09 June 2014
08 April 2014
22 January 2014
one year ago today, we had ruby's first neurology appointment. two weeks later, two days before my 30th birthday, we got her diagnosis of SMA.
earlier this month, I was having a lot of anxiety & flashbacks to those days last year, when I just knew something was really "wrong" & then feeling like we were living our worst nightmare.
a year later, some days are really painful, but those days are few & far in between. this is our life & it is wonderful. it's not what we imagined it would be. it's so much more. SMA & all that comes with it has taught me so much about perspective, about gratitude, and about faith.
in just a few months, we will welcome another baby. this time we will know from the beginning that he will also be affected by SMA. we won't worry for months about how best to help him, we will know how. we won't experience a "diagnosis day" like we did with ruby. we will have a team of people and support in place from the get-go that we trust to help support him when the time comes that he needs the extra support.
when we got ruby's diagnosis, I felt like everything had changed in an instant. but almost as quickly, I realized that nothing really ever changed at all. we are raising our kids, just as we would if SMA didn't affect our lives. instead of living in constant fear of what the future may bring, I live each day, focuses on being thankful for what we have.
"may your choices reflect your hopes, not your fears. - nelson mandela