Thursday, December 13, 2012

The Women in My Home

If you didn't know, I am not the person in my family with the most health issues.  That distinction belongs to my daughter.  My daughter was born the same year I was officially diagnosed (my son was born the year my symptoms began).  When she was born, we were expecting a healthy baby girl (we found out she was a girl beforehand) and I was not taking any medications at that time.  Needless to say, the moment she was born, we knew we were in for it.  However, we actually had no clue.

My daughter was born with a cleft lip.  While immediately noticeable, it ended up being one of the smallest issues we've dealt with over the past six years.  She had heart surgery at 10 days old to fix a PDA, had surgery again at one month old to get a mic-key feeding tube and fundoplication, had two surgeries at 5-6 months old to redo the fundoplication and get a tracheotomy inserted due to a laryngomalacia and tracheomalacia, and surgery at 8 months old to fix her cleft lip.  The trach and feeding tubes were removed when she was four years old.  She is also deaf in her left ear, hard of hearing in her right ear (aided to normal with a hearing aid), has coloboma's in both eyes and is missing her semi-circular canals in both ears.  Besides this, she broke her neck last month, again due to a congenital issue.  Needless to say, my daughter deals with a LOT.   Yet, she is in a mainstream Kindergarten and is doing work appropriate to her grade level.

My wife is a stay at home mom, who has not only taken care of our daughter, but has ensured that she has thrived.  My daughter is a very special girl with an amazing attitude.  If you doubt me, you can ask any of her therapists and teachers who not only are amazed by the progress she shows every year, but her work attitude and desire to succeed.  But, I will say, if not for the mama bear of a mother she would not be doing as well as she is.  Also, in the past six years, my wife has started a foundation at my children's elementary school which has raised over $50k in its first two years, run a multitude of half marathons, finished a half-ironman, became a great cook and pushed my ass to workout countless times.

This week, my daughter's halo came off at the doctor after wearing it for eight weeks.  She will now be in a neck brace for an additional 7 weeks and then will probably wear a neck collar for a little while after that.  She should make a great recovery.  The night it came off, my wife commented that our daughter is her hero.  I would venture my wife is my daughter's hero.

In my opinion, they're both incredible and I'm lucky to have them both in my life.


  1. Hi - my name is John Frost and I was diagnosed with PD in Oct of 2008 and earlier that year in May, our youngest son, who will be 7 this month, was diagnosed with Autism at age 2 1/2. In reading this recent blog, I would also say that you are a hero as well in that you deal with each day. Correction on my part, I would have to say that your family is full of heroes. You are an inspiration and I know that I needed to read your blogs this morning. Take care, John

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