Progress

I don't write much about the heartbreak or sadness we experience with Madison, and I try not to think about it too much because we have this beautiful, bright, amazing little girl. For almost 3 years any doctors appt has been stress and anxiety filled. When you go 3-6 months in between appointments and you have no new progress to report, you dread the dr walking in the room. They look at her with a tilt in their head that always has meant to me that they are trying to figure out where we go now.  

I haven't wanted to jinx anything but we have had several appointments lately where I couldn't wait for the dr to walk in the room so they could see this amazing girl we are so blessed with. 

 

This girl that 2 years ago was being sent home from school with a less than positive ASQ evaluation. 2 years ago I sat in the directors office at her daycare and was handed pamphlets for FDLRS that would lead us to early steps, and then introduce us to therapists that are now a part of our family.  I had a scary and stressful pregnancy but that moment confirmed everything we had been waiting for. I lost it that day. I tried so hard to keep it together in front of someone who at that point I didn't have much of a relationship with but a "hi" here and there. She let me know it was ok to feel this and to lose it. Now I look up to her with more respect than I will ever be able to make her understand. The months and years after that she has guided me when I have been lost and scared. And now I can call her a friend. 

Madison has been released from her GI dr now for a second time. We are at 6 month intervals with neurology and her pediatrician. These are huge when not too long ago we were in a doctors office every single week. Whether it was Miami children's hospital or here. 

End the word

A lot of kids are being sent off to school today. New backpacks, shoes, the oh so important first day of school outfit. Something that is just as important as that is to teach our children to be kind. Please if you are still reading..teach your kids it's not ok to use the word retarded. If they see someone being picked on because they are slow, or they stutter, they walk funny, anything. Teach them to be brave and extraordinary and stick up for that kid. Be their friend.  Be their best friend.  What does picking on another child do for you? Does it make you strong? Cool? The popular kid? No it does none of these. 

What it does do is hurt the child that you are making fun of. It hurts their family when they come home crying. It's a hurt that can't be fixed with a band-aid or medicine. What can fix it? Love, tolerance, patience. 

My 2 1/2 year old can't walk on her own quite yet. She can do it great if she is holding on to someone's hand or holding something. Lately when I pick her up from daycare she wants to walk out to the car instead of being carried. This takes a long time. We stop at every mirror, fish tank, wave at every person on the way out. We hold up traffic. But the look of pride on her face makes it all worth it.    

This is that beautiful face...

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.