Saturday, November 29, 2014


Six years ago today was one of the most difficult days of our lives. It was the day we left the hospital with our one healthy baby while our other baby remained in the NICU struggling to survive. Since then, the months of November and December bring an immense set of emotions that leave me eternally grateful yet, at the same time, full of sorrow. Mia defied all odds and for that I am forever thankful. But that gratitude is only half of my emotions. The other half is the sorrow I feel for all of Mia's hurdles/realities both past, present and future.

Earlier this week, Mia asked, "Why do I have to have an enema?" I explained that God made her "special" and so her body is different.  In that moment, I found it extremely difficult to hold back my true feelings. I wanted to say, "I am so sorry Mia. I don't know why God made you this way. It's just not fair." Today's question was, "Mom, when I get older like you and daddy, will I still have to have an enema?" I answered yes. "How about when I am a grandma?" Again, I answered yes. Then she said, "But it won't hurt as much, right? Because I'll be older." To that I wanted to say, "Well, no, you will just be used to it by then."

Is it really "special" to have your toileting dependent on catheters, even as a grandma? Is it really "special" to be facing a fourth surgery to improve your toileting? We use the word "special" to sugar coat everything but, the reality is, it sucks! So, as grateful as I am, I am ungrateful for the pain, the uncomfortableness and constant fight Mia has to maintain in her life. I am very aware that she shares this burden with many others who were born with disabilities and chronic health issues. I am also aware that there are many who endure so much more. In fact our dear friend Mason has an even harder fight on a daily basis and the same set of emotions apply when I think of him. I know she is "lucky" in many ways but it is all relative.

We have received our date from Cincinnati. Mia will be admitted February 24th for pic line, feeding tube placement and a two-day bowel prep. Her surgery will be February 26th, Samantha's birthday.As we celebrated the twins' birthday and Thanksgiving this week, I couldn't help but think about what lies ahead for Mia this year, for all of us.

I do have a strong faith and am so glad God chose me to be Mia's mom. Mia is special in so many, many beautiful ways. She is Grammy's angel number 5 and mommy and daddy's hero number 1. I am grateful but, at times, I am also sad.

I should apologize. My intention is not to be negative. We try to always remain positive for Mia, for our family, for ourselves. But the reality is, sometimes life just doesn't seem fair. As Mia's self awareness increases, my ability to shut off my true emotions decreases. I want to tell her that I feel so sorry for what she has to go through and that it's not fair. However, I know pity will not help her. Pity will not help me. So, we will put on our game faces and fight the good fight!

Then I look at these faces and smile! Happy 6th birthday girls!