Reflecting on How I Got Here: Welcome to ‘The IncRETTibles’

If you have a child that is diagnosed with a rare disorder, you’ll likely find yourself asking questions like, “How did I get here?”

I’ve heard people say that “God only gives you what you can handle.” Well, apparently, God thinks I’m a badass, because he gave me a child with Rett syndrome.

After much reflection, I’ve decided to share a few big moments in my life that helped prepare me for this journey.

Dear 4-year-old self: You visited Grandma Evelyn every day during her chemotherapy. Those memories will come back to you when you return to the same hospital when you’re 28 for prenatal care before the birth of your first child, Cammy. You will spend the next dozen years attending regular appointments and hospital visits with her.

Dear 5-year-old self: You watched your mom crumple to the floor when she learned that her mom had died. Another life-changing call will happen on Jan. 7, 2011, when you are 31, and a doctor confirms that Cammy has Rett syndrome. 

Dear 7-year-old self: Stop changing the rules during jump-rope so that it’s always your turn. Instead, change the rules to help others. Give everyone a turn. One day, you will be adapting and changing everything to even the playing field for your child.

Dear 8-year-old self: Mrs. Smith asked you to invite Jane to eat lunch with you so that no one ate alone. Now you understand why Jane is always near tears. Everyone needs a buddy. You’ll recognize the importance of this when Cammy is invited to her first school friend’s birthday party. 

Dear 10-year-old self: When you and your brother discovered your Christmas gifts, you thoughtfully wrote Santa a note that said, “These gifts are nice, but we’d really like ___ instead.” Your mom then took away Christmas for the entire family. This is the most important lesson she will ever teach you.

Dear 11-year-old self: Your dad, acting as your team coach, pulled you, his star, out of games to give everyone equal playing time. Letting everyone play is important; the score is not.

Dear 15-year-old self: When you needed to get a physical before basketball tryouts, your mom copied the one from the previous year — including the date! Don’t forge doctors’ notes for your child. Someday, the accuracy of the information will be a matter of life or death. 

Dear 20-year-old self: We are not immortal. The first time a friend your age dies is on spring break. Death does not care how old you are. These facts will be reinforced every time you receive word that another child with Rett syndrome has passed away.

Dear 23-year-old self: You are a high school teacher at a peer buddy basketball game — the biggest event of the year. The adapted PE class has been practicing all year for this, and the gym is packed with people cheering for the special needs students.

Look at the smiles and happy tears on the proud parents’ faces, knowing that this is their child’s day. This is a little piece of “normal” for them. Look at all the aides who are so excited to help their special needs buddies.

Now pay close attention to the girl in the wheelchair rolling up and down the court with the assistance of an able-bodied student. She has Rett syndrome. She pushes the ball off the tray of her wheelchair through a hula hoop and scores a basket for her team. Her family is so proud. You will make sure your daughter knows how proud you are of her.

Dear 27-year-old self: You have no idea how lucky you are to be marrying Billy. He will be your rock. When you feel helpless and hopeless, Billy will tell you that it will be OK. When you are afraid your daughter is too fragile to play with the other kids, he will pick her up and toss her around to show you that she can handle it. 

Dear 29-year-old self: You were right, you were meant to do something big. But you were also wrong. Something bigger than staying at home to raise your kids is in store for you. Cammy is an amazing, seemingly perfect little girl who makes you realize just how much your parents love you, because you already cannot imagine your life without her. She helps you see a new side of Billy and love him more than you thought you could.

Dear 30-year-old self: Trust your instincts. You are right — something is wrong with your child’s development. Keep searching for the answer, even though friends, family, and doctors tell you that she will catch up.  

Dear 31-year-old self: On Jan. 7, Cammy is diagnosed with Rett syndrome. You need to know you did nothing wrong. You are not a victim. You are Cammy’s mom. You were meant to use your past experiences and the lessons you’ve learned from your parents, family, and friends to advocate, persevere, and inspire others.

Dear current 41-year-old self: All of these moments have led up to your present life. All of those important lessons you had planned to teach your daughter? Forget them. Cammy is teaching you more about life than you could ever possibly teach her. Just show her how to be happy, polite, and kind, because the rest is small stuff. Remember that Cammy Can!

Halloween 2016. (Courtesy of Jackie Babiarz)

Follow along with our journey at cammycan.blogspot.com.

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.