My angel Tommy

by Charlotte
(Massachusetts )

How do I start this? My Tommy has been gone almost nine months now. He was just 42 years old.
He was a "special" needs child. He was profoundly handicapped and for the first 15 years of his life he lived at home with us.
After a major surgery he went to live in his new home, a pediatric nursing home. He was loved and cared for by aides and nursing staff. He did well, we visited weekly, sometimes more often.
As he got older he would have periodic bouts of illness that put him in the hospital. He would pull through illness after illness, knowing at some point that it would have to end.

A decision, was it a good one?, was made for him to move to a group home.
We had such big plans for that home. He lived closer to us now. So, we could visit, take him for walks in the neighborhood. He loved going outside for those walks. Have him come to our home for visits, maybe birthdays, holidays or for no reason at all.
From the beginning it didn't seem to go well. He wasn't eating well, was cold. He was prone to hypothermia.
He looked confused and scared, I could see it in his eyes. I wanted to hold him in my lap put my arms around him. But you see I could not do that. He was a big boy in a wheelchair. I did my best to
hug him while he sat in the wheelchair, but I wanted more. I wanted to hold him, whisper in his ear that he would be okay, that I loved him so much.

So, after only two months in his new home he got sick again and had to be rushed to a new hospital where he had never been a patient before. The other hospital, where he was often taken, the nursing staff knew Tommy.
I did my usual sitting by his side talking to him, speaking with nurses and doctors in the ED asking questions about what was wrong this time while waiting the hours it takes for him to be
Admitted to ICU. We had been through this before. Never dreaming it would be for the last time. We had talked it over the last few years, my husband and I , about each hospitalization may be his last.
Saying it doesn't mean you really believe it.
But he always pulled through, I guess I thought he would this time too.

The decision was made to take him off life support. We were going to lose him this time.
I wished I had gotten on his bed to lay down beside him to hold him in his last few hours! When he took his last breath.

I miss him terribly! I wish I could be with him one more time, to hold him, kiss him and hug him.

Comments for My angel Tommy

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Oct 26, 2013
Thank you
by: My angel Tommy

Thank you for your kind words.

I don't think I will ever be at peace until I am united with my Tommy again.

Oct 26, 2013
My angel Tommy
by: Doreen UK

Charlotte God gave you such a special son to love and you did this to the best you could. It is not easy looking after a normal child never mind a special needs child. My heart breaks every time I watch this on T.V. All parents who care for a special needs child are angels. You have a different type of life that brings blessings and rewards that you will only realise later on in life. You have a special love and a special type of relationship. But sad when this ends. We would all wish we could have our loved one's with us for ever. Especially our children. No parent is prepared to lose a child and when it happens it is as if the world has ended. Take one day at a time as this is so much easier to cope with grief. Tommy is at peace now and not suffering anymore. It is the one's left behind that go through the agony of loss. I had to bury my husband 17 months ago so know what pain your loss is to you. We all have different life experiences, but the Pain is the same. We wish it would end. It takes it's time whilst we feel assaulted each day with our loss. I am sorry for your loss. May God be with you at this awful time of loss and give you His Comfort and Peace.

Oct 24, 2013
My angel Tommy
by: silver

I can't know how hard it is to lose a child but I do know the worry over a special child.My brother got meningitis when he was 11 mos. old.It destroyed part of his brain.He lived at home until his 40's.The dr's told my parents he wouldn't live to see his teens,then 30's,then 40's and after he reached 50 they shut up.My siblings and I helped care for him when we were younger.When I moved back close to my parents,I helped a lot.Including personal care.We all loved him so much.Both my parents died between Dec 09 and June 10.He outlived them. I now have custody of him.My parents looked at every home within 250 miles of here and found a group home in Tennessee .They take such good care of him.His health is stable at this time but he has had a stroke once.I go see him when I can,it's 2 hours away and I'm in my 60's now.If something should happen to me,he will become a ward of the state but he will still get to live in the same house.They even have a couple of people in wheelchairs.Needless to say they have a waiting list because they take such good care of their residents.I know you are facing so much grief now and I wish I had the words to make it better,but I don't.I can tell you that I TOTALLY believe that GOD has a special place in his heart for those special people.GOD send you strength to help you through this tough time and some peace.I keep all of us who have sent on our loved ones in prayer.

Oct 23, 2013
When you met Tommy one day in heaven.......
by: mskailuakona

I am terribly sorry about losing your son Tommy. No parent should bury a child the parent should die first. So many regrets all of have concerning HOW we would redo things like choices of hospitals. Group home? Treatments etc. always beating ourselves up blaming ourselves. Tommy is an angel now in heaven in peace. No words may express the profound sadness you must feel as the parents. I am praying for your recovery just realize Tommy knew leaving this earth he was loved. Some children go a lifetime without any parent's love so he was truly blessed.

Like yourself I also have a special needs adult daughter, a Make A Wish girl, now 20 years old born in the NICU sick her entire lifetime with congenital scoliosis & a single right kidney. Each day she suffers like your Tommy not as severely with some profound medical issues. She had a life saving seven hour spinal surgery then a five hour jaw surgery. She now lives with a family in California that cares for her attending college part time her dream is to become a nurse. It breaks my heart to hear of your loss. I would rather have 42 years with child then to have NEVER had a child even if it's this painful. She never gives up. Almost every day she has some medical issue so her life is not easy with tons of back pain it was at 74 degrees (at 90 degrees she's DEAD) tho' I still have her. Took her one week in the hospital to learn how to walk again.

Please feel blessed you had Tommy for 42 years tho' his life was very difficult you made all the right decisions. As parents we don't expect our children to die before us or be born with special needs. Parents with healthy children don't understand HOW fortunate they are nor do they think it's difficult 'cos it's not them. Tommy was your son not theirs so please don't be so hard on yourself he is in heaven resting in peace. I will keep you in prayers. No words can EVER express the tremendous loss & pain you have tho' Tommy you will meet you in heaven one day.

Make yourself happy not miserable that's what Tommy would want. We are our WORST enemies always second guessing what if? There's no closure losing a child you will get through it by the grace of God. I often wonder is God cruel? Why does God give us some much pain it's unbearable then I pray never knowing the answer I trust in God he will heal your heart somehow in time. It's too soon always remember Tommy in small ways when he made you laugh or smile. Tommy is smiling at you from heaven right now. God bless :)

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