A Tidal Wave of Emotion
In our parent grief group, the feeling of losing a child was perfectly articulated. Losing a child is like being in a row boat during a storm. The grief hits you from all sides. The choppy waters of grief hit you from all angles. As time goes on, the pain remains, but the waves are more spread out. Your emotions start to become more predictable, but there’s always a possibility of a rogue wave during the storm.
This past week was a rogue wave. I was hoping to get back on track with our blog. I was hoping to talk more about the day to day of an Angelman Syndrome diagnosis, but this past week too many waves hit my boat. Not only was this past week International Angelman Day, but it was also National Donor Day. Nicole and I were also invited to speak at St Patrick Parnell about our daughter. To put it plainly, this week was rough.
On a positive note, over $1.700 for the Angelman Syndrome Foundation this week. We spoke at St Patrick Parnell, and the school raised over $1,200. Also, in my blog post about my grandfather, our family decided that part of the donations from his funeral should go to the ASF. He loved our daughter so much, it was only logical he would support the cause. To say this revelation brought tears to our eyes would be an understatement.
The rough week began on Valentine’s Day. This year, February 14th was National Donor Day. I detailed earlier about the gifts that Maddie gave. She donated her kidney’s to a 21 year old female. She also donated 3 organs to a 7 year old boy. I’m so glad these two individuals were able to live. That’s also why I feel so guilty.
This blog has been based on the fact that I am always going to speak the truth. I am always going to tell you how I feel, the good, the bad, and the ugly. To be honest, I’m jealous. I’m jealous that these families are able to love, kiss, and hold their child. I also feel guilty that I’m jealous.
I accepted Maddie’s diagnosis. Even though it was a gut punch, I loved my child for who she was. I tried to learn everything about Angelman Syndrome. I accepted that I would never walk my daughter down the aisle. I moved mountains. I took her to the best doctors. I enrolled her in the best therapies. I did my damnedest to make sure she was happy. I accepted her for who she was. She was my child. I still can’t shake the fact that I failed her.
However, I still celebrated February 15th, International Angelman Day. Even though Maddie is no longer on this earth, the fight continues. There are so many families dealing with this syndrome, day in and day out. There are still families fighting for a cure or a therapeutic benefit. They don’t want you to feel sorry for them, they just want to be heard. They want you to put yourself in their shoes. The daily challenges, the struggles, and the little wins.
I am so humbled by the outpouring of love shown by family and friends. I cannot thank you all enough for wearing blue and using the #rembembermaddie. From family, to coworkers, to friends, and all of you who wore blue, thank you.
Even though the stormy seas wore on me this year, it doesn’t mean that the mission has ended. It doesn’t mean that I’m not going to stand tall next year. It doesn’t mean that I won’t better myself as a human. We can all learn from these angels, love is the only thing that matters.
Written by Adam Birchmeier
