My Daughter Is Terminally Ill

[Blondie]

Hello everyone.I am new here and suffering from anticipatory grief.My 18 year old daughter has a degenerative illness which is taking her mental and physical capabilities over time.She became symptomatic with early stages aged just 9 years old after her father died of the same illness when she was 10.We had split up when she was a baby.It is so heartbreaking as a parent being able to do nothing but watch this cruel disease take her bit by bit.Very draining and tiring to.

[Guest NancyL]

Oh Blondie, I'm so sorry to read your story. I don't even know what to say to help you through this time, but this is a very active site, and I'm sure others will check in to post encouragement. Yes, I'm sure this is very draining on you. Our son had large cell lymphoma when he was 15 & 16. He was my miracle for he has been in remission for many years, however I just lost my husband suddenly. I wish there was something I could say or do for you right now. Just know that I'm sending warm wishes your way. And also, when I get feeling overwhelmed, I repeat the serenity prayer - God grant me the serenity to accept the things I cannot change. Plus keep coming back here please, we'll stick together and help you. Nancy

[sunstreet]

Blondie,

I am so very sorry. My heart aches for you. Such a difficult journey to have to take. I don't have a lot of energy at present but I wanted you to know that I am just so sorry. I encourage you to keep coming here.

Blessings and Courage, Carol Ann

[MartyT]

My dear Blondie, I'm sure I speak for everyone here in saying that our collective heart goes out to you. Of course there is nothing we can do or say to change the outcome as you travel this long and difficult journey with your precious daughter, but we can and do pledge to walk beside you as you continue to work your way through. Here you will find yourself among some of the most caring, compassionate and loving people you'll ever hope to meet. I don't know what, if any, in-person support you have found in the course of your daughter's illness, but if you don't know where to look, we're more than willing to help you find whatever resources may be available to you. At the very least, I'm hoping you will find this article helpful: Coping As You Anticipate a Loss.

[Blondie]

Thankyou for your welcomes.I will pop in from time to time,promise

[Steven]

Hi Blondie,

I'm so sorry to read of your daughter's heartbreaking diagnosis. I hope you will continue to visit us here, share your feelings, and know that you have a place where you can let anything out.

Being a caregiver, while rewarding, is very taxing both emotionally and physically. If you're a reader (or listen to audiobooks), you might be interested in Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy.

There are many resources and advocacy groups that help those of us who are thrust into the role of caregiver, and I hope that there is help for you in the book as well as here.

Please don't do it alone--at the very least visit here to let us know how you are doing. ~ Steve

Edited January 18, 2011 by MartyT
Links inserted

[Blondie]

Thankyou all.

I know I haven't been on for awhile.I guess I am trying to find my way through this nightmare.I suspected she had started with Juvenile Huntingtons disease aged just 9.It was 6 long years of hospital visits plus tests and aged just 15 she had the blood test to confirm it.As it's usually an adult disease they don't test until 18 unless enough 'evidence' is provided why the child should test.So this heavy weight has been round my neck 9 whole years and it does not get any easier,if anything it gets harder.She gets worse and worse.I already miss conversations with her about anything and everything as her speech is very poor now.Mentally she is like a young child some days,then the young adult can kick in and she cries so hard as she knows what is happening to her.Just heartbreaking as I have no power to stop it.This awful disease has not even finished with her yet,worse to come.I'm scared.I have pictures of my blonde haired blue eyed little girl when she was healthy and it just tears me apart what has become of her future.It's like I am dying with her and I can see no end to this pain.

[sunshine]

Bondie hi I am so sorry to hear of your Daughter's illness. I have only 1 Daughter of my own and I just couln't imagine her getting that ill. So as one Mom to another I feel for you and your Daughter! I was a caregiver for my Mom for 2 years nd just lost her inseptember 2010. Caregiving is exasting! Emotionaly and physical, mentally!!! Do you have some one to help you once in awhile. I had hospice for Mom witch was a great help! Tell you yhe truth I couldn't have done it without them! They not only helped with Mom the helped all of us. When I was 18 my best friend died from cancer after 5 years of hell! I hope that God will be with you and your Daughter! Cherish the time you have and know your Daughter loves you for taking such good care of her. I will add you to my prayer list that agod won't let her suffer much longer! I'm sending you both Hugs!! Leave to the Lord and all your prayers will be answered! Keep the faith!!

