the story of h a d d i e
Written by her mom....
beauty & terror intertwined
this is just the beginnings of my thoughts...I may add to this at some point but hope to give those of you who do not know about haddies life & ours, a small view into it...
hadley rae was born on november 23, 1998...I had a normal pregnancy and delivery...something seemed not right about her when she was born but there was nothing obvious...her apgar was normal...she just seemed different.
we knew at birth that she had some hearing loss. colorado is one of the few states who does routine newborn hearing screens...at frist the audiologist thought she must have fluid in her ears...at 10 days it was confirmed that she had a hearing loss.
we were dealing with the trauma of having a deaf child when we took her in to her pediatrician (bruce kautz) at 2 months old who was uncomfortable with her head size...she had not gained much weight so he told me to take her off the breast and put her onto formula to "fatten her up"..."her head should grow as well", he said.
at 4 months her head had not grown AT ALL! he ordered an MRI of her brain...during the MRI I stood next to the tech and said "wouldn't that just be horrible to find out something AWFUL at one of these things?"...he looked at me calmly and said "you will need to speak with your doctor"...in hindsight I am sure he saw the computer screen image of her brain...rather the lack of...and chose to offer his professionalism...to a mom who had no idea what the years ahead would hold.
aaron and I hardly talked about the MRI because we were not worried..."no news is good news"...is what we heard...the MRI was on a wednesday and by the weekend we had not heard a word. monday morning we BOTH woke up anxious...I called dr. kautz office 6 times, apologizing for my persistence..."its just that my husband and I both woke up anxious about these MRI results"..."you should be" he replied with hesitance..."I need to see you all in my office at 4:30 today to talk about your daughters future".
terror, shock, disbelief, fright, agony & a pain I hope I never feel again, ever.
"you must have the wrong results, are you sure the name was HADLEY MCHUGH?!"
I was folding laundry- aarons white t-shirts to be exact...I threw myself onto a futon couch we had in our unfinished basement...and wailed a cry I did not know I was capable of...my stomach in gut wrenching knots...called aaron at work screaming into the phone "ITS HER BRAIN, HER BRAIN!!!"
dr. kautz had the right results...we drove in silence into his office...young parents who, at the time, did not understand depression, anxiety, deep pain, trauma...we had no idea what the years would hold.
with tears in his eyes he told us the news...he painted the worst case & best case scenarios...grateful he did...as her life is the "worst case"...
over the years haddie has been a part of:
PT, OT & speech...is still in PT each week (at our house)
surgeries (g-tube, nissen fundoplication, g tube replacement)
e.r. visits
blindness
deafness
seizures
g tubes
diapers
meds & more meds
wheelchairs
needles
EEG's
broken bones (femur X3 & tibia once)
overdoses (due to pharmacy & nurse errors)
music therpay
vision therpay
eye patches
orthotics(braces for feet, hands, etc)
and so much more...
our life is FULL...beautiful & hard all mixed into one...
to date...haddie is now on oxygen at night and often during the day as well...she has severe osteopenia (beginnings of osteoporosis) but we have just discovered that her growth hormone level is super deficient so we will begin giving her injections everyday as soon as we learn how.
she weighs 84 lbs...she is heavy...its hard to change her diaper (her left hip is dislocated so her leg cannot be moved much)...her alarms (pulse ox & feeding pump) go off during the night or a good nap...its frustrating to hear them...I even hear them when she is not around...
im tired of driving a wheelchair van...partially because it is noisy (due to the ramp) and partially because of what it represents...
every day looks different for us. some days she is just bright and content...others she does not breathe well and seems like she is headed home...
haddie is about like a 2 month old baby for the most part. we do believe that she can see, he ar and understand far more than we are aware of. she knows us, for sure.
averi & holden are very much a part of her life...they love her dearly and also find joy in the times she stays at home and we travel with out her...they know she may die as a little girl & obviously have mixed feelings on it all.
when we have chatted with them individually about the realities of her life their responses were:
"can I have her clothes?"~averi (age 7)
"yeah, I get it...but I mean, she will be in HEAVEN"~holden (age 12)
as for mom & dad...we ride a constant roller-coaster...hoping for her to dance in heaven & not to "suffer" anymore...to be rid of all of her tubes & to walk and talk AND the trauma that comes with loosing her...we won't be able to smell her anymore...to kiss under hear earlobes...to pat her diaper-butt...to hear her noises...see her crack of a smile...hear her snorts...