The day the bubble popped

Special needs is a term that was only in my vocabulary when I made a donation or supported a cause. Growing up dreaming of one day having a family of my own I never thought it would be in my vocabulary. My daughter has special needs. 

Boy, that's hard to say out loud...or it used to be hard to say out loud.  It has been our life for over 2 years. The last 5 months of my pregnancy we knew it was a possibility but the day she was born I knew. I knew. I knew that my little girl was going to change the world! She has changed me in ways I never knew were possible.

We had friends, people we love that we have had a hard time admitting this to. We had all this time to prepare and have been living it but it has been so much easier to bury ourselves in her and stay home and just be us. I'm sure people either thought we were assholes or we were taking time with our new baby. But we had been hiding. I'm not now nor have I ever been ashamed. But it's just a hard thing to admit. This perfectly amazing, happy, beautiful baby will struggle. She might get picked on or made fun of and I have to think about how we will deal with that reality. I know I shouldn't worry about it now but when you are in this position you never stop thinking.

We were so scared to share this news with people outside our bubble.  People would ask "is she walking yet?", "No".  "How old is she?" "1, 1 1/2, 2... (you get the idea)"  Then the reaction of "Ohhhh, Well she is so cute and happy" Years ago I probably would have reacted the same way.  Now I don't even know if I would ask the question. 

I had contacted the Executive Director of the Dandy-Walker Alliance to get more information and hopefully meet other families and also to see what we could do to help.  He was great and super supportive and full of advice.  I logged onto Facebook one day and on the Dandy-Walker Alliance Facebook page and saw a link to petition our representatives to join the rare disease caucus.  Something clicked and I knew that was when we had to "out" ourselves.  We need the masses, our friends and family to help us in this fight.  To help us bring awareness not only to the rare diseases that Madison has but for other families that are fighting little known diseases.  So I texted my husband told him what I wanted to do and of course he was 100000% supportive.  I held my breath and hit share.  Of course I didn't think anyone would have anything negative to say.  But oh my god I had no idea the kind and loving things people had to say.   I had friends from college that I hadn't talked to in person since I left 10 years ago sharing the petition.  I was overwhelmed with the love!!!

When I got home that night I read all the responses to my husband and I couldn't help but cry!  Happy, happy tears!  I had the sweetest message from my best friend and she told me to "Live it loud and proud!" So now this is what I'm doing.  My biggest goal in this journey is to provide my girl with the best life she deserves.  We will do everything to make her happy, and to be a kind and generous soul.  She will not be allowed to feel sorry for herself because that is not what we believe in.  If we come to a day that she gets picked on or made fun of, we will teach her to handle it with grace and to educate.  I know these are lofty dreams but I think with a little work and a lot of love these are an easily attained reality. 

Positive

I think my brain is confused.  I'm a numbers person.  I make lists, I like to organize things, I think too much.  But crafts and reading and writing are so therapeutic and relaxing to me.  Right brain, left brain, I have no idea which side is which.  I hated English in school but loved writing papers.  In college I always made A's & B's on my papers. 

I found out I was pregnant in August 2010.  That week I went out and bought a notebook.  It has big pink, orange and yellow polka dots on it.  I like polka dots.  I started writing letters to our unborn child.  It's pretty cool to look back at the things that were going on in those early stages of our pregnancy.  I have letters when we told friends, food that didn't like me as much as I liked it, my trip to Chicago to tell my mom.  We were so excited the first time we saw her heartbeat!! I wrote about how excited we were to have our ultrasound.  That was when the writing stopped. 

My plan was to write throughout her whole pregnancy, but when the bad news came the writing stopped.  We processed, we researched, we cried, we were angry, and we were still so in love with a little girl we hadn't met yet.  But I stopped writing. I wish I had kept writing, I wish I had captured my true feelings through the last 20 weeks of our pregnancy.  It was a blur.  I still do remember loving being pregnant.  I felt like such a woman.  I felt the healthiest I had in my whole life!  We kept it from our friends, hell we kept it from most of our family.  We didn't want to burden anyone.  And if you don't say something out loud, it isn't true right?

I will get to that story one day.  My heart still wants to hold on to it so tight.