[keyboardplayer]

I am praying for you and sending you a big bearhug.

[Guest Nicholas]

I only just came across this post and wanted to offer my sincerest sympathies. I lost both my parents at an early age to cancer and knowing there was nothing I could do was one of the worst feelings in the world. But those were parents, not a child. However, I also lost my darling son in December, so know roughly what you are going through. He had cirrhosis compounded by other things and was taken from me very quickly after being admitted to hospital, much more quickly than anyone could have envisaged.

Nothing I can write will take away the pain but knowing there are others in a similar position might help, albeit in a small way.

Nicholas

[Blondie]

Thanks guys,just to type my thoughts sometimes helps the pain.Sunshine thanks for the PM's.

Nicholas,I am sorry you have already lost your precious son and it shows your courage and strength in trying to help me with my grief.I really hope this place helps you.

We are to meet her favourite boyband before seeing them in concert on Wednesday.This is thanks to the Make-a-Wish Foundation.She is very excited and it is nice to see her smile again.Makes me smile to.It does make you realize though that this is only happening because she is dying,we would never meet such a famous UK group otherwise.However I intend to enjoy the day as much as possible.We will be picked up from home by limo and taken to lunch.Then she is to have her makeup done before being taken to the venue to meet Westlife,then to watch the concert.A precious memory which will hopefully give me comfort when I lose her one day.

[Blondie]

Growing up with JHD

Here is a slideshow of the time we have spent together so far.It was a hard one to make looking back at old photos before the illness took it's hold of her.

[Ron B.]

Hi Blondie. Good video! I noticed that in all the photos Rachael is smiling. Wow, what a positive attitude when facing one's own demise. I also learned about Huntington's disease, thank you. I hope you can post a few more words here; your voice, your words, and your video help us all. Welcome to Hospice of the Valley grief forums. - Ron B.

[Blondie]

Thankyou Ron.

Every year that goes by it gets harder and harder what to buy for her present wise.I ask her what she would like but nothing comes back.I wrote all her class mates Christmas cards out for her this year,she used to love doing that herself.Every year I wonder if this is her last.

[MartyT]

Blondie, dear, I just watched your touching video, and I thank you so much for sharing it here with all of us.

My heart is breaking for you ~ I simply cannot imagine how painful this must be, not only for your precious daughter, but for you as her loving mother. As a mom who's endured some painful things in my own life, I know first-hand that there is nothing more painful that seeing your own child suffer. How helpless you must feel at times. I am so very sorry.

I just finished reading an extraordinary book that made me think of you ~ written by a mother whose two (yes, two) daughters were born with Cystic Fibrosis: a true story of the power of love, the tragedy of loss, and the beauty and depths of the human spirit.

That mothers like yourself endure such sorrow and still manage to get up in the morning and carry on, putting one foot in front of the other, continuing to take care of your seriously ill child and the rest of your family, is amazing to me. You have my deepest respect and admiration ~ and we all continue to hold you and your family in gentle thought and prayer. ♥

[Blondie]

Thankyou Marty,I will take a look at the book.I also know families who have two or more kids with the same illness as my daughter. Unfortunately at the hospice my daughter goes to for respite one poor couple have FOUR sons with Battens Disease.One child is far too much pain for any parent to endure,but even four is unimaginable what that poor couple go through each day.

Christmas was hard as she barely noticed her presents and I opened them for her with her next to me.I so hate this illness with a passion.Why children are brought onto this earth to suffer so much is beyond me.

My husband went to the shop today just for a loaf of bread.He was gone sometime.When he came back he said he found he had done something he had not done in years.He went to our local church and just sat there.He didn't know why or whether it was right or wrong.We were both brought up C of E as kids but lost our faith along the road of life I guess and now only go to church for weddings or christenings ect.I have been thinking of going myself but I don't know if this is through anger or help?

Anyway no amount of praying can cure JHD.