Mornings

My morning routine is a little different than most moms - even if they are single moms. I have to feed & administer seizure meds to my daughter via a feeding tube, change her diaper, dress her, and put on her AFOs (foot braces). She cannot assist me so I am turning and lifting 72 lbs. all by myself. Once she's ready, I lift her to put her in her wheelchair.

Right now life is even more different for us because we do not have our own place. We are living in a bedroom at a friend's house. I am so grateful to them, but it's hard. I am a late night person and the t.v. and computer light sometimes wake her up. Sometimes when she wakes up she'll have a seizure - not fun - and then I feel really bad.

Well, have to get ready to go to work - I teach middle school students with learning disabilities. I will be back tonight to explain why we currently/temporarily don't have a place of our own.

My daughter

Many people say, "Oh, I'm so sorry!" when they meet my daughter and me. I understand why they offer their sympathy or maybe empathy but I don't agree. You see, my daughter was born with a rare syndrome, Aicardi Syndrome. Her life expectancy is unknown. She is 12 years old now and is still in diapers, cannot roll over or sit up, has a feeding tube and daily seizures. She is on daily medications to help control her seizures.

When she was born I thought I had a healthy baby. Little did I know that in 2 months from her birthdate, my world would be rocked. She started having the seizures when she was 2 mos old. After an MRI, they found 4 cysts in her brain. They successfully drained them and I spent my first Mother's Day with her in the ICU @ St. Pete Children's Hospital. Two months later, my world was rocked even harder when she was diagnosed with Aicardi Syndrome. The life expectancy of girls with this syndrome is unknown and many girls to make live past their teens. She is already beating the odds.

I decided long, long ago when she a little baby that there was no point in me sitting around feeling sorry for myself. Sure, I was sad that there was the possibility (now probability) that I wouldn't have mom/daughter talks with her like other moms and daughters do. She's 12 now and instead of buying her make-up or nail polish, I'm buying bibs and diapers. But guess what? I'm glad that I'm buying those things bc that means she still here with me. Don't get me wrong, I have my days when I get down. I see other little girls that are younger than Dakotah doing way more than she can. I see them calling their mom "Mommy" (this I think is one of the hardest things).

I will tell you now that I do not view her as burden, but rather a BLESSING. She has taught me so much about appreciating the small things in life. She has affected my life in a positive way and for that I am grateful. She has given her older brother an appreciation for all the athletic things he can do - the fact he can run up and down a soccer field.

I am starting this blog in hopes of journaling my journal as a single mom to a child with a disability. Life is always easy and we don't always get what we want, but it's what we do with what we have been given that makes all the difference in the world.