What God is teaching me

God seems to be putting me through very advanced courses on grief and loss. I continue to wait for a child to care for. I've told people that deep down I'd really like a much younger child. And I'd like a child with medical needs rather than behaviour needs. But as I think and pray along those lines, God seems to be saying to me "you do realize that a child like that may just die at a young age don't you" I feel like He's asking me if I'm willing to face this pain all over again. And that if I do I won't get mad at Him and feeling sorry for myself if I lose another child. As I started thinking along these lines the other night I thought of my Pastor and how he's going to get tired of doing Memorial services for my kids. But we talked last night and he sees taking children who may not live long as a ministry that God has given me. Now, I may not get the type of child I want, but I do know I will get the exact child God wants me to have. I just get the feeling that He wants me to think these things through carefully as I wait.

Immediately after Trevor died, I kept telling myself how dumb I was to take a child who I knew would die way too soon. But then I'd think of what my life would have been like without Trevor. All the fun he and I had over the years is worth every bit of pain I feel now he's gone. It's like in the Garth Brooks song "The Dance" "I could have missed the pain but I'd have had to miss the dance" And maybe there's another child out there whose life needs to be filled with as much fun and love as possible in the number of days he or she is given. And, I know I won't be walking this road on my own at all, God walks every step ahead of me.

I look forward to seeing what He has in store for me.

Holding hands

I received this most precious gift today. This is the mould that was done of me holding Trevor's hand just after he died. When Kayda died at CP we'd used paint and done prints of her hands. So I said I wanted to do something similar for Trevor. The recreational therapist went off to get what we needed. When she came back in she had a cart with all kinds of stuff on it. She said she was going to do a cast of Trevor's hand and did I want to hold it. Of course I did. I had to stay still, holding his hand for about 10 minutes. It was the last time I would ever hold his hand. The plan had been for me to take it home that day but it was so cold out that the mould wasn't drying fast enough. A few days later I was told it was ready but I wasn't ready to go back to CP to get it. It was just before Christmas and we'd had a fair amount of snow so the roads weren't good. The social worker tried to get a courier company to bring it but later discovered they'd not shown up. After Christmas she tried again to get it picked up and the courier company said it was too icy and they couldn't make it to CP. So, they were fired. And she finally got to pick it up for me last week and brought it here today. She was very relieved to get it here safely as it wasn't packed very securely.

It's the most precious thing I've ever seen apart from holding his actual hand. I keep staring at it and touching it. I think I'm going to get a display case for it to protect it. I'm so grateful that this was done for me. It's captured so much detail of both our hands.

Update

I found out today I won't be getting the young man whose family I met last week. I'm ok with that. There would have been a lot of challenges with him that I was willing to take on if that's what God asked me to do but I wasn't too sure if that's what would have been best at this point in my life. I will be getting a contract to do respite until at least the end of March. I'm happy to do respite as I can help out more families. And, I don't know if I'm ready to be "mom" again right now. I continue to wait to see exactly what God has in store for me.

Who am I?/Becoming a new person

Who am I? seems to be a big question for me right now. As Trevor was my only child, I am now a childless mother. When Kayda died I told someone that I wasn't a mother any more. I quickly got told that wasn't the case. I know that now. But who am I now and what do I do and who will I be? I'm continuing to read the book Grieving the Loss of a Loved One by Kathe Wunnenberg. The section I'm on now is on surrendering. Surrendering to God allows him to shape you into what He wants you to be. "Rather than adopting the identity of widower or childless parent, we forge a new identity as encourager to our family." Being an encourager to anyone doesn't sound too likely for me at this point. I seem to be mired in grief these days. But, I need to surrender to God and let Him make me someone new. Kathe also says "God is the master refiner. He will transform you and your loss into a productive masterpiece." That statement gives me more hope than I've had.

The other night I just couldn't stop crying. I told God that maybe it was time to take me Home to Heaven. There was really nothing holding me here , nothing I needed to do. How arogant is that statement?! Me telling God that just because I don't know what to do with my life He must be finished with me? I pray frequently for a friend who seems to think that in order to be a complete person she needs a man in her life. I'm doing the same thing as her if I think that I'm not complete and whole without a child. I'm an individual God created. Yes, He created me to care for children with the most severe needs, but that's what I do, not who I am.

