Feel like you’re a world apart from what your life used to be? So much changes when you become any kind of parent. Especially the parent of a special needs child. Or if you’ve unexpectedly gained an angel baby. Or if you find out it’s going to be harder than you thought to start a family. Or living the parenting life just wasn’t what you thought it would be.
Who you think you are becomes somebody new. You get lost in what you think it’s supposed to be before you start noticing the signposts of experience.
You learn skills you never thought were possible for you. Another role you take on in parenting is caretaker. Or you’re holding vigil for your heart. Or you’re learning how to live all over again because your life gained a whole new level of complicated.
You learn the impossible is absolutely possible. That you can survive far more than you knew. That you can overcome, and will, because you must.
I have a swap between my 18th and 1st chromosomes. My daughter has partial Trisomy 18. My home’s a special needs household. So I’ve lived all three — navigating the impact on my fertility, trials of the NICU and learning to take care of a kiddo who has a rare genetic disorder, trying so hard to build a better life to meet her special needs, and more.
My husband and I have had special needs parenting adventures since 2015 when our daughter Aubby was born… a lot of hurtful experiences that paved the way to miracles, lessons, and personal development.
I joined a few support groups after we brought our daughter home from the NICU and I’ve learned so much by trial-and-error. But I wanted to help other families like mine in a bigger way, so turned to share what has worked for me.
What does ChromoChallenges offer?
ChromoChallenges is a support blog for Trisomy 18, Balanced Translocation, and Special Needs living. It’s a blog to help other parents find their ways out of the dark. I created this blog to speak more at length about how my family cares for our daughter’s needs and about what we’ve experienced.
The Care Tips tab is a small but growing library of things my family has learned to do to optimize care for our child who was born with Partial Trisomy 18.
Finally, the Moving Forward tab has other resources and words for spiritual relief, self-reflection, and transformation. If you hover on the tab, a page for Trisomy 18 Warriors you can follow on Facebook will show.
ChromoChallenges is my way to share:
- how I help my daughter who has partial T18 develop her potential
- experiences with having a Balanced Translocation
- how mundane-meets-medical after my second child who has typical chromosomes
- info for families new to medical parenting and special needs living
- answers for requested content or questions you contact me about
- whatever else I learn — research, experiences, care methods, and other resources
- everything I wished I’d known at the start of my family’s journey
And maybe this blog will highlight ways others can find their way through the deep darks.
Thanks for visiting.
Nice to meet you. Welcome to the life of a medical parent, and to the courage it takes to stand for who and what you believe in.
What I know is– It’s okay to not be okay. What we need to do is accept and care for where we are.
The way forward is you need to believe in you.
Believe in your child. Or if it’s where you are, believe in your angel. Believe in your family.
Don’t get caught in “can’t” – so much more is possible. Just find, allow, and be open to reaching your best outcomes.
There is more to this hard place– Grow.