When we were first given Finn's diagnosis, I remember leaving the parking lot and forgetting the whole file worth of stuff on the top of the van. When I stopped to pay the parking ticket, I saw all the papers blowing everywhere and I completely lost it and starting sobbing. People starting getting out of their cars and helping gather papers and the person in the ticket booth came out and helped me and then waived me through.
I remember thinking I couldn't breathe and I would never be able to breathe again.
With each failed drug, her outlook became worse and my anxiety became higher. I remember sobbing because of all the things they told us she would never do.
Add to that her autism diagnosis
Then her failure to gain weight and constant hospitalizations
2 times they told us she was going to die
once she wasn't even stable enough to air lift to the hospital they wanted to get her too so we had to sign papers saying we were OK with her being treated where she was because they couldn't let us on the helicopter with her and the paramedics told us that they didn't think she would last the trip...
to sign a paper saying that it was OK to treat her because I didn't want her to die alone without me
then there was the emergency g-tube surgery...while she had a fever and was horrible sick, crash carts outside our room...because her throat was closing and her veins were blowing
....................................
and yet
because of her
I have learned to cherish each small thing I took so for granted with the boys
each tiny step each messy spot each strewn toy each laugh each frown each tiny inchstone met
in some ways she is the typical 3 year old...squealing with laughter when she is tickled and loving playing with her puzzles and sometimes I almost am lulled into thinking that everything is perfectly
and
then I am reminded
with a stumble or a fall or a seizure or a med check or a autistic meltdown or a sensory need or a call from her dr, just checking in that everything is perfect
perfectly Finn
and while I would give anything to have her not suffer and be healthy and her mind not deal with 100s of lightening storms
I would never give up the knowledge that she has gifted our whole family with
