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.
With parenthood comes wisdom- my best piece of it, is do your thing. No matter who your child is, you are the parent, and if it’s right for your family, then it’s the right thing to do.
Caitlin: Although it was unexpected, Addie’s diagnosis turned you into a stay-at-home mom.
Chelley: Being able to be with Addie and go to every appointment is the best perk. I know everything that is said by every specialist AND I get to see all the milestones! It’s not an “easy” job, but it’s fun to be home with her.
Caitlin: There’s some quote that you hear all the time, something about how God only gives you what you can handle. I think that’s silly and that the truth is, we find the strength we need to find. You mentioned that a lot of people ask you how you find the strength to handle the tough stuff that comes along with having a child with special needs. So, how do you?
Chelley: For this situation, it’s far simpler than one could imagine.
I look at her.
There are other things I’ve faced, like the death of my brother in infancy, the loss of my 18 year old cousin, father and uncle in quick succession, a major car accident, and recession in one of the poorest states in the country. But, Life’s curveballs are defined by what we think will happen because we only know about the “ideal”, but what happens to us, is also what shapes us. Life is just life, and ideals are just ideas on what would be super cool if…
For me, it’s way cooler to just live it and hope to the heavens I’m doing ok.
I think the best thing we can all do for ourselves, as people, is stop having “such” expectations, as I call them. Things that will be “such a way” because that’s how we think they will be from a book, or movie, or even a friend. Experiences are unique to the individual- I know my husband has a completely different experience with Addie’s diagnosis because I do a majority of the day-to-day. Expectations are healthy, but the disappointment we feel because something “has” to be a certain way to make it “right” is a pressure we put on ourselves.
Sometimes when things aren’t picture perfect, they’re still perfect.
I love that so much. “Sometimes when things aren’t picture perfect, they’re still perfect.” Now, everyone say it with me, “Sometimes when things aren’t picture perfect, they’re still perfect.” Whether it’s a surprise diagnosis, a change in relationship status, or an unexpected career turn, life doesn’t always go the way we plan. But, like Chelley said, those are the things that shape us into the people we’re becoming. And that’s a beautiful thing.