a blessing today

[Guest guest]

In so many ways, you guys. You all know how many questions I have had

about starting this, and you guys are awesome about answering my

neverending questions. But, I still dont know you or see you, and

while we are emotionally on the same page, I felt like I wanted to

meet someone who had been thru this.

and whaddya know? I went to the school social workers office today to

discuss some details about the fundraiser for the teacher whose son

has cancer that we are heading up. I asked her if she knew if Kindra

was still in Ann Arbor, b/c if she was down there, I would try to

meet up with her this month during our appts. and the kids first

infusions. ( I forget sometimes that not eveyrone knows what is going

on in my little world)LOL and she asked what kind of infusions. So I

told her.......and mind you, she has worked at this school for a

couple of yrs, and is even Olivia's pom pon coach,and I NEVER would

have known this. But, she has lupus and has since childhood, first it

was misdiagnosed at JRA(and some freakishly familiar issues to

savannah went on with that) so I guess at some point, or maybe even

now, IVIG was used as treatment for lupus. She lives downstate and

actually went to the same infusion room as my kids will be going to,

same hospital and everything.......even wondered about the kids drs,

said she probably knows them too!!she spent her whole life sick and in

pain(and ooh, she said her first symptoms were these horrifying leg

pains that nothing helped!!)and that her mom was an RN, and though her

bloodwork came back " ok " , she had every symptom of lupus, so her mom

kept pushing, finally found some good drs, who did dx her and started

her on IVIG. She does not feel scarred. She does not feel messed up.

She does not resent her parents and in fact feels like they saved her

life. She told me that she has spent so much time on prednisone, its

causing her some other problems now, but if she never had the benefit

of prednisone,she wouldnt be here today. She asked me my main concerns

for a quick minute, and I told her I was a leeeetle bit worried about

a port.........she patted her chest and said,best decision I ever

made. NO problems at all. I LOVE MY PORT. I told her savannah is kinda

freaking out about it,and she offered to talk with her and tell her

her own experience with it, and the drs and all that.

I know it should not come as a shock to me that she is so normal. My

own kids had troubles even getting help at first b/c they looked so

healthy. I guess its just the fact that I have known her for some

time, she has been my kids coach, and I never would have guessed that

she had any health problems, let alone somethign of this magnitude.

But, it gives me such hope. it really uplifted my day, just to know

that my kids have the chance, mainly due to what treatments they are

being offered, to have a life like this. They can grow, realize their

dreams, have a " normal " life, while still having this illness. they

really can be regular.

She said to me, " never take what you are doing for granted. CAring for

a chronically sick child is a full time job, I remember watching what

my mom did for me, to keep me safe, to help me be the person I am now,

andI am so grateful. I love my parents for what they did for me. "

It just gave me such peace. It was a blessing in my day, so I thought

I would share it.

valarie

mom to

olivia, asthma, allergies,GERD

savannah,asthma, allergies, cvid

donovan,asthma, allergies, low iga and igm, TBM

brennan,asthma,allergies, hypogamm, TBLM