Stressing out - hugs needed

[lorrie]

Hi all,
You're probably all fed up with me getting totally stressed by now so don't read this if you can't bear me ranting on any more.
We're still waiting for a date - still all they'll tell me is that Genevieve is at the top of the list and they'll slot her in as soon as possible. i wouldn't mind so much if they gave us a date a little while in the future just so we had something to plan round. At the moment it's like our whole lives are on hold and I'm just going crazy. I actually had a panic attack in the supermarket on Saturday - something that's never happened to me before.

I have finally got Genevieve started on some Diazepam at night but the directions we got from our GP bear no resemblance to what our paediatrician said in February (yep - it's really taken that long). In the absence of any coherent instructions I've had to make it up as I go along and I really don't like doing that with something like Diazepam. The idea was to relieve spasm in her legs which get very stiff over night so I'm giving her 1mg at night and watching for any signs that it's amking her drowsy in the mornings. All being well - and in the absence of any instructions to the contrary - I'll put that up to 2mg after a week.

Genevieve's twin sister starts her AS levels next week and I've just discovered she's behind with some work that she needs to get handed in. She hasn't mentioned that she's having problems 'cos Mum's got enough to worry about. I don't know how many times we seem to have had the same conversation about that. Nothing I say seems to convince her that she's just as important as her sister and that her Dad and I are always willing to help.

It just feels like the last straw. I've been trying to pray about it all but at present I feel more like throwing crockery across the room at God than talking to Him!

Thanks for letting me rant on girls.

Lorrie

[Lura]

Lorrie,

I am sending MAJOR HUGS your way!!!!! Don't ever apologize for venting, that's what this is for, and why we are here! It has to be frustrating for you, others are getting surgeries out of the way and you are in limbo. I often wonder why the medical profession lacks the ability to see the stress that parents are under when faced with surgery for their children with special needs. I am not in any way diminshing the stress parents of children without these special needs have, but we have an added dimension. I will start praying extra hard that you get a date!

As far as your other daughter goes, I don't know how parents go about finding a balance for them. I always wanted more children, but I think I am grateful that God didn't bless me with them because I focus so much on Alex. I am sure I would have figured it out, but it's less stressful this way (in some ways). I do worry about who will care for Alex when I am gone, but try not to borrow trouble! She'll be okay, she knows you love her, and the wait is probably stressful for her too!

Give yourself a break when you need it, Genevieve needs her mom in tip top shape!! Know that I am here and that I care about you very much!!

Lura

[nikyergen]

Lorrie,
Here are lots of HUGS AND PRAYERS for you. It is hard enough to deal with the scoli problem, but then you have an added difficulty I didn't have. Right now is a time in your life you want to control something God has to control. That is so hard to do. It is the hardest thing we have to do is let God control it.

I understand the part of the other child, but I have two other children. I still hear lots of complaints about household and ranch chores and that Crystal can't help. Craig and I are working hard at remedying that problem. Our kids do the same thing with Mom and/or Dad have enough to deal with. I have gotten into the habit to ask the other two girls several times in the evening about their day, what school work they did, did they get in to see a teacher they needed help from, are they passing all of their classes, etc.

Remember to do our stress relief - you know the bubble bath, favorite beverage, etc. Mom and dad need some time to relax a little, even if it is for only a few minutes.

Lots of love, hugs, and prayers are coming your way.

'til later,
Nikki

[nicoles mom]

Lorrie
Rant Away
Take Care Of Yourself Genevieve Is Going To Need Her Mum
And Keep Praying God Will Only Give You As Much As You Could Handle. With Genevieves Handicap And Scoliosis I Could Only Imagine What You Are Going Through. Trust Me I Know This. My Nicole Doesn't Have Any Other Problems Except The Scoliosis And That Was Enough For Me To Handle This Time In My Life.
So Know I'm Going To Tell You A Story Very Sad But True. When I Was 4 Months Pregent With My Nicole I Found Out I Had Cancer. The Doctors Told Me To Save My Life You Must Abort This Pregenancy. I Hated God So Bad How Could He Do This To Us. My Husband And I Wanted A Baby So Bad. Well To Make A Long Story Short. I Didn't Abort Had My Little Miracle Baby Nicole. Went For Chem-o And Then A Bone Marrow Transplant. It Took About Four Years To Complete This Bout With Cancer Treatments And My Husband Was A Mess. I Came Close To Death More Times Then I Wish To Remember. As I Sat In The Recovery Room Were Nicole Laid After Surgery I Realize After All The Years That Had Gone By. That God Have Not Taken Me Then. So I Could Be Here For My Nicole Today. So Keep Praying Because Here Heards You. I Will Pray For You Genevieve And Your Family.

