December 18, 2007 mcfadyena

Life Experiences

Family photoshoot November 2007

In the past weeks, we have had a bit of a rough go with adjusting to life with Sadie. Ry went back to working long film hours, often at night, 2 weeks after Sadie was born. Soon after, everyone got sick. The boys were up at night having trouble breathing from being congested, Avery is up at least once a night with nightmares, and since Sadie’s birth, he’s decided that he wants bottles of milk in the night (he’s never had a bottle of anything in the night). Add this to Sadie being up 3-4 times/night for an hour and a half (she’s a puker and burper and has trouble settling at night), and Ry and I were getting less than 5 hours of broken up sleep /night, often less than that. It is the first time I have experienced sleep deprivation like that and it was tough.
With this experience and the experience of Trey’s diagnosis and the journey this has brought, I am beginning to find that I am having a harder and harder time with our culture’s “everything is great” attitude. I am finding even more than before, that I am attracted to people who will admit when things suck. They will talk about the highs and the moments of beauty, wonder and pleasure, but they will also talk about the lows and not hide the lows like they are a sign of weakness or shame.
And on a different note… this past year… This time last year we were still considering transplant and Trey had not yet began ERT. 2007 has been an awesome year. Trey began ERT, we began an MPS II Fund through the MPS Society, we got pregnant, we found out we were having a girl, an echogenic bowel on my 19 week ultrasound was later shown to be wrong, we raised over $30,000 at our first “Tacos for Trey” fundraiser, Trey’s development tests in May and November showed us that Trey’s CNS is doing well and has a 99% chance of staying that way (for those who know this disease, that is monumentally huge and I don’t know if there is anything else in the world I will ever be more grateful for), and we experienced the birth of our beautiful baby girl on October 30. What a year to be thankful for. Definitely one of the best years of my life. Happy Holidays!! We wish you much love and all the best for 2008.


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