By Vital Chatter on August 27, 2014
Two and a half years ago, life threw A is for Adelaide blogger, Chelley Martinka, a curveball that completely changed the course of her life. I wanted to talk to Chelley about the way she not only handles, but embraces the unexpected in her life. I’ll keep it short here so Chelley can tell her own story, because she does it beautifully…
Caitlin: Can you begin by telling me what you were doing about two and a half years ago?
Chelley: This time 2 1/2 years ago I was just having my first child, Adelaide Eileen (Addie). I was concerned about “something”, chalk it up to mother’s intuition, but never really spoke up until her 2 month appointment- which was at 9 weeks. From that moment on, life has been a whirlwind.
Addie was hospitalized for dehydration at 9 1/2 weeks, and during her stay at the hospital, they made the diagnosis of Achondroplasia, the most common (1 in 40,000 births) form of dwarfism.
Caitlin: So, for those of us who haven’t had children yet, I think a lot of us fear the unknown. What will it be like? How will my life change? I imagine having a child with special needs is THAT, times ten. How did that diagnosis change your plans?
Chelley: Ultimately, it gave me a calling- and that’s not even me trying to find some silver lining- the opportunity to write presented itself (in blogger form) and I ran with it. As far as the other plans…
I had a goal of rejoining my employer from temp to full time 6 months after Addie was born, but due to her weekly aqua therapies, specialists ranging from Boston to Providence to Wilmington (DE), it financially didn’t make sense for me to continue working. I always imagined myself this rockstar career mom in heels and Chanel’s, but that wasn’t my path. Many days I end up working with a napping toddler under my arm, and praying that another viewing of “Nemo” will keep her busy during conference calls… I consider myself a rockstar mom, still. It takes a lot to be a parent, regardless of your situation.
Just being a parent changes life, but all the things you see in movies and commercials become something you still consider fantasies- even though your friends swear by those moments. Milestones are different, appointments are different, and your relationship with your partner becomes about survival of the family. Special needs are known for ripping marriages apart, and Dave and I work very hard to keep our love (and communication) fresh.
We also thought that Addie may be an only child because traveling for specialists and some of the stressors that come along with special needs can be overwhelming. But there are so many what-ifs, and Addie is such an amazing kid, that we decided to expand our family again. Everyone is so excited, so while I’m glad we put extra thought into it, I’m thrilled that we made the right decision that we could and would embrace everything life has for us, and do it with gusto!
Caitlin: Yeah, I think that’s great. You’re expecting in September!
Chelley: Yes. Camille Thea is due September 24th!
Caitlin: As you begin to imagine your life as a mother of two, how are you approaching this differently than when you were expecting Addie? What is the wisdom that comes from having a child with special needs? A life different from what you expected?
Chelley: I think I am researching more, but from a perspective of wanting to understand rather than a place of fear. My Google really runs the gamut from searches for typical milestone charts, to children who are diagnosed with different learning disorders, autism, Down Syndrome. I do light reading each week- just to know. At this point, with experience of being a mom of one under my belt, I’m more lax about being pregnant- but with a rare diagnosis, I know that all the prep work we do as parents can mean nothing to the child we have.
I also do advocacy work, so I like to keep up to date on everything I can happening in the special needs world- it’s important to me, more so because I have a child who lives in that world.
And there’s my goal of not living our lives as perpetual victims of special needs. It’s just an aspect of Addie and our family. I try to focus less on Addie’s needs and more on her adapting from the go- which, for now, is her using stools and climbing safely. We don’t have a child-proof house because Addie can’t reach the things we don’t want, but as I watch her, I am learning where a child of average height will be and seeing that we need to move a few pictures and candles.
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