Not Without a Fight

I hate it when I worry myself silly about something that turns out to be nothing...but even more than that, I hate it when I worry myself silly about something that turns out to be something.
So this whole transition process just sucks. We are losing our much-loved Early Steps team, and moving into unfamiliar territory. And from the start, I've felt uneasy about this process....but I convinced myself that everyone feels this way. Then came the first transition meeting, complete with condescending remarks about my "expectations" for Maddie's therapy within the school system. After that a new concern emerged...What if she doesn't qualify for these services? Is it even possible?? Everyone told me not to worry about that...She has a diagnoses, she will most-definitely get the services she needs...Relax! So I tried. But I couldn't shake the uneasy feelings and worry.
So Maddie had her screening this week, and now I know my worries and concerns were totally valid. She rocked it...like blew them outta the water, awesome. They couldn't get over her vocabulary and how logical her thought process was. She charmed everyone in that place, and I was proud. But the area I was most concerned with was the PT screening...which was really non-existent. There was a small stair-stepped bridge that they asked her to walk over...She said "I need some help", so the lady offered her one hand. Maddie says, " I need 2 hands to do it", so the lady takes both of her hands and helps her over it. That was it. The entire mobility portion of the screening was those steps, and she couldn't do it without help. So after all the exams were complete, I made my way to the desk for the paperwork, and was shocked to hear the same lady say, "We really don't even need to schedule a PT evaluation, because she has AFO's and gets around fine with those." Surely. not. I turned around to look, and said, "What do you mean, no PT evaluation?" They then explained to me that it was "highly unlikely" that Maddie would qualify for any PT services...Adaptive PE only. I was baffled. "How can you possibly form an IEP for a child with Spina Bifida, and NOT do a PT evaluation??!! It was on, and the claws were out. After some discussion (mostly tearful rambling on my part) they decided that since Maddie was already getting PT through Early Steps, it would be best to go ahead and do a PT evaluation just to "cover all their bases". Wow. All along, this has been my nightmare. We've been denied for everything under the sun because Maddie is just "not disabled enough". Please don't get me wrong....I am so completely grateful that she is doing so well. And yes, like many have told me, I understand this is a good problem to have. But it doesn't change the fact that when Earlysteps ends in June, so does all of Maddie's therapy that came with it. We are completely depending on the school system to pick up where they leave off...and now I'm not sure if they will. I hope and pray that if Adaptive PE is all she gets, then it is also all she needs. And I have to trust that this will all work out just fine...but for now, I'm worried.

3 Years Later: Someone Else

March 17th will be 3 years since first hearing that Maddie would have Spina Bifida. Three years since receiving that phone call that changed everything. In that moment I felt as if my world would never be the same. I was so completely broken, that letting myself go there…even now, is still difficult. It’s difficult…but not for the reasons it used to be. Now, it’s hard for me to remember the thoughts that consumed me then, because I realize how wrong I was. I often wish I could go back and somehow shake myself out of the depression that robbed me of so much joy in my pregnancy. Just to go and tell that girl “You can do this!” “Everything is gonna be ok.” If I could have looked into our future, and seen what an amazing little girl Maddie would be, and how truly happy our life is, I would have saved myself so much stress. I wouldn’t have cried myself to sleep for more nights than I care to remember. I would have loved my baby girl, and looked forward to meeting her, instead of worrying so much. I would have focused on everything that was right, instead of wondering how things had gone so wrong. I can’t go back there and undo what’s done. I can’t take away the thoughts and prayers that I am ashamed to have prayed. What I can do is take every opportunity to let the world see, that the things that make my daughter “special” have nothing to do with “special needs”…That her laugh is often the highlight of my day…and that every parent should be so lucky to be blessed with a little girl like this.



I often reflect back to the beginning around this time of year…I remember the emotions like it was yesterday. So you can imagine my surprise when just a week before our D-day rolled around, my Doctor’s office calls again. But this time it was someone else. Someone else had received that dreaded phone call. Someone else saw their dreams fall apart. Someone else felt broken, and felt their baby girl was broken too. My heart ached for her. The nurse asked if she could put us in contact, and I said “absolutely”. My phone didn’t ring, and my heart sank. I knew what she was feeling. I knew she wouldn’t call. I remembered my unanswered prayers…they all involved setting my girl free from a life of pain and suffering. I needed this woman to know, it isn’t a life of pain and suffering at all…It’s everything I ever dreamed it could be. I emailed her my blog, and she saw my Maddie. She saw our crazy, normal life. She saw a happy family, with special needs, that wouldn’t trade our life for anything. She saw hope…and what looked like the end, suddenly became a beginning. So three years later, we’ve come full circle. Another sweet baby girl will come into this world and face all its challenges head on. Another family will be changed…for the better. And someone else won’t have to cry anymore.

Sometimes I lose sight of the big picture. Sometimes I forget how we got here, and how our life was before. Our life is great today, and Maddie is doing awesome. We’ve settled into a comfortable routine that involves preschool, therapy, soccer, church, and so much more. SB doesn’t play the role it used to play…so it’s easy to forget. But moments like these, where I actually see how our journey can make a difference to another, and I remember. I remember how D-day rocked my world. I remember how desperate I was for answers, and how much it hurt to breathe. And I hope I always remember…. Because even though that kind of pain is a distant memory for me, for someone else, the journey is just beginning, and they need to know, “You can do this, and it’s gonna be ok.”