Saturday, August 13, 2011


Last night I went to visit my dear friend at her baby's bedside in the hospital. Her beautiful six-month old baby has recently been diagnosed with Type I SMA (Spinal Muscular Atrophy). The little baby, we'll call her "E", is in the hospital because despite everything her parents and doctors have tried she is not gaining weight. It's too hard for her to suck and the effort seems to burn more calories then she takes in, so she has to get a G-Tube (feeding tube - through the stomach). Unfortunately she is too weak for the invasive procedure at the moment, so the doctor's have had put in an NG tube (through her nose) to see if she can tolerate these feedings and help to get her strength up.

Little E, is so very small, weighing in at just over 10 pounds at 6 months old. She cannot do anything for herself, but boy can she smile. Somehow E seems to sense that her parents and family and all those that love her are hurting and worried. Every time little E goes through a procedure, whether it's an IV or invasive tests, she keeps that beautiful smile on her face. Somehow this little angel baby is emitting strength and love through her smile. It's an amazing site to behold.

My friend and I were talking last night and she was updating me on the newest things they've learned of E's condition and prognosis. No parent ever wants to hear the things they are being told and warned about. I asked my friend if she'd broken down yet, and she said in bits and pieces. Then she made a comment that has stuck with me, she said: "I don't know where I'm getting this strength or where I'm finding it". I considered this. My initial response was: because you have to, because you love her.

I still believe that. In my mind strength is love. We all have our days of tears and pity, but we summon the strength to be there for our children because they are there for us and because we love them. Although the trials that Molly endures are not at the severity of baby E, I see this same sort of strength everyday. Molly seems to have intuitively realized how hard it is to see her helpless in the hospital or suffering from an illness and she rarely blinks an eye when it's time for a doctor visit or a procedure. In fact, even at her sickest, she fools caregivers because she's smiling despite how lousy she feels. She is the ultimate patient and displays unattainable strength. From her strength I gain the strength to help her through it all.

I also firmly believe that each of us has a purpose in our lives, although not everyone opens themselves up to accept their path. Finding strength when Molly first started having issues was very difficult. I was so distraught that my daughter would be different, that she would not be like other kids her age, that she may not get married or go to college, that we may lose her - I couldn't see past that. When I came to accept that those things might be true but realized there was so much more to learn from Molly - I felt my strength grow. And although my friend may not be in this place yet (it took me years) I've seen her strength evolve as she's come to realize and started to accept that baby E's path is going to be very different from what she expected.

None of us can predict the future, nor can we predict tomorrow. Some of us can live in blissful ignorance of the day to day challenges of caring for and loving a medically fragile and/or developmentally challenged child and some of us have to embrace those same things as a part of our world. While you may dream of your daughter going to an Ivy League College, my dreams are smaller. I dream of my daughter waking up happy tomorrow. Part of my strength comes in every tomorrow that I get with my beautiful girls.

I should note I also believe in the power of prayer. There are so many things that could get us down. So many people are hurting out there both physically and emotionally. I pray throughout the day for those people I  know, that they may have the strength to deal with those things they cannot control and to make the right choices for the things that they can. If you have a moment, please consider adding Baby E to your prayers. Thank you!

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