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Coping with a recent diagnosis.. Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
28th Jul '12

My daughter was recently diganosed with a chromosome disorder..
& im still "grieving" .. not in the way of someone passing..
But I'm having a hard time some days coming to grips with the hardships she will face and has faced...



I feel overwhelmed.. and lost.
I'm afraid of losing her.. I'm afraid of the unknown.



Theyre still researching her syndrome and dont know much about it but know the basics..
They dont have a life span for children with the syndrome because each child that has died all have been of something different.. there's no pinpoint on the causes of death on some.



How do you deal with the coping process.. and coming to grasps with reality. or will it never happen for me?



We went to the annual 1p36DSA conference today and met so many families there with the same syndrome but all were different..
the children with large chromosomal deletions couldnt walk,talk, and had g-tubes.
The ones with micro deletions like Isabels mainly had medical issues.. heart transplants..surgeries.. and death...

Maegan(FAKER)'s 2 kids; Tucson, Arizona 5332 posts
28th Jul '12

I have never been in your situation. Just enjoy every moment you have with her don't take a second for granted. There are miracles and I pray for your babygirl. Have you looked into support groups for parents going through the same thing?

Zach&Evan&Jacob'sMom 3 kids; 7 angel babies; Fall Branch, Tennessee 48614 posts
28th Jul '12

I am so sorry, Heather. I knew that this had to be so hard on your heart, mind and body :( My heart aches for you and Isabel. It truly does. My prayers are always with yall. Always.

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
28th Jul '12
Quoting Maegan(FAKER)'s:" I have never been in your situation. Just enjoy every moment you have with her don't take a second for ... [snip!] ... There are miracles and I pray for your babygirl. Have you looked into support groups for parents going through the same thing?"


Yeah thats how I learned about the conference.
Ive been talking with them since June 17th the day after final diagnosis but it doesnt seem to help much.

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
28th Jul '12
Quoting Zach&Evan'sMom:" I am so sorry, Heather. I knew that this had to be so hard on your heart, mind and body :( My heart aches for you and Isabel. It truly does. My prayers are always with yall. Always."



It is Amanda.. & I have to let it out alone..
I feel so alone..
Jordan doesnt feel upset about it. I wish I could be like him and say it is what it is.
But hes not the one who sat with her in the hospital for 3 weeks and who has done everything with her medically..
I had to watch her suffer.. and its just so hard.
I feel numb..
I never thought I'd ever be in a situation like this ever.
I thank God for her everyday.. she's such an angel. I just love her to death and dont want her to be treated differently..
But with society they do.



I've had people crush my hopes already for Isabel to lead a normal life by telling me she will never get married and she will never have kids.
I just.. I dont know..
I'm taking it hard again tonight after that conference.. seeing all the kids.. was just heartbreaking. Why do they have to suffer when theyve done nothing wrong.. you know?

Zach&Evan&Jacob'sMom 3 kids; 7 angel babies; Fall Branch, Tennessee 48614 posts
29th Jul '12
Quoting Heather[AJB]+1 DIVA:" It is Amanda.. & I have to let it out alone.. I feel so alone.. Jordan doesnt feel upset about ... [snip!] ... seeing all the kids.. was just heartbreaking. Why do they have to suffer when theyve done nothing wrong.. you know?"


That had me in tears. Never let anyone tell you that Isabel can't do something. Ever. You never know! She already seems like a fighter. Can you just imagine as she gets older?? Plus she will see how strong you, her momma, is. She will be fine.



You need to try and let it out. Somehow. I wish I could tell you how to feel better :(

☮live Due January 23; 2 kids; Nampa, Idaho 14721 posts
29th Jul '12

I am so incredibly sorry for her diagnosis. She is an absolute beauty and I send all of my love and prayers to you guys!!!

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
29th Jul '12
Quoting Zach&Evan'sMom:" That had me in tears. Never let anyone tell you that Isabel can't do something. Ever. You never know! ... [snip!] ... you, her momma, is. She will be fine. You need to try and let it out. Somehow. I wish I could tell you how to feel better :("


I'm pretty much just sobbing right now..
Thats the only way I can let it out..



I know she has it in her.. & I'm praying and believing one day I'll be able to pay for her wedding.. help plan her wedding.. etc etc.
I really really hope we get to see that day.



It';s so frustrating knowing all the statistics say otherwise.

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
29th Jul '12
Quoting ☮live:" I am so incredibly sorry for her diagnosis. She is an absolute beauty and I send all of my love and prayers to you guys!!!"


Thank you.
Prayers are the best

Zach&Evan&Jacob'sMom 3 kids; 7 angel babies; Fall Branch, Tennessee 48614 posts
29th Jul '12
Quoting Heather[AJB]+1 DIVA:" I'm pretty much just sobbing right now.. Thats the only way I can let it out.. I know she has it in ... [snip!] ... wedding.. etc etc. I really really hope we get to see that day. It';s so frustrating knowing all the statistics say otherwise."

Isabel could prove everything wrong. You have to pray and believe. I am always here for support.

Samilee 3 kids; Greeneville, Tennessee 4900 posts
29th Jul '12

I'm so sorry you and your family are having to go through this!! Continued prayers for your beautiful little girl!

☮live Due January 23; 2 kids; Nampa, Idaho 14721 posts
29th Jul '12
Quoting Heather[AJB]+1 DIVA:" I'm pretty much just sobbing right now.. Thats the only way I can let it out.. I know she has it in ... [snip!] ... wedding.. etc etc. I really really hope we get to see that day. It';s so frustrating knowing all the statistics say otherwise."


Now I'm in tears too! I hope to God that those damned statistics just fade into the back of your mind when she succeeds at everything everyone said she wouldnt. She can and I believe she will!! We all have to believe that. She is so lucky to have such a wonderful mother...I'm sure you hear all the time how strong you are, but just know that we are here for you when you dont want to pretend not to be scared or hurt or all those other feelings I'm sure you're going through. Hang in there! HUGS!

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
29th Jul '12
Quoting Zach&Evan'sMom:" Isabel could prove everything wrong. You have to pray and believe. I am always here for support."



Thanks so much Amanda. You've always been a great friend.
We need to get together again soon. we live too close not to. lol

Heather[AJB]+1 DIVA 4 kids; Kingsport, Tennessee 9678 posts
29th Jul '12
Quoting Samilee:" I'm so sorry you and your family are having to go through this!! Continued prayers for your beautiful little girl!"


thank you so much for prayers.

Samilee 3 kids; Greeneville, Tennessee 4900 posts
29th Jul '12
Quoting Heather[AJB]+1 DIVA:" thank you so much for prayers."

Anytime ♥♥♥