Today I am at an almost total loss for words. I sat down with my coffee & went to a good friends Caring Bridge page so I could catch up on how they where doing in New York. They have been there receiving treatments for various very serious medical issues of their children. But Miss. Mary their daughter is seeming to take the lead on this trip. They have been several times for all of their issues which I won't go into detail for fearing of totally messing it up! How their mom Lisa keeps it all straight it beyond me?? She is definitely a Warrior Mom among all of us with our special needs angels. Here is a link to the Mayo Clinic so you can read up on just some of whats going on with all of the eight children, Chiari Malformation. Now throw in a little juvenile diabetes,rheumatoid arthritis, & now the latest Cancer.
God blessed us when we rented our home here in Washington ten years ago by placing the family right next door! God knew I was going to need another Warrior Mom to help learn what to do with my Jeremy & how to draw on God when things looked their bleakest. She is an amazing example of strength, courage, & devotion I could ever hope to be one day. Mary plays piano like nobody's business! She cooks, draws, acts, she serves. She has most definitely been called to serve even though she lives her daily life in pain that only few can imagine. She is Jeremy's most favorite girl in the world! He always asks about her & gives her big hugs when he see her. So I ask that you just cover this special lady in prayer as she leans on her mom & God with this latest diagnosis. We know God has a plan for Mary even if we can't see it clearly. Pray that her parents know how they can help & for continued strength. They hope to be home soon from New York so they can head to Seattle's Children's Hospital to see how best to attack this latest medical diagnosis. So please pray that their doctors that God has given them are healing, strong,& confident on how to continue.
We love you Mary & the whole family. We hope we can be of help as you have helped us so many times.
1 comment:
I just read this and it's the middle of August. You are too kind...thank you. I kept up with some of the blog in NY but then things got too crazy. Now that we're back I am reading away about your exciting life :)
In NYC there is NOT ONE SINGLE country station can you believe that garbage?? So we were like,"Have ya heard of Kenny Chesney .....Hmmmmm???" Now you will. We put our CD's on our computer at Ronald McDonald House and blared it!! Too funny. Their faces were totally confused! A little Zac Brown, some Allison Krauss. Taught them a thing or two :)
We got some news last night...Mary does NOT HAVE CANCER !! The biopsy said with 92 % certainty that it was not. It had all the malignant markers but turned out to be benign!! We are still in shock and I don't think Mary can really believe it! All those prayers is my vote as to why! She was diagnosed with a Mitochondrial Disease yesterday though so more doctors etc.
Mary loves Jeremy too. A special bond for sure. I was out gardening and was remembering when you guys moved in and we met. Jeremy was only 4 months old and one of the big boys broke an arm I think! I miss you guys next door.
Anyway, thanks for blogging about Mary. It's been a long journey. She's trying to get her sea legs again after so much going on. Here's a list of the kids "stuff" in case you know someone who needs support....
* 2 with Type 1 diabetes on insulin pumps
and internal glucose monitoring systems
* 1 with a very rare metabolic disorder 3-
Beta-Ketothiolase Deficiency (KUD,
Ketone Utilization Disorder,BKT)-missing
link in a chain of amino acids without which
isoleucine cannot be processed. He cannot
process protein
* all 8 have Tethered Spinal Cords
* all 8 have Ehlers-Danlos Syndrome - a
connective tissue disease
* 6 have Chiari Malformations - a brain
malformation of the cerebellum
* all 8 have Tourette's Syndrome -a
"hiccup" in the brain
* 1 had a Stroke
* 1 has vascular fragility
* 2 with seizures
* 3 have osteo-arthritis
* 2 have a dilated aorta
* 1 has a bi-cuspid aortic valve - a deformed
valve in the heart
* 1 has had Supra Ventricular Tachycardia -
a heart arrythmia
* 1 has Left Ventricular Hypertrophy(a form
of cardiomyopathy) and very high blood
pressure with it.
* 4 have Dysautonomia - an inability to
regulate those functions we have no
control over such as heart rate,
temperature, blood pressure,digestion and
much more
* 1 had Serum Sickness
* 2 have had brain surgery
* 5 have had a de-tethering of the spinal cord
* 1 has a VP shunt for raised intracranial
pressure (pressure in the brain)
* 1 stops breathing asleep and awake
* 1 has Enthisitis Related Juvenile idiopathic
Arthritis
* Mitochondrial Disease
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