I've waited all week to hear from the social worker about whether the family of this young man I met want me to care for him or if I'll be doing respite. It's been hard waiting. As painful as this time is, I know God is using it to shape me for whatever it is that He wants me to do next. I'm needing to learn patience-never my strong point.

I have been "mom" to 2 beautiful children. I never expected to have such an intense relationship with either child as both were unresponsive and unaware when they came to live with me. Through love and attention God worked a miracle and made them into the happy alert people He created them to be. It's such a priveledge to have been part of something so wonderful. I don't know if God has another child for me to be "mom" to or whether he simpy wants me to work closely with families to give them the support they need. No matter what He still has plans for me and they're good ones even if I can't see them or that right now.

I'm glad that I have the assurance that "It is well with my soul" and, "nothing can separate us from the love of God that is in Christ Jesus". And those assurances bring me peace and hope as I go through these dark days of grief.

Trevor, my snuggle boy

This picture was taken about 3 months after Trevor came to live with me. It was one of the first times that he indicated that he knew that I was someone safe to get comfort from. When I first had him he didn't show any awareness of people. He was very wiggly but he was also always gentle. Right from the beginning when I was feeding him he'd touch my hand gently with one finger when he wanted more. I remember one time a month or so after he started living with me when I was picking him up from his moms. She and I were talking and he came over and leaned against me. He'd never shown any awareness of her before. I''m not sure if it was that time or another time when I picked him up but I remember when I was strapping his chair into the van that he reached out and patted me on the head.

It wasn't too many months after he came to live with me that I realized that he loved to be held and hugged. I called him my snuggle boy. He'd just melt into my arms and nestle his head against my shoulder. If I let him go too soon he'd push his head back into my shoulder. I can remember sitting on the floor of his room that first winter holding him close and telling him that God knew I needed a snuggle boy. From that time on, he loved to be held. That's what was so hard when he had the ventilator tube in, I couldn't hold him as close as he liked. And, in the end that was one of the reasons he was so relieved that it was out of his mouth. He could finally get the comfort he'd been looking for. And he got it. I had my arm around him with his head against my shoulder the whole time it took for him to go.

My Kayda had loved to be held too (she didn't at first either) but she liked to straddle my lap and have her head resting on my shoulder like you'd do with a baby. She liked to chew my shoulder. And, that's the position she was in when she died. I had been relieved that Trevor liked to be snuggled in a different way.

And, now I may be getting another child who right now is pretty unresponsive. I probably need that difference for now. But if I get him, I'll look forward to seeing if I can find a way into his world too.

Feeling more peaceful

After needing a major attitude adjustment Saturday evening I'm feeling much better today. I was able to work on scrapbooking pictures of our DW trip without crying tonight. That's a big improvement. I even managed to get through church without crying. I sat in the same place Trevor and I have always sat. I started to look at the space where his chair would have been and get teary eyed but stopped myself. I even got through singing one of the songs we'd sung at his memorial service (In Christ Alone). My friend Heather had her arm around me for that one. It was good to be back at church.

I've been reading through a devotional book by Kathe Wunnenberg called Grieving the Loss of a Loved One. Today's reading started a section on crying; I certainly know all about that these days. She included a poem she wrote which I thought was good:

There is a time and season for tears.
When your heart is full of anguish,
they begin to flow as naturally as raindrops from heaven.
There is a hidden beauty in tears, a welcome cleansing about them.
They should be shed boldly in public or in solitude.
They symbolize how much you have loved and lost.
They commemorate and celebrate your loved ones.
There is a holiness about your tears.
Each one is a prayer that only God can understand.
He created them and shed them Himself.
They are His reminder to you that your soul can have no rainbows,
if your eyes have no tears.

I met a young man yesterday who may come here either to stay or just for respite. There are a lot of things about him that remind me of Trevor. His family is coming to meet me tomorrow night. We'll see what they say. I'd be happy to take him if that's what they want but am really more inclined to want to do respite for the time being as then I can care for more kids and help more families-I'd still only have one child at a time most of the time but could help out more families over all.

