Today we’re honored to share a guest post from preemie mom, blogger, and businesswoman Stephanie – read more about her story at Urban Flowerpot or check out her shop of handmade creations.
I don’t write a lot about what goes on in your personal life these days – I did, after all, document every moment of your birth and first couple years. That’s a fairly decent prologue to any story.
Most of what comes next is yours to share when and if you choose. However, motherhood is my part of my adventure and finding the balance between us both is delicate.
I am writing this because I want you to know how hard I’m trying and how hard my heart keeps breaking. I want you to have the services you need now – not later, NOW. I don’t like making phone calls (which you’ll probably know by the time you read this) but I have – and will – make dozens for you. I will fill out any chart, circle choices, jot down notes, and take you anywhere you need to go.
You are a child with special needs.
What this means yet, I don’t know. Only that we have to change our approach to parenting and watch the world around us for possible triggers and help you work through situations that come your way. You have a sensory processing disorder which seems to stem from anxiety. I’m still learning more as I watch you in new situations. I guess I have a year twelve months to compile my notes.
I’m bringing Papa into my story now because he is the other major player. He might not be making the phone calls but he is at work making it possible for me to be here with you. He lives for the moments when he can bring you a box of bakery cookies and stay home and game, sing songs, and chase you. You both have a separate bond (as well as a shared one with me). That is important to us. I love when you two share your jokes with me…and that you have your own thing together.
Earlier this week we went to the early intervention clinic for another evaluation (sensory-related). I don’t have any more answers than I did before other than we need to see a behavioral specialist. Their answer to me, however, is “twelve month wait.” Not a year – they correct me – twelve months.
Yesterday I did your intake in the car on the way to Sesame Place. That started the clock ticking. Two to four months from that call they have promised I will receive paperwork in the mail which I will fill out immediately and return the next day. They will process it and then a few weeks after receiving it they will schedule our appointment.
Hot silent tears have splashed from my eyes as I try to hold in my disappointment – not just for you, but for all the children and parents who are waiting.
We are very lucky, Tristan. We are lucky we weren’t home when our home burned down. We are lucky to have a new home that is filled with color and handmade decor. We are lucky you remember to breathe and have been in good health this past year. We are lucky an 8 oz kitten waltzed into our lives and is now a pile of muscle fiercely protective of you.
You’re very smart. You do puzzles quickly and create elaborate playscapes that you get lost in for hours. You love art and music. We dance. You think Santa Claus is really Jack the Pumpkin King from The Nightmare Before Christmas. I didn’t see that coming. One day we’ll have to sort out the difference between a singing tuxedo’ed skeleton and Christmas, but I can see how you smooshed their stories together.
…and as I write a silhouette of Santa and his reindeer flew past a window on your cat game and you said, “snow day, snow day!” with glee. Last winter the flakes really came down and Papa got several snow days and we always turned them into big adventures.
We teach you about the joy of little things.
Yes, you have special needs. You teach us about them every day.
Some are predictable, others change. We do our best to figure them out and keep up.
You are blessed with a lovely friend you see often who encourages you to be braver in situations that leave you feeling unsure and worried.
There are so many people who care about you.
…most of all, your mama and papa, and I promise we’ll always try our best.
Would you like to share your unique perspective with our community of moms? Contact christa @ mommeetmom.com for information on guest posting!