Coping At The End

I wrote the following to a mother who has asked for advice on

how to cope with the emotional strain of caring for a child in

the late stages of JHD in June 2000.

This is not so much as a difficult subject for me any more, as it is for someone who is going through this with their child as you are. First, you DO HAVE the most important thing to give.....LOVE. This does not come freely and not all people have it to give!!!

My heart and soul died several times every day in

the last few years of Kelly's care and especially the last

6 months of her life since she went downhill so very quickly.

To have to tell your child that it is okay to let go, if they want

to....that you'll be with them again one day...is THE hardest

thing any parent has to do. And yet, we must when the time

seems near.

We have to let them know how brave they are/have been, how

much they have contributed to your life and your joy & love.

How very very special they are and will NEVER be forgotten but

remembered always with respect and love. It is so important for

them to hear these things and to know that you will miss them

but you understand when they get too tired to fight any longer.

The first time I told this to Kelly, when she was burning up with

unexplained fevers and delirious seeing Angels and talking to her

Grandpa who had died a few months before, I wanted to die with

her. I seriously had thought if my child goes, she is going with

peace and I will travel with her. That had been in the back of my

mind for years. I would NOT let my child suffer.

How did I survive before she died? One day, when I once again

had to tell Kelly it was okay to let go, that God would not let her

suffer and both of our lives were in His hands, a great sense of

peace came over me. Then I realized what so many had said before

.....we cannot be superhuman and "fix" everything. There comes

a time when we all must give our lives over to a greater being and

trust His judgment that what happens was meant to for a good

reason. When I explained this great sense of relief to Kelly and

told her that from that day forward we were going to put our lives

in God's hands, as He knew what was best for us, she too smiled

and shook her head "yes".

The last week of her life I think I "knew" she was dying, and did not

want to accept this but in my heart did. I prayed, especially to the

Virgin Mary, that as one mother to another, I begged her to give my

child peace. To not let her suffer if she must be taken. This prayer

was said once again when sitting by Kelly's bedside a few minutes

before she died. When she stopped breathing, I had just stepped

out of the room for a second. Kelly knew if I was there I would have

done everything in my power to revive her, and this time she did not

want this. If you could have seen the biggest smile that had come

on her face in the moment she left, you would know the serene sense

of peace I felt knowing she had not struggled one second and actually

looked as if she had seen something or someone so beautiful, she

went gladly.

I wanted to die right then. I chastised myself so often for so many

months not being there in that second. I also knew in my heart Kelly's

quality of life had severely been compromised those past few months.

When I looked at pictures taken of her the month before, I was

shocked at what my heart and mind would not allow my eyes to "see".

One sense of peace through her death and afterwards was the fact

that we had planned what we wanted upon our death, together, two

years before. This let us have a warm and beautiful memorial service

for Kelly the week after she died.

Let me say I'm not a deeply religious person. I quit going to church a

hundred years ago but have always believed that there is a supreme

being (God?) and I also believe there is a different form of "life" after

death. I was raised Catholic, therefore had always felt a sense of

connection with the Virgin Mary. Now I didn't believe she was a virgin,

but a beautiful person at heart/a good soul who suffered watching her

son be tortured. Kelly and both had several experiences during the last

few years of her illness which gave us both strength in the confidence

she was being looked after. One night, even, when she was hallucinating

and thought evil spirits were trying to take her, with my own eyes I

saw this vision of a beautiful male angel come into her room and give

assurance she was safe. Upon describing what he looked like to my

Mom, she said it was definitely Michael, the Archangel.

After Kelly's death I think I was numb and in shock for many many months.

I functioned every day. Went to work, made critical decisions which

affected many people, went out periodically with friends and tried to

accept their needs for me to "get on with my life as Kelly would want"

and only found true understanding in other parents who had lost a child.

The first few months I still heard Kelly cry out to me at night and would run

into her room. Sometimes I felt her come to me, when I would be crying,

assuring me she was really okay and that she loved me so much. Those

times were very real. The first time even her bedside companion/cat Cuddles

suddenly looked alert and went running into Kelly's room crying and

looking around.

I had lost my Dad two years before Kelly, my Mom 3 months before Kelly

and then my only child. My soul was tired. I found myself daydreaming

and unable to concentrate ...frequently. I cried to myself in solitude....

slowly I got on with life without Kelly. Since I took early retirement last

November, on the anniversary of Kelly's death, I have slowly come back

to being the person I was before Kelly needed constant caregiving.

Sometimes I feel very guilty, feeling "normal" again because I know this

freedom has come at a great loss. To keep my sanity, I constantly reassure

myself that Kelly IS at peace and we WILL be together again one day. My

life is now in "God's hands" and until such time as it is my time, to try to

find joy in each day. To always look for the good and beautiful that IS

surrounding us, when we are not too blind to see them.

I don't know if what I've been through offers you any consolation. It is,

unfortunately, a very great pain that you are facing. No one, not even

others who have gone through this pain, will feel the same as you will.

The only advice I can offer is to continue loving and caring for your son

as you do. Then when the time comes you will know that you gave him

everything you were capable of doing....and that he loves/loved you for

doing so. You will feel regrets over something you thought you could

or should have done, I think that's natural. At first we think that we

were at fault, in some small sense, in why our loved one had to die at

that second. The only salvation there is knowing, in your heart, you gave

everything you had to give.

Love,
Jean