23 months and counting...

I am starting to plan Sister's 2nd birthday party and I can not believe that another year has gone by. I thought that her first year went by fast, but this second year feels like a blur.



Just three months prior to her first birthday we received her diagnosis, 2q23.1 Microdeletion Syndrome. A group of numbers that meant so little to us that night, but mean so much to us now. We spent the first year of Sister's life trying to give her delays and "spells" a name, only to spend the second year trying to figure out what that name meant for her future. A future that was so different than the one we had envisioned for her. I was afraid of the unknown...how am I going to care for a child with special needs? Will she ever walk...talk...know how much I love her? How will my family and friends react to her diagnosis? Will she have friends? Will she be teased? Will her big brother fight for her? Will he take care of her when Hubby and I can't?

The questions and what ifs drove me crazy for months. I was loosing sleep at night, I couldn't concentrate at work, I was pushing Hubby away and desperately trying to keep up the appearance of everything being ok with my friends and family. Eventually, Sister's busy therapy schedule served as a distraction. When I started meeting other families and hearing stories of their child's success with therapy, they gave me hope for Sister too. I became obsessed with finding the exception to the rule. During my search, I began to realize that Sister could and would meet her milestones at her own pace. When Sister turned one she was rocking her new pink glasses, her favorite word was "daaa", was starting to sit up with assistance, barely had enough hair on her head for me to put a bow in, started drinking milk from a sippy cup, and ate her birthday cake all by herself like a big girl! These are the milestones that I will remember...not the ones that she missed.

That summer, I decided to face my fears head on. I quit my full-time job to stay home with my children. When Sister's "spells" became more frequent and were classified as seizures, I braced myself for what was to follow. Frantic 911 calls, hospital stays, more tests, trial and error with meds and dosing to control the seizures; I was ready. I started seeing a therapist to help me organize my thoughts and feelings and mend my marriage. I realized that I could not care for Sister (or Brother) if I was not taking care of myself too. I loved my family and I had to figure out a way to step out of the darkness that was surrounding me and move forward.

"You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along." -Eleanor Roosevelt

My next challenge was asking for help...luckily, my Mom was there waiting for me to just ask. She truly is amazing and I am so thankful to have her across town. My friends, some old and some new, have been so supportive and make me feel so comfortable to be myself...even if I'm being good, bad, weepy, or silly. Whether I talk to them once a day, once a week, or once a month I know who my true friends are. My marriage is stronger now that it ever has been. The only person that knows exactly what I am thinking and feeling is Hubby. He is feeling the same way, but we express these feelings differently and I am thankful for that. We are in this together, for better and hopefully it can't get much worse!

I found faith in God again. I began praying that Sister would have a better day tomorrow and not a better life. She is happy and loved...I needed to be thankful for her abilities. To start taking one day at a time. Sister was making unexpected progress in PT and OT. She took her first assisted steps in a suspension walker before she was sitting unassisted (something we are still working on). She was smiling and laughing and rolling everywhere. She may not have been able to tell us what she wanted, but we began to understand her. Sister makes new friends everywhere she goes...I am most known as the Mommy to the sweet little girl with pink glasses, and I'm ok with that!



Sister loves her big brother and I think he may even love her more than he loves me sometimes! I could sit and watch them play and make each other laugh for hours, and sometimes I do. I still worry about Brother and wonder if he's acting out at school for attention, or is it because he is four. Probably a little of both. I don't believe that he is going to grow up in the shadow of a sibling with special needs. Hubby and I, as well as, our family and friends make sure that both of my children know how special they individually are. I hope that does not change for either one of them as the outside world comes closer.

So much has changed for my family in the last 23 months. We are just at the beginning of our journey, and we still have a long way to go. I can only pray that everything that we have gone through individually and as a family has prepared us for what ever comes next.