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[sukie63]

helo, I am new here, we lost our daughter Rebecca 2 yrs ago, she was disabled and had Trisomy 18m,  she was not to live so long but we were thankful for every day we had with her and we miss her so much. the void she has left in our lives is huge........not only the loss of the child but our routines with her as she required total care. I am looking forward to talking with other parents.   I hooked up with bereved families of Ontario but find due to work I cant make it to many drop ins

Susan

[mamabets]

For sukie63~ With love and sadness in my heart, I welcome you here to Beyond Indigo. I am so sorry to hear of your loss. We all know what it is like to feel this agony, and we are like a family here, everyone here to help. My son Danny was 25 when he left this world, to travel on to where he now is, with all of his angel friends...They, too, have their family among the stars... They are all dancing among them, and brightening our darkest hours...

Here, the pain is unbearable...There, it isn't for them.. I believe this with all that I am, yet when the waves hit, I have a hard time catching my breath at times...

Please know that there are so many of us here that embrace you and will do all that we can to help as you travel on this journey with us. Beyond Indigo has carried me through so many lonely minutes, hours and days... As you "meet" all of us, you will see why~ There is a magic here...A magic that somehow connects all of us, and we feel that there must be a "place" where all of our kids must be together... Their spirits sustain us, their memories help to keep us strong~

LOVE

mamabets

[katos1]

Hi Susan

I'm not a parent but I had a brother die two months ago who had severe intellectual disability and autism - he died as a result of a seizure in a spa. He was 23 (I'm 22).

Obviously I can't understand what you've been through, but I can empathise with the difficulty that you've faced as a parent not only losing your child but supporting your child through her disability. My brother was very high needs, and I spent a lot of my childhood having to help care for him with my mum, as my dad was often away/not home.

In a way, maybe I've been grieving my whole life. I loved my brother, and I never would have changed who he was for the world. But when you have a sibling/child with a dissability, you feel loss for the things that they would never experience or that you can't share with them. My mum said she's devastated that she's lost my brother now, but she feels like she's been losing him his whole life. She says that part of having children is the vision/dreams you have for them. That you picture these great things for them. In reality, they never really happen - children rarely turn out to be what parents expect. But when a child is diagnosed with a disability, you lose the vision/dream so immediately, instead of gradually as you would with a child without a disability as they grow up. You lose the first day of school, wedding, graduation, etc in a matter of seconds as opposed to a lifetime.

I'm so sorry for your loss. Kate.

[lovekristy4ever]

Hi Susan,

I am so sorry for your loss.  We all understand your hurt and emptiness.  Our children do become part of our routines and we lose the loss of that routine only complicates things.  My daughter was 14 when she died and it has only been over three weeks.  She was a competitive softball player so we spend a lot of our time between practices, games, tournaments, private lessons, etc - 11 months out of the year.  Our family was our softball family and eventhough they call to support us we feel we lost them also.  Nothing can replace our children since they are our love and our life.  Greiving Rebecca is a long road but I'm sure it is difficult to find activities that would have normally been just taking care of her as well. 

I am so sorry.......hugs.

Terry

[gagesmommy]

Hi all,

So sorry to see all the new faces on here. I can understand what everyone is going through. I lost my 6 year old son in January. We just got his autopsy results back and they classified his death as natural and caused from a seizure. It was the best bad news we could have hoped for (he was in the bathtub and I had feared that he had drowned). I know that he is my angel in heaven now, but yesterday was so hard (mother's day) and I just want my angel back on earth. I kept myself busy by planting my garden. I'm sure that I'm going to have the saltiest potatoes around with the amount of crying I did while I worked. My 2 year old seemed to sense that I needed him yesterday and he stayed outside with me for 4 hours dropping potatoes into the holes that I had dug.

We are not mothers to disabled children anymore, we are mother's to angels. I can understand what you mean about having a disabled child and all your hopes and dreams fly out the windows, but at the same time you build new hopes and dreams for you child. I for the longest time dreamt that I would see my son be able to drink from a sippy cup while holding it himself and when that dream came true it was as good as if he had graduated highschool. We just redirect our meotions.  Love is truly a wonderful gift that way.

I know that they are all in a better place just smiling down on us telling us not to be sad for them, but to rejoice as they don't hurt anymore.

Jocelin

~No one ever said it would be easy, they said it would be worth it.     It definately was

[wyomingsal]

Gages Mommy,

I am so sad still that Gage isn't here with you but glad that it was a siezure and not from drowning.  Either way is horrible to be without Gage, but the relief from the wondering whether you may have inadvertantly caused this by leaving him for a few moments is wonderful.  I hope this new brings a little bit of peace to your hurting heart,

Sal

[eriksmom]

I have not visited this site for months and now that I do, I find others who lost loved ones who were disabled and died suddenly of seizures.  That's how we lost our son, Erik, about 17  months ago.  He was 22.  He had epilepsy all his life but we never dreamed he would die of a seizure.  They just don't tell you that.  But one day I went in to give him his pills and he was gone.  Like other parents, we have learned to bless each day we had Erik, because each day truly was a blessing.  Parents of special needs children have a special bond that transcends death.  I was worried about dying before Erik - who would take care of him?  What would become of him?  So, I guess I wanted to take care of Erik all his life  - and then I wanted him to die the day before I did.   Neat and tidy.  But it was not to be.  To those of you new to this journey - it will get better.  And someday, you will remember your child's life without remembering his/her death.  And that is a wonderful, wonderful feeling.  Bless you all.

Kathy