When your kid feels less than perfect

For those of you who don't know, our daughter Lexi was born extremely prematurely (15 weeks early) and there were times in the first couple of months where  it was questionable whether she would survive.  She had a great deal of trouble breathing on her own, suffered grade 3 and 4 brain bleeds (on a scale of 1-4 with 4 being the worst), had eye trouble, heart surgery at 2 weeks of age, and just before we brought her home we learned that she received a blood transfusion from someone who later was found out to have hepatitis C. Thankfully the individual had donated the blood prior to contracting hep-c. There was a night, both the best and worst of my life where we were called to the hospital because they weren't sure she was going to survive.  We watched as her blood pressure and pulse/oxygen levels continued to fall into and beyond the levels that were considered extremely low and potentially fatal. Every so often her personal angel Dr Rodriguez would disconnect her from the ventilator and bag her manually.  We watched as her pulse/o2 level fell to 50% when normal is 93+, and her blood pressure fell to 16/8 with a mean BP of 12 when she should have a mean of close to 30.  We sat, powerless at the end of an open bed, watching the nurses and doctors work methodically to save our daughter, wondering if we were watching the last moments of our new baby's life.

We're the lucky ones, Lexi survived and every doctor who see's her for the first time is amazed at her abilities.Our favorite response thus far was from a hearing doctor in Hershey who said "Just enjoy her, you don't know how amazing she is given her diagnosis. Sure she has a little hearing loss, but it doesn't appear to be enough to really impact her, so just enjoy her."  Grade 4 bleeds result in a major handicap 86% of the time.  We've seen kids who had a grade 1 bleed who have trouble speaking, or will be in a wheelchair forever, and we are very fortunate that Lex has only some mild cerebral palsy on her left side resulting in her strength on that side being maybe 50-60% of her right side. She has less fine motor control with her left hand and foot than most kids and she has a brace that she wears on her left foot to help her walk with a better gait, although she walks pretty good without it.  There is nothing to keep her from having a full, happy life.

That said, on Monday my now 8 year old miracle daughter was reading a book to me before bed and I was holding her left hand as I often do while she's reading.  She looked at me and said "Dad, I wish my left hand worked as good as my friend's hands", and then followed that up with " and sometimes I don't want to wear my brace". She started to cry.  My heart sank, tears welled up and through swollen eyes I talked about how special she is to be alive, how kind and smart she is, I asked her if anyone had said anything about her hand or brace, and told her we all have things we're good at and things we're not. I struggled to explain to this beautiful 8 year old that any issues she has are superficial, and that reading at a level 2 grades above her own is much more important than whether she can move her fingers on that side individually. I reiterated that being a kind, loving, caring person defines you much more than whether you use some extra support when you walk. I also told her that if anyone ever treated her differently because of that, then she should tell myself or Tracey, or if we weren't around, our friends Ivana or Anjie.

I got her to bed and as I left the room, I sobbed. The thought of my 8 year old daughter, who by every measure is lucky to be alive, feeling as thought she is less than other kids because of these mild differences, was too much. This is the day I have dreaded. The day where you're kid feels less than perfect because in some respects she is different. How can you help your child be okay with being different than other kids when you know that there will be some that use it against her?  It's possible Lexi will never fully comprehend the magnitude of what it means for her to walk, talk, and even sit upright on her own, let alone to have such mild issues. Hopefully we'll be able to help her understand that her limitations are slight, and not what defines her. What has defined her life thus far is that she has the inner strength and determination of a  golden glove level prize-fighter that inside that tiny 45lb body. That serves her well, but I have to admit, can make her a bear to deal with at times. As a parent, you hope that those same traits help her deal with any insecure feelings and challenges she'll face as she progresses through middle and high schools and one day goes onto college.  She has no issue that would will keep her from splitting an atom, writing  a NY Times bestseller, or developing an AIDS vaccine, and her genetics already dictated that she wasn't going to run the 100M dash at an Olympic level.

Still, the idea that your child has become somewhat self conscious of a limitation she has, even if only for a day, kind of breaks your heart just a little.