Genetics Appt at Stanford..

Hi Jenn,
You are indeed a strong and capable Mom.  Celebrate this Mother's Day knowing there are so many here who think you are an exceptional example of a Mother.  Joey is so blessed that he was sent to you.  I say this thinking of a night when I was working labor and delivery and my pastor and his wife came in.  She was in labor and they were expecting a special needs child.  When Sarah was born, she was indeed, special needs.  So many things wrong to prevent her from a normal life.  Pastor stood at the nursery window with me and looked at his new daughter.  I have never forgotten what he said, "God must trust us so much to send us this special child. "  He went on to say how easy it was to raise his other four children, but God must really trust him to think he could care for Sarah.  God must really trust you, and have confidence in your ability, to mother Joey.  I hope Mother's Day is really, really special.

I do have a suggestion....when my husband had his second brain tumor, we took a small recording device with us to appointments.  We could not remember everything they told us.  It was easier at home to listen again and take more information from it.  Perhaps when you go to those marathon appointments this would be helpful?

I'm hugging you and Joey, can you feel it?
Mary

Oh, the postscript.....
Years later I visited with Pastor.  We had moved away and I had not seen him.  I went to see them especially to see Sarah.  Well, Sarah was out playing, down the street with a neighbor child.  The child that wasn't suppose to speak, was shouting and playing at the top of her lungs.  The child that couldn't walk, ever, was running.  The child that could not learn, was learning, a bit behind her peers, but learning.  The child that was suppose to succeed......more than succeeded, she won!!!

Dear Jenn,

Sending good thoughts and prayers to you and your family!

~Naomi

Jenn, Sweetie, all I am going to say at this time is I am sending my love,and support. If you need anything you know I am heere foryou.

HUGS
JOY

Jenn,

I am a mom who has a houseload of specail needs children.  So know first off that you are not alone.  You will stay in my prayers.  The best advice I could give you would be once you have a diagnosis join a support group.  Be with people that are going through what you are going through.  2nd would be to fight like a dog when it comes to your school district and 3rd make sure you take time for you.  # 3 is actually the most important of all of them.  If you let yourself run down you will be worthless to the chidlren, your husband and yourself.  Re-charge.  Bargin with other mothers to take care of eachothers children, do what ever it takes to get a break.  I take as many breaks as I can.  It is what keeps you fresh and going and focused.  It is so easy to get caught up in the drama of all the doctors therapists etc.  So try not to do that.  That is going to be hard.  I also never believe it is as bad as some of the doctors tell you.  My Sean, they told me would be a vegtable and never even learn to walk or read or anything.  He is now the best reader in his first grade class and is reading at over a 5th grade level.  He is also the fastest runner in his class and is perfect.  My Lexie is genetically perfect even though at 5 she is the size of a 2 year old.  She was a huge mess when she was born and now is doing everything she should at her age plus more.  One never knows.  Keep high expectations for your children and they will live up to them.  Continue to raise the bar for them so they keep striving.  Reward postive things and ignore the bad.  Hug them every moment you can.  Catch them doing something right.  You soulnd like you are doing a great job already.  I wish you the best and hang in there what is to be will be.

Rhonda

{{{Jenn}}}

Hi  Jenn,

You are on the right track and doing the best things you can do for yourself and your sweeties.  Research, good medical care, sharing and seeking support are all HUGE tools to finding out what the kids' issues are and to learning how to work with/past those issues. 

My older two sons both have their own challenges (one we believe has Aspergers syndrome, though not officially diagnosed, and the other has a confirmed visual/perceptual learning disorder).  The first son is working full-time and going back to college part time and is happily celebrating a year with his awesome girlfriend.  The other son just graduated from college a couple weeks ago and will be getting his teaching credentials in the next year.  It has been a long, and often frustrating road with doctors, school officials, etc. - but it has been so worth it and we are all so proud and grateful for where all our effort has brought these amazing young men.

As scary as it is to find out that your child(ren) have a challenge like those you describe - be careful not to let yourself get stuck in the worst case scenarios.  Be honest with yourself about them, then decide that that isn't going to happen to your babies.  Your continuing positive and determined attitude will work wonders for them, the rest of your family and for your own peace of mind.  It will still be scary sometimes, but you and your kids can learn/adjust/cope with whatever this is and thrive.  You are a strong and nurturing mom, with two great kids - you are all going to thrive despite this mountain you have to climb.  Go forth and kick a** Momma!!!!  We are praying and thinking of you all.

Cathy C.

Hi Jenn,

Wow you have a lot on your plate.  I will be keeping you and your family in my prayers.  Thank you for keeping us updated.  If it is Russell Silver Syndrome, I am so glad to hear that it won't shorten his life span.  That alone has to be reassuring.  


Hugs,
Linda