Looking Back at the First Year With My Son With Complex Medical Needs

When many of us think about the “year of firsts,” we may think about the first year of experiences after losing a loved one. I’ve experienced this twice. Once in 2000 when my dad passed and again in 2007 with the passing of my mom. I have discovered a new “year of firsts” in coping with my son’s diagnosis.

The years of firsts after losing my parents were filled with stages of grief: tears, anger, countless smiles, shared memories of good times and new experiences as we created a “new normal” in my family.

I have to say the year of firsts with my son Johnny’s diagnosis was much like my years of firsts without my parents. When Johnny was first diagnosed with maple syrup urine disease (MSUD) and cystic fibrosis (CF), I grieved.

But unlike the grief I experienced when I lost my mom and dad, this grief had to be quick. I had to pick myself up, go on with life and be the best mom and wife I could be. I had a husband and a 3-year-old daughter who I needed to be strong for. I informed all those around us of what was going on. We made phone calls to family and friends, which reopened wounds that had already started to heal. I said goodbye to all the things I thought our life with Johnny would be. Into the year of firsts we went.

During Johnny’s year of firsts, he experienced his first hug, first kiss, first nursing, first snuggle and all of the wonderful things babies get to experience. But he also experienced these other firsts: IVs, set of vitals, blood draws, bacteria cultures, viral cultures, nebulizer treatments, enzymes with applesauce, a C-pap machine to help him breathe, NG tube, PICC line for antibiotics, oral antibiotics, five hospitalizations totaling eight weeks, more than 100 amino labs, liver transplant consultation, 12 clinic visits, a ride in a helicopter on his way to an emergency hospital stay and things I probably can’t even remember.

In my year of firsts as Johnny’s mom, I experienced the reality of having a child with two complex chronic medical diagnoses. I spent my first Mother’s Day as mom of two in the hospital surrounded by nurses and doctors, fed Johnny his first bottle, cheered his first crawl, gave him his first bite of baby food, watched him take his first steps, heard his first words, watched our daughter interact with him in the most loving way, enrolled him in child care, felt the love and support of not only our family and friends but my amazing employer and random strangers as well, became closer to my church family, grew in my faith and found inner strength I forgot I had.

As a family, we experienced our first holidays as a family of four, two of which were almost spent in the hospital but we got home just in time. We celebrated the good times, worried and prayed through the difficult times and learned how to work our lives around everything that comes with having a child with complex medical needs. I can say without hesitation that I didn’t go through any of this alone. My family and friends felt much of this first year with me.

I know this isn’t the be-all-end-all to the firsts that we, and Johnny, will experience, but it was truly the hardest year of my life. And to say, “I survived,” would be an understatement. I didn’t just survive, I conquered! When I experience rough patches and we hit those bumps in the road, I can look back on this last year and know that we made it through a year I never thought I’d get through.

Johnny turned 1 on April 11. Our year of firsts is over. We made it.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.