Moving Forward

On December 3, 2021 everything changed, yet it all stayed the same. On a macro level, the Angelman Syndrome diagnosis was a life changing diagnosis. However everyday life kind of stayed the same. Maddie was already in therapy and following with multiple specialties. Adam and I still had to go to work.

One difference is we had to get up to speed on Angelman Syndrome. Not only did we have to get up to speed on Angelman Syndrome, but Maddie’s caretaker had to get up to speed with Angelman Syndrome. We call her Maddie’s Yaya. Yaya is with Maddie 20 hours a week. Not only was Yaya getting up to speed, our friends and family were learning about the syndrome. We are so thankful that so many of you have jumped into this pool with us.

~Maddie and Yaya

The first few weeks after Maddie’s diagnosis were some of the darkest days we have faced in our lives. We were scared of the future, what it would look like, how we would handle it, and terrified that we were not going to do the right things for Maddie. Countless friends and family members stepped in to offer support. Our work families rallied behind us, strangers reached out to tell us it would get better, and amazingly, the days aren't as dark as we thought they would be.

One of the most heartwarming gestures a person can make to someone going through a life changing diagnosis, is to educate themselves on the diagnosis. From friends and coworkers who took the time to read up on Angelman Syndrome, to Yaya who has become an expert on recognizing Maddie’s communication cues. Yaya also participates in Maddie’s home therapies when we are both at work. Family members have expressed interest in getting involved in the AS community. Our siblings have donated money and have signed up for webinars. They are gearing up for this Springs Angelman Syndrome walk. This has made our new reality a little easier.

As many of you know, this is a difficult journey Adam and I are going down. Early on we both focused on the divorce rates for couples with special needs children. The rates are significantly higher, how much higher varies by source. Even though we’re in a good place in our marriage, we really wanted to make sure we stayed connected. We’ve set aside dedicated date nights in order to stay close to one another. This has helped us tremendously in both how we care for our marriage, and care for Maddie.

Life may not be what we imagined it would be for us. But this is exactly what we needed. Both Adam and I have improved in our communication with one another. We have learned to not take life so seriously, and we have even learned that life is going just as it is supposed to. Every day that we wake up to hear Maddie’s giggles and see her smile is just a small reminder that it is okay to move forward. We are going to take the lead from Maddie, and enjoy what life has to offer.

-Written by Nicole Birchmeier