Parenting is hard. Can I get an Amen!?
But, parenting a child with extra needs…now that is extra hard.
March is a month that has my heart. This third month we give a shout-out to all of the kiddos who have a third chromosome in one of their genetic pairs, or trisomy. Today, we toast the families that are living with “extra.” An extra chromosome. An immense amount of extra love. And often, an extra challenge.
After dipping my toe into the trisomy world a few years ago, I learned how much extra energy is needed when parenting an atypical child. Our child didn’t fit in a “one-size-fits-all” society. We learned very quickly that we were the only true advocates for his needs. We wrapped our lives around keeping this tiny human alive and functioning. Unlike our other three children, he required round-the-clock care and monitoring. In his short time, he taught me more about life, love, and what I am made of than my other 3 “typical” children taught me in 10 years.
Though I was only honored to be on this atypical journey for a short while, as his trisomy (T13) was fatal, here is what I discovered of other mamas who are rockin’ the trisomy world:
Moms of atypical children are superheroes.
They are the most relentlessly devoted, loving, and hilarious group of women. They trudge through hell smiling, assuring you all-the-while that it’s not that hot. When they have a moment to surface, they use that time to generously reach out and share tips and tricks of how to graciously navigate the hard parts of raising an atypical child.
They are fierce advocates.
Atypical mamas have educated themselves on the ins and outs of healthcare systems, insurance companies, and educational systems. They have learned how to deal with the judgmental eyes at playgrounds, shopping centers, and carpool lanes. These sweet mamas will humbly tell you they aren’t “enough” but we other mamas know that they are the embodiment of all things good and holy.
These mamas understand that nothing is black and white.
When parenting an atypical child, they understand that the gray area is a vast expanse that can easily envelop you. When given a setback, they meet it head-on with optimism and courage. They understand that even the same diagnoses have characteristics that present themselves in grossly different ways. They look at typical children and are far less quick to judge than other parents, because they know that every child is unique. All children have areas in which they can excel. All children have goals for how they can improve.
Atypical mamas are acutely aware of everyone else’s needs.
They are so in-tune to the endless needs of others that the first place they cut back is for themselves. Befriend these mamas as quickly as you can. Reach out and offer to babysit. Invite her out for a quiet hour away. Buy her a drink…lord knows after paying for OT, PT, AE, CM, CBT, and every other acronym under the sun to advocate for her child, she deserves more than just a free drink. Encourage these mamas to take time for self-care.
They know that a diagnosis is not an identity.
Each child is an individual. Regardless of the trisomy diagnosis a child carries, each child deserves love, acceptance, and dignity. Set an example of inclusion. Too often people don’t invite atypical kiddos to birthday parties or play dates because “what happens if…?” No worries. Atypical mamas have learned to live their best life with a plan A, B and C in place for the what-ifs. Everyone craves a sense of belonging. These mamas don’t need pity–they need acceptance.
So, I celebrate this third month and all of those phenomenal adults, children, caregivers, and friends who acknowledge the beauty of a unique soul. I applaud those who have the blessing of “extra”- whether that be chromosomes, abundant love or unwavering strength.
I toast my boy in Heaven who was my “homie with an extra chromie”, who taught me the simplicity of joy and gives me the courage to choose it every day.
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