Pauline, my deepest condolenses. Reading that your daughter passed away
made me cry so much. My daughter is about the same age (5 1/2 months)
with full Trisomy 13 and has congestive heart failure. Phoebe too has
been up about every hour every night for quite a long time. Although you
are in deep sorrow, it sounds to me that you are very strong and somehow
at peace. Many blessings to you and your family . --Stephanie Konik
On Mon, 20 Jan 2003 17:20:14 -0500 "Johnson" <jjohnson@xxxxxxxx> writes:
>
> Rachel passed from this earth into the arms of Jesus last Wed. at
> 12:15 pm.
>
> I had written this list and asked a lot of questions about her not
> sleeping,
> not comforting, crying all the time, all of which were completely
> out of
> character for her. In hindsight, I see that she had been putting
> all her
> being into staying alive. She must have had extra adrenaline
> flowing to
> enable her to fight so very hard to stay with us. That explains the
> staying
> awake, not comforting, and the crying, which was really more of a
> cry of
> exertion than suffering, I think.
>
> Many miracles happened the day of her passing to show me God's
> tender care!
> I will only share one right now. We had left the hospital after
> Rachel's
> birth under the care of Hospice. After her gastrostomy 3 months
> later we
> were unable to continue under Hospice. We all thought Rachel was
> going to
> be a long term survivor!!
>
> I had called our Hopsice nurse on Tues. for advice, as I had no idea
> how to
> help Rachel. He was going to come out on Wed. Wed. came and I put
> a
> vaporizer in with Rachel, hoping to relieve her discomfort. She
> then quit
> crying, became alert and content and went to sleep. I called our
> nurse back
> and told him not to bother coming (it was an hours drive). I said I
> thought
> Rachel was quickly coming out of whatever problem it was that she
> had,since
> I started the vapourizer. My nurse, David, said a new nurse had
> just joined
> their Hospice and she had had a Trisomy 18 baby that had died and
> that they
> would like to come and visit anyway. So they came. Rachel died a
> little
> while before they arrived at my door. They took care of everything!
> I was
> surprised at all the strangers that filled my house almost
> immediately after
> the neccessary call was made to the local police dept. Firemen,
> Sheriff,
> EMS, and several uniformed policemen. I can't say that I was totally
> gracious with them. They didn't really seem to be on my side. But
> continually the Hospice nurse explained that Rachel had died because
> of her
> condition. She explained it individually to the men at my house and
> also to
> mega people that those people called on their phones. Only my four
> year old
> daughter was home with me at the lime. My husband arrived in the
> middle of
> all the activity. Our four sons came home after everyone had left.
>
> We kept Rachel's body for 6 hours before the funeral home came to
> pick her
> up. We all held her and kissed her and said goodbye. It was very
> healthy.
> One of my sons asked why we were doing that, since her spirit was
> gone from
> her body. I explained that we had lived with and loved her in her
> body and
> we were naturally attatched to her body because of that, we were
> saying
> goodbye to her body.
>
> We had the funeral on Sat. It was beautiful. All our sons spoke a
> few
> words, I spoke more than a few and my husband finished our sharing
> time.
> Our pastor then gave a message, we had beautiful music and then we
> closed
> the casket after adding a few little treasures to be buried with
> Rachel.
>
> One thing that I will share with you that I learned through Rachel's
> time
> with us, is to live in the moment. I wish that I had done that more
> during
> Rachel's life. Too often I worried about how I would be able to
> handle life
> with so much to do. If I had known how short her life would be, I
> would
> have relaxed and enjoyed her more.
>
> I hope this is an encouragement to you. I feel sad because I miss
> Rachel
> very much. My life and hers were very entwined. I kept record of
> every
> bowel movement she had, every time she ate and how much and every
> detail of
> her life. I held her most of the time and loved being her mother.
> On the
> other hand, I see her now in heaven with a new and perfect body,
> playing
> with other children there and snuggling into the arms of Jesus. I
> see Him
> giving her a little squeeze just like we used to do. We always said
> she was
> squeezy because just being close to her made you want to hold her
> close and
> squeeze her. So I have great encouragement as well as deep sorrow
> for
> myself.
>
> Warmly,
>
> Pauline Johnson (wife of Jim, mother of Daniel 17, Stephen 15,
> Samuel 12,
> Joseph 10, Sarah 4 and Rachel full T-18 born July 23,2002-passed on
> Jan. 15,
> 2003)
>
>
>
> Building ___ooOOoo__ Rainbows
> www.trisomyonline.org
> Families Helping Families On-line
>
>
>
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line