by Melissa Vanderburg
about the author:
Melissa Vanderburg and her family found out in Spring 2021 that with her 2 year old son, Jericho, has Duchenne Muscular Dystrophy. To follow the DMD journey of the Vanderburg family, please visit their Facebook page, Jericho’s Journey.
Newly Diagnosed in the States
Duchenne is a word that up until March of 2021 I had never heard before. It is a word that I don’t wish any parent to ever hear has affected their child.
I’m Melissa. I’ve been married for 5 years (together for 11) to my husband Jeremy. I have a daughter Zia who is 12, a daughter Zoe who is 3, and my twin boys Gryffon and Jericho who will be 2 in December 2021. My twin pregnancy was very difficult and my sons were born 5 weeks early. They spent time in nicu and were hospitalized again for sickness at 2 months.
I immediately threw myself into research and support and anything to help me understand this disease that I was now aware was going to slowly take my son away from me. I thought I could see the light at the end of the tunnel with all of his therapies I was already doing with him and I just to feel completely blindsided by this disease I had never heard of. I was hurt and broken and just completely torn apart by what was going to happen to my little boy.
Fast forward to today.
That dreaded word that I fight every single day has also taught me to enjoy every moment and has made me a better mother for it. The quality of time I have with my kids is so much richer for it. I’ve learned how to advocate and not be afraid to tell doctors what they need to hear, even if it hurts their ego. I’ve learned that my husband and I grieve differently and that’s ok.
It is so hard to hear, “Well at least you found out early and that’s a blessing.” It is because we get time to make decisions other parents don’t get. At the same time, it gives me more time to have to mourn the slow passing of the life I had planned out for my son.
For more of Melissa’s story, click below:
DMD & Pre-school Decisions