Happy B-day to Mitch! (10 next week)

[Guest guest]

I noticed your little note at the bottom of the message and that Mitch

is turning 10 next week! Make sure to tell him a big Happy Birthday from

our group. Hope he has a wonderful day!

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency...

Luke (16)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4),

Marquis (3) Likely FAS, behavioral issues, SID...

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, possible arachnoid cyst, 100% G-tube, GERD,

immobile, left hemiplegia...

(15 months) SID, dev. delays, right hemiparesis issues...

Re: Do you ever feel alone ?

> ,

>

> I am a long ways from you, but feel very close to you in my heart right

> now.

> There are many MANY days when i feel completely alone, like i'm the Lone

> Ranger. I often feel like i am fighting the mito battle for my kids when

> no one

> else here " gets it " . Even my docs, whom i love, don't really understand

> mito

> and they surely don't comprehend the life/death decisions that we as mito

> moms

> and dads make on an every day basis. The specialists are in Denver here,

> and

> again i think they are great....but we see them once or twice a year. so

> again, we really are alone for many of the decisions.

>

> I would encourage you to keep trying to get your support group together.

> I

> have to tell you that our little group of online support here has been my

> life

> line many many many times. When i lived in So Cal, we had a great group

> out

> there, too...it was hard to go to the meetings, but when they were over i

> had

> the overwhelming sense of relief that there was truly a group of people

> who

> understood my anguish, my sadness, my fear of the unknown. They lived it

> too.

> It was horrible to have to belong to the group (not because of who they

> were

> but because of WHY we were there) but at the same time, it was such a

> relief

> that the group existed.

>

> Anyway, this is a long post and i'm sorry. Just know that i'm sending my

> love to you, and giving you a big cyber hug from Colorado where it's

> presently

> snowing like a banshee.

>

> ruth

> mom to Mitch (10 next week) and Lexi (7 yesterday--wow!) both mito

> affected

> and my treasures

>