This Is For You
Xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox
Oxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Theresa

[Lura]

Theresa,

Oh my goodness!!!!! God truly has a purpose for your life! I am greatful to have had this opportunity to become aquainted with you, maybe communicating with this group was a special mission for you! Your story made me cry!!! Thank God Nicole had you to go through this with her!

Lura

[nikyergen]

Theresa,
I know the cancer thing quite well. I was diagnosed with cancer at my 6 week check up after having my last baby. The doctor gave me two choices. One was to wait and keep a very close eye on it or have it removed. I told the doctor I wanted to see my girls graduate from high school and walk down the isle when they get married. That meant in my mind there was only one choice and it was surgery. I am glad I did it. So, I understand that God didn't take you away from your daughter. I am proud to say I have been cancer free for 12 years now.

Isn't it scary to find out the things we have learned about each other. I am so thankful I have the husband I have and God. I don't know if I could of survived cancer and Crystal's surgery without him and God.

God Bless you all.

'til later,
Nikki

[KRIS ATKINSON]

I am anxiously awaiting a surgery date too. Called Shriners yesterday. They were really nice about my anxiety and gave an estimate of July/August sometime. First week July is already booked. One high need surgery got put in the waiting list before my daughter, who is high need. They also said the chart said my daughter needs posterior and bossible anterior surgery. Now that confirms that the doctor is considering the possiblilty of anterior also, not definitely doing it. They said they will probably know my date about 5-6 weeks in advance, and I requested a phone call when they know. They were glad to accept that request! I had thought they would just mail it, and was afraid to push for a phone call. Now I feel a little better about the communication, at least. Kris

[Karen Ocker]

waiting for surgery

Waiting a little longer might be a blessing in disguise. In July all the new doctors come on board. It takes them a couple of weeks to get oriented to the new facility.
Karen

[Carmell]

Sending my best cyber hugs too! I'd be more worried about you if you DIDN'T have stress and worry about the pending surgery. You probably don't like hearing that your emotions are very normal/typical, but its true. You are doing a great job! Keep up the good work. Every parent here has been in similar shoes (at one point or another) so you are in good company!

[lorrie]

Hi all,
Thanks so much for all you good wishes and hugs. Feeling better tonight - no good reason, just am (might be the red wine!).
Theresa and Nikki, what bad times you've had - I wish you good times and thank you both for telling us about them.
Love to all of you
Lorrie

[nikyergen]

Lorrie,
I guess I look at it as an obstacle I had to overcome. I had a family to get raised and I couldn't do it being sick with cancer. God won't give us anything we can't handle. And that was just one of those things.

I am glad you are feeling better (even if it is the red wine), at least you relaxed a little.

Have a nice evening.

God Bless You All!

'til later,
Nikki

[nicoles mom]

Lorrie
So Glad To Hear Your Doing Better Today. Red Wine Is Good For You I Have A Glass Everynight Just One. Hope My Story Gave You Strength. I Wanted To Ask You For A While How Far Away Do You Live From Wymondham, Watton, Dereham, Norfolk. This Is Were My Family Lives. My Mum Is From The Uk She Came Here To The Us After Meeting My Dad He Was In The Airforce. My Auntie And Uncle Were Just Here For 2 Weeks. They Live In Martinburry St Edmumds Suffolk. I Was Thinking About Taking Nicole Over She Has Never Been. Her Great Nana Would Love To Meet Her.
Theresa
Xoxoxoxoxo
Oxoxoxocox