Before they come I will need to tidy up Trevor's room. I haven't been able to spend any time in there since he died so it may be a challenge. One of his caregivers is coming for a visit tomorrow afternoon so she can offer moral support if needed. I won't do more than just tidy things up. There's no point in putting stuff away until I know what will be needed.

Depressing evening

I was feeling quite depressed this evening, but I was doing my Christmas cards. Not much surprise that I wouldn't be feeling great about it. When I got the cards (using the above picture) Trevor was still alive and as far as I knew was healthy. I'd written our Christmas letter by the 10th of Dec. and it was very happy and upbeat, and I said Trevor had been healthy all year. I ran out of ink before I could print very many. That's the day everything started to fall apart. So, I've had to revise the letter telling people what has happened since. Most of the people I was sending cards to already know about his death but I wanted them to have the card as it had such a nice picture. There wasn't much point in saving them until next year. It hurt a lot seeing the happy picture. I also sent most people the bulletin from his memorial service. I likely wouldn't be alive if doing this hadn't made me sad.

I sort of get a better sense of perspective when I hear about other families who have lost a child recently. There's a story in our paper about a young woman who was killed in August when a truck drove into the restaurant where she was getting food. Her family is having a terrible time both emotionally and financially. At least with Trevor's death I was there and I know where he is. And, I haven't had to cover any of the costs associated with his death.

I know that one day I'll be happy again and so will our house. I spoke with my other social worker today and she told me about a couple of "fun" kids that need respite. Tomorrow I will go meet the one child whose family is coming to meet me on Monday. Maybe by next weekend there will be a child in the house for respite. That will make all of us feel better I think.

Time line

Our social worker was with us at Canuck Place. She took a LOT of pictures of the whole process of what happened the day Trevor died. I'm finding it comforting to see the times the various pictures were taken. They show how quickly he started to be uncomfortable and have trouble with breathing after the tube was removed. I'll share some of them here.

This first picture is of the tube being removed. It was exactly 1:15



This was taken at about 1:16. He looks happy and relaxed.












This was taken at 1:18, just 3 minutes after the tube was removed. This is his sign he's uncomfortable.














This was taken at 1:19, just 4 minutes after the tube came out.

Just a minute later, the morphine he was given has started to work.

At 1:21, just 6 minutes after the tube came out. He's asleep. He stayed that way the rest of the time.

2:21, he's gone.

I had my arm around him the whole time with his head nestled against my shoulder which is how he liked to be held.

Seeing this time line I realize how weak he was and how little time he managed to be comfortable without the tube for the ventilator. But at least we gave him a chance off of it and some time able to move his tongue and be relaxed. Then we left it up to Trevor and God and God told him it was time to come Home.

It hurts so much

Tonight I'm overwhelmed with the pain of missing Trevor. I'd done well all day and even felt up to doing some scrapbooking of our Disney trip. But then all of a sudden the pain hit me. It was 4 weeks ago today when Trevor ended up in the hospital and our whole world was turned upside down. I understand that his body had just had enough. It still hurts.

Trevor was such a vibrant child that you couldn't miss his presence. He was always so alert and interested in what was going on. When he was younger he was very noisy. When he graduated from grade 7 the one thing both his teachers and the principal said in introducing him was about how loud he was. During the months he was waiting for his spinal surgery he'd get loud when he was in pain. In the year and a half since his surgery he got quieter. But, you still always knew when Trevor was around. Everyone loved him because he was so happy. I know everyone who knew him misses him greatly. It's going to take a long time to adjust to his loss.

The couple of weeks before he went into the hospital he was quieter and not so happy. You could see by his face that he wasn't feeling as good. But, still after he had tylenol or some time resting on his bed his face and eyes would glow again. Once he was in the hospital and on the ventilator his eyes would look at things but they didn't glow. And, he didn't smile any more. Trevor truly lived what is said in 2 Timothy 4:7-8 "I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness which the Lord the Righteous Judge will award to me on that day and not only to me but also to all who have longed for His appearing."

He did all he could with the body he was given.

Along with the grief over his loss comes concerns about my financial state. Everything is very uncertain. However, I did talk with the social worker today about some options. There aren't many children waiting for placement that actually have the funding to place them. I'm going to meet one child and his family next week. He sounds much like Trevor was when he was younger. I will also likely do respite for several children. Having other children around won't replace Trevor or take away the grief but they'll at least keep me busy. Having someone else to hug and care for will help fill in the holes. It will be nice to be able to help other families out again. I used to love doing respite.

