Harder than I thought...

Abigail Leigh at 3, 8 months after diagnosis: (July 23, 1997)



Abby at 13 (July 23, 2007)


I should've known that I wasn't handling this as well as I thought I was. Today is my oldest daughter's 13th birthday. She's a teenager. Wow. I thought I was okay. I thought it was an "okay" birthday to get through. But I was wrong. I've been sad all day. I have a heavy feeling in my heart when I think about it. It's such a bittersweet day. And it makes me sad that my precious child's special day is even a tiny bit sad for me.

Usually I go through life accepting of the hand we've been dealt. I took a long time to find any peace with it at all, but thankfully time does help and healing does happen. You are never happy about it, but you can find positive things in the negative, and that makes it bearable to get through. But sometimes, like today, the grief rises up and smacks you in the face. It used to be when she reached the age where milestones should've happened and didn't...no first day of Kindergarten, no first ballet recital. No school shopping, no excitement over *any* Christmas. Or birthday. No first time saying "I love you Mommy", no first time spending the night with a friend. All of those things hurt. Knowing that this precious child whom I would do anything for will always need intensive care...intensive parenting....is almost more than I can bear. I worry so about how she'll be cared for when I am not around to do it anymore. I even worry how we will keep going as she gets to be an adult.

This birthday is a stark reminder that adulthood is flying towards us more quickly than we ever could have imagined. This sweet little girl who just yesterday, it seems, was 3, is now 13. That means that 18, and 21, and all those other milestones, are just around the corner. Before I can even imagine it, they will be here. My heart just aches. I look at her beautiful face and I want to protect her and love her and keep her safe from harm or being hurt. I want to know that she'll always be okay, that there will always be someone who will look out for her the way that I do. But I can't know that, and it hurts my mommy heart.

I am so proud of all that she is, and how amazing of a young lady that she is. She works so hard to do things that most of us take for granted. It takes her months or years to learn to do the simplest tasks, yet she just keeps going until she does learn how to do it. She never ceases to amaze me at the things she is able to do that we never thought she could. I learned long ago to never underestimate what she could do.

I have hope for the future-for her future-that treatments will come along that will help her to fully partake of the joys that our world holds. Everyone says "She's special, she's a gift to the world, blah blah blah." I don't want to hear it. Yes, she is a gift. Yes, she is special. And yes, she doesn't know what she's missing in her life. Or what she will be missing as she grows older and older. She'll never miss having a love, or having her cheek softly stroked by the person she loves. She'll never miss giving birth to her own child, or that sweet smell when you snuggle in for a kiss on their neck. She'll never miss appreciating a beautiful sunrise, or a wonderful gourmet meal. But that doesn't make it okay for me that she isn't aware of what she is missing. I want that for her, as I would for any and all of my children.

Many people can't understand how I feel, even other parents of children with severe autism. They love their child just as they are (as do I) and don't understand why I grieve over the nevers. That's their right, as it is my right to wish for more for my oldest girl. I look into her big brown innocent eyes and know that I will NEVER stop wanting more for her. It's not about being "normal" or "typical". It's not about having "things" or getting ahead. It's about sharing in all that makes us human. That's all I want for her. To be able to share in all the wonderful and awful things that make us what we are...She *is* a human, of course she is....but she will never be able to fully participate in life, in what makes us what we are. And that, in my opinion, is cause for sadness.