Blood draws are always the worst for me. I just feel so guilty about having given my girls this gene. And then of course when my oldest asks me why we need to go to the draws and she told me "I do not want to have Galactosemia"...Those are hard days bringing me to the verge of tears. Those days I must remember what to be grateful for...I have two beautiful, healthy children. The girls are bi-lingual, growing beautifully what else could we want.