Writing things down helps to ease some of the dispair and lonliness.

Still thinking things through

I seem to be stuck on the decision to remove the ventilator from Trevor. I wonder if that is like euthanasia but I know it isn't. We didn't give Trevor anything to specifically cause his death. In most senses he had already died physically. We were actually keeping him going beyond when his body failed. The ventilator gave us time to make sure that his body couldn't recover. It gave us 5 days we wouldn't have had with him had I not gotten him to the hospital in time on that Wednesday or if the drs there hadn't been able to get the tube into him. And, after being reintubaed on Friday it gave us 3 more days. Three days to realize that Trevor's body had come to the end of it's strength. It gave us time to have that lovely party for him on Sunday. There was such an outpouring of love in that room. People took time out of their preparations for Christmas to come in on an icy Sunday afternoon just for Trevor. When I look through the pictures of the people giving him gifts I can see how they loved him. It gave us 3 days to realize that we needed to say goodbye to him. I know we all expected this to just be a false alarm and that he'd do just fine on Monday when the tube came out. He'd seemed so healthy up until that Wednesday afternoon. Sure there were signs now that he wasn't feeling that well. But certainly no signs I saw that said he was dying.

I keep wondering about the decision to take him off the ventilator. Yes, he was living and breathing on it. But the dr said that his heart was so weak that it wouldn't support him for very long even on the ventilator. As I look at the pictures taken of him in the hospital and at Canuck Place I realize that choosing to have the tube removed rather than just sitting in ICU until his heart gave out gave his last hours so much more dignity and comfort. If he'd stayed in ICU he would have been in a fishbowl of people staring through the window surrounded by beeps of machines and only seeing iv pumps near his bed. At Canuck Place we were able to put up the lighted hockey player and other hockey paraphenalia on the wall where he could see it just like it was at home. There were no beeps of monitors. He was able to be dressed. And, most importantly he had no tube in his mouth. It allowed him to spend his last hour able to move his tongue around in his mouth. It allowed him to be hugged by me just the way he liked. That hadn't been possible with the tube. Instead of beeps of monitors, he had people singing around his bed and once the tube was out I put on his favorite Pete Seeger music. I know that brought comfort to Trevor. Pete always had. Removing the ventilator gave his body a chance to let us know if it had more left in it. Unfortunately it didn't

When I spoke with the respirologist before we transferred him from the hospital he told me I shouldn't have any second thoughts or doubts about taking him off the vent. I told him that I knew I would. I think those are surface doubtst and that deep down I know it was the right and only decision for Trevor. I still have some doubts about the decisions made for Kayda too. She had been clearly dying for months but still I wondered if I couldn't have done more to keep her going longer. But, like with Trevor, I've come to realize that their bodies had done as much as they could. Keeping them alive would have involved lots of intervention and monitoring and wouldn't have been pleasant for them. It would have only been for me. I realize that for both children, I (and all the others involved in their care) chose to give their end a quality rather than increasing the quantity of days they lived. I have to keep reminding myself that not one person that was consulted about Trevor's condition spoke up against removing the ventilator. The medical staff clearly were opposed to keeping him on it as they knew the true state of his body and knew the outcome of his condition.

As you can see, my mind goes over and over all this stuff. I know it will continue to do so. Writing it out helps and I hope that my journey will help others walk this horrible path of having lost their child.

A sense of perspective

Tonight as I've been putting away the Christmas stuff, remembering how much Trevor loved it when I put it up just over a month ago, I've been overwhelmed with grief. I want my boy back. But then I make myself look at the songs done about the end which are on his site and on my computer. I see the pictures like this one here and realize that if Trevor had survived this is what life would have been like for him. Life wouldn't have been what it was just a few months ago when we went to Disney World or even a few weeks earlier. His body had done all it could within the limits of the dreadful disease that he had. For a lot of the men with DMD a ventilator and a tracheostomy is a great solution and keeps them going many years. But, Trevor wasn't like them. He was still an infant or toddler cognitively and hated to have stuff around his mouth. He couldn't have tolerated even one minute longer of the tube in his throat. I know that's why he was crying shortly after we got to Canuck Place. He wanted the tube out. I wish things had been different. But they're not. A friend who is a nurse just called, just at the right time. And, we went over the symptoms he'd been showing the weeks before this all happened. His body was already starting to shut down. His heart was likely getting weaker but until he actually got sick and his breathing got so difficult it wasn't having to work that hard. The illness-or just the progression of his condition is what pushed his heart to the limit.

