Thursday, January 19, 2006


I got this today from my CHARGE email group, it's perfect! So many of them I already relate to...yikes! :)

You know you have a child with special needs when...
  • You compare ER's instead of grocery stores.
  • You compare your child's oxygen saturations.
  • You view toys as "therapy.'
  • You don't take a new day for granted.
  • You teach your child HOW to pull things out of the cupboard, off the bookcases, and that feeding the dog from the table is fun.
  • The clothes your infant wore last fall still fit her this fall.
  • Everything is an educational opportunity instead of just having plain old fun.
  • You cheer instead of scold when they blow bubbles in their juice while sitting at the dinner table (that's speech therapy), smear ketchup all over their high chair (that's OT), or throw their toys (that's PT).
  • You also don't mind if your child goes through the house tooting a tin whistle.
  • You fired at least 3 pediatricians and can teach your family doctor a thing or two.
  • You can name at least 3 genes on chromosome 21. (You really know your toast if you can spell the full names correctly)
  • You have been told you are "in denial" by at least 3 medical ortherapy professionals. This makes you laugh!
  • You have that incredible sinking feeling that you've forgotten SOMETHING on those few days that you don't have some sort of appointment somewhere!
  • You get irritated when friends with healthy kids complain about ONE sleepless night when they're child is ill!
  • Your vocabulary consists of all the letters OT, PT,CP, ASD, VSD,IFSP, etc.
  • You keep your appointment with the specialist even though a tropical storm is raging because you just want to get this one over waited 8 months to get it.....and besides, no one else will be there!
  • Fighting and wrestling with siblings is considered PT.
  • Speech therapy occurs in the tub with a sibling.
  • When potty training is complete, you take out a full-page public notice in the Washington Post.
  • When the Doctors/Specialist/Hospitals etc. all know you by your name without referring to your chart.
  • You keep a daily growth chart.
  • You calculate monthly statistics for the number of times your child vomits, and did this for more then one year.
  • You phone all your friends when your child sits up for the first time, at age two.
  • With a big smile on your face you tell a stranger that your four year old just started walking last week.
  • Her medical file is two inches and growing.
  • You have a new belief.....that angels live with us on earth.


During Max's hospital stay, we had many inspiring signs and quotes around his room. I was unpacking his plethora of "stuff" from the hospital this morning and came across two of my favorites...

Before you were conceived, I wanted you.
Before you were born, I loved you.
Before you were here an hour, I would die for you.
This is the miracle of life.

And this was a card from the wonderful TOM girls! The message couldn't be any more perfect.

Your son is here not by chance,
but by God's choosing.
His hand formed him
and made him the person he is.
God compares him to no one else -
he is one of a kind.
Your son will lack nothing
that God's grace can't give him,
God has allowed your son to be here
at this time in history
to fulfill His special purpose
for this generation.

Wednesday, January 18, 2006


Tonight my cousin Jackson looked at one of my framed photos on the bookshelf and said, "I could just eat you up Maxwell!" How funny is that!?! A three year old pretty much was mocking my mommy because she is always talking about how cute and yummy delicious I am. It was very funny! :)
Speaking of YUMMY, wait until you see these photos! ENJOY! Love, MIGHTY MAX
No seriously, could I be ANY cuter?

Yummy...this feeding tube is delicious!
(Max has decided that his tubes and wires are super fun toys. Last night in the bath, he found his Gtube and keeps pulling on it and bringing it to his mouth. VERY cute, but won't be good if he pulls it out! HOW SUPER CUTE IS HE IN HIS LIL' BATHTUB???)

Hello everyone! I am finally learning to enjoy toys...slowly but surely. Mom just giggles when she sees me reach for this ball. :)

Mom is finally getting a hang out of making me "mobile" through the house. On the right is my oximeter...on the left is my feeding pump...and I have a 50 foot tube that connects to my gigantic oxygen tank. Yes, it requires some extra time to move around and sometimes that can be a bit stressful...but we are really trying to make the best out of the situation! :) This day Mommy really needed to do some work (bills, equipment orders, etc.) so she moved me into her office...but I was being so cute (and my monitor kept going off too...oops!) that she was quite distracted!

I wish I may, I wish I might...have this wish I wish tonight!
(Doesn't Maxwell look so angelic in this photo? And it looks like he is praying. I LOVE this photo! This is sooo him...he just adores playing with his hands.)


Maxwell had his weekly doctor's appointment today (vaccinations, weight/height, overall exam, med/diet changes, etc.) and all is STABLE...that wonderful, magical word. We are stunned that he has managed to stay healthy (well, for the most part) enough to stay out of the hospital. We are doing everything possible to ensure this trend continues...he is being safeguarded like the precious, invaluable jewel that he is!

He simply amazes me every day. The doctor was teasing me today that every time he steps back into the room, Max and I are always googly eye for each other. I absolutely LOVE to smother him with kisses...and Max shows me his appreciation with a big ol' smile! Oh, I could just eat him up!!! He is soooo YUMMY delicious...and man oh man, when he smiles at you, WOW...I can't even put the joy into words!

It's almost time for Max's meds...I must run. Tonight we don't have a nurse so it will be an all nighter...hopefully uneventful! :) And then first thing in the morning I have a call with my divorce attorney to prepare for the temporary hearing next week. All night no sleep, then dealing with the divorce stuff...yikes!

Hope all is well with everyone...Max sends thanks for all the amazing prayers. We feel incredibly loved and supported by our friends, family AND many, many complete strangers! We have received numerous anonymous gifts and cards in the mail (which simply make our day!)...and Eliz is stopped frequently in public being asked how her baby (Max) is doing. Apparently a lot of people read the newspaper feature on Max and people assume she is me! Pretty funny! Lots of love here in Bellingham for Mighty Max! We are so excited for the day when Max is healthy and strong so he can meet more of his fans!!! :)