Sunday, May 11, 2014
My Mothers Day Tribute is going to be a very unique and heartfelt post. Thank you to my daughter Becca.
Being a mom of 12 I shouldn’t have favorites. But I cannot help but do. From the earliest moments of her life, I was tasked with an important mission. Not just being Becca’s mom but spending everyday helping manage her complexities of her Noonan Syndrome which has changed me.
It was 24 years ago, she entered my life and from the earliest moment I knew something was wrong. She was whisked off the NICU and then airlifted to the Children’s hospital where we began the journey together. She struggled with so much. She couldn’t eat and struggled to breathe. Soon her heart would begin to fail. Every system in her tiny body would be affected by this little known syndrome.
They found things in her case that would not fit though. She was rare even from the Noonan Syndrome textbooks. The felt she had Noonan Syndrome but her unusual blood counts, her systemic infections, and her malrotation of her intestines they wrote cried for a diagnoses. She would face the first of many surgeries and the day after surgery the pain in her face challenged even the veteran nurses. A shot of Fentanyl and tiny Becca drew ashen. The alarms blared. The code blue team began to working and I ran from this place in a panic. Stopped in the hallway by the social worker, they stood with me until I regained my sanity. My daughter’s heart had stopped. Eighteen minutes down they did manage to bring her back. I didn’t care what the prognosis the doctors gave her. I just had her now for a little while longer.
Months would go by. She would be ruled out for a heart transplant due to her fragile immune system and out of control blood counts. Our family fell into a deep hole of medical bills and the finger pointing of which insurance company was responsible for her catastrophic medical bills. Neither accepted responsibility and we fell into the complex public support system.
I made a promise to the God that I believe in, that I would love her and care for her to the best of my ability and knowing that someday I would have to let her go. But I prayed that something good would happen out of all this pain. Acceptance of the roller coaster of being a Mom with a critically ill baby was the gift God gave me. No longer was I running for her life. No longer tormented by the nightly night terrors when I would awaken I could never remember.
We have lived one day at a time, one moment at a time. Making memories or just surviving the next crisis that would inevitably come. Savoring each breath she would breathe as she was still here. In the middle of the night, sometimes I would just sit by the side of her crib and watch her little heart beat through her tiny pajamas. I wanted to remember everything. The days would turn to months and the months to years. Oh what a ride it has been. The ups and downs, the learning curve and the lessons my tiny teacher would give me. The biggest lesson is that we are joined by our hearts. I was tasked with being her voice and with that a huge responsibility comes. One misstep, or one second guess could plummet her into a life challenging crisis and too much was on the line. It was her life that I had to fight for.
My daughter, my teacher, my mentor, she would change me. She would inspire me with her determination. Her never give up will to survive and do her best despite the everyday life of pain, challenge and adversity. I would learn to trust my own intuition. If I didn’t listen to it, I would be sorry and Becca would pay a price.
I would learn that while the professionals may read the textbooks and understand the medical jargon, they did not know my daughter’s needs. I would learn to stand up for her. I learned that it was part of my job description to become an expert on Becca and would read every article I would get my hands on. I had no choice. The doctors would know little about Noonan Syndrome and when you have the child that is even RARE within the Noonan Syndrome Spectrum I had to become well versed. Too many times I would be asked what kind of Doctor I am? I am just Becca’s Mom.
I would learn that I could not do it all alone. I needed a team to help handle Becca’s complex care. A medical home model long before it’s time. Becca came home with an army of nurses all with one mission to complete, help Becca and help me manage her care so I would have time to help my other five children. Reaching out for help was not a sign of weakness, but of strength and help take care of me.
I learned that I had to care for me or I would ultimately crash and too many parents of children with special needs develop medical issues of our own from the exhaustion and stress from doing it all.
I learned that I would have to not only become well versed in the medical world. I would have to earn other degrees. Special Education Teacher, Lawyer, Medicaid Specialist, Occupational Therapist, Physical Therapist, Speech and Language Therapist, Technology Specialist, Supports Specialist, Insurance Claims Examiner and Appeals Specialist. The professionals have their degrees. Parents have their degrees earned by not having a choice. The Doctors have their Md’s, Phd’s. We parents have our own degrees. We come together to help our kids. When a doctor does not believe me or thinks parents no little, I have learned to help them understand, but if they won’t listen. They are replaced in Becca’s care team.
I would learn many ways of coping. Writing my thoughts was my way of releasing the energy. Writing became the way to help educate those on Becca and her complex disorder. I learned that sharing our journey is a way of educating others on the challenges faced by so many families with children with complex special needs. Writing from one’s heart is a powerful force to advocate, educate and change lives.
I learned that I would meet the most amazing people on our journey. So many lives my daughter would touch. I would find family of the heart in the most amazing places. She has lived up to that promise I made so many years ago. Her life would have meaning and something good would happen out of all that pain. It brought me to a new family, the Noonan Syndrome Family.
I learned to pay it forward. I did not want others to walk alone. Helping others is my way of coping. We had become expert parents in the special needs world. We needed to share our skills to make a difference.
I learned that it is not what you get in life, it is what you give. She was here for a reason and she challenges me to become better. Would I have ever believed myself capable of all the things I have done on the journey she and I have been on? No way. The old Mom was shy. She was a people pleaser. She was unsure of herself. She would have listened, trusted and done it even though she had doubts. I had no choice but change, her life and our family depended on it.
I learned to advocate, fight, stand up for what I knew was right, despite the odds.
I learned that despite the opinions of so many professionals, that parents do know something, and that parent blame is a real thing. When I finally wrote the long procrastinated book of our journey with Becca, I began it with I was just a Mom. My publisher argued that I was just no ordinary Mom and she wanted to remove it. I was just a Mom… just a Mom who was transformed by a little tiny titan who taught me the most important life lessons and what truly matters.
Thank you Becca for being not only being my daughter but my inspiration.
Happy Mother’s Day!