If I have to go into his room to get something I try not to look at much but I do keep noticing his afos (foot splints) lying on the floor. At first they made me sad but then I realized that he doesn't need them any more. And, I remember how much he hated them. He'd always wiggle his feet when I took them off. He isn't limited to trying to get people to understand what he wanted them to do with his body that wouldn't move the way it used to. He's free. He's not here which is painful for me, but he's free.

This picture was taken in July 2008 on a walk along Gold Creek in Golden Ears park. All the way up to the park Trevor kept smiling and saying "ove" over and over. It meant that he loved what we were doing.

Memories help

Missing Trevor hurts so much. But he had such a full happy life. There isn't one thing that I wanted to do with him that we didn't do. He went to Disney world 3 times. He ate sand from the Atlantic ocean, Gulf of Mexico, Hayward lake in BC and stones from the Pacific ocean. He went kayaking in the Pacific ocean several times. He rode on a Greyhound bus twice at Christmas. He held new born puppies and was gentle. He got to touch a new baby on his tray and was gentle. He went to school, went bowling, swimming, to Playland, on boat rides, to music programs, bus rides and much more. He went to numerous spray pools all over the lower mainland. We went for walks at Golden Ears park along Gold Creek. He went in the water at Allouette lake. He went to the Abbotsford air show, the Northwest Washington Fair in Lynden Washington. He went to Colorado for a week. And, he did it all while coping with Duchenne Muscular Dystrophy. For some unknown reason Trevor was severely developmentally delayed as well. And along with his neurological problems he had a lot of digestive problems not normally seen in someone with DMD. Trevor didn't let any of that slow him down for long.

When he'd lose an ability such as the use of his hands, he'd be sad for a week or two but then would bounce right back and figure out a new way to do things. He was so inventive. When he had trouble moving his arms so he could play with his beads he figured out that if he put the beads in his mouth and moved his head it would move his hands into the right position to play. When he could no longer lift his hands enough to play, he started saying words such as "Lun" which meant that he wanted you to go to his room, get the lamb he slept with, bring it to the living room and put it under his hand to raise it up. When he was little and still mobile he'd twist his legs in such a way that he could rest his arm on his foot. He looked like a pretzel.

Trevor was an amazing child. He was so healthy. He only had a few colds all the years I knew him. With his last colds in early 2008 he needed suctioning. He hated that. He didn't even like to have his teeth brushed. If he'd survived this one illness life would have been so hard on him. He would have had to sleep with the bipap mask on at night. I know he wouldn't have liked that. He might have adjusted to it but he wouldn't have liked it. And, whenever he got sick, which he would have increasingly, he would have needed to at the very least been on bipap all the time but more likely would have ended up in ICU on a ventilator each time. He hated that ventilator tube in his mouth more than anything else he's ever faced. God knew that this wasn't the right life for Trevor. He lived his 16 years and 10 months to the fullest. He'd done all he needed to do in his life. Now it was time for him to be free of the disease that had robbed him of so much all through his life.

I'm glad that the decision was clear in the end. Not one person questioned the decision to remove him from the ventilator. And, we weren't rushed into doing it. We gave him time to recover from the unknown infection that made him sick. But in the end it was clear that his body just couldn't do it any more. I'm sorry we didn't have longer after the tube came out but again, how quickly he started to have problems just made it clearer that he was truly at the end of his life.

And, we know that the end was truly just the beginning for him. As I thought through the decision regarding the ventilator I thought of what a friend had told me once. She was talking about the decision to have chemo if she had cancer. She said it was a matter of "chemo, or heaven" chemo or heaven. I thought for Trevor that it was a matter of "ventilator or Heaven" Really in those terms there was no other choice.

I miss him something awful. I don't remember it hurting this bad after Kayda died. But my circumstances were diferent then and I wasn't really allowed to grieve openly. I know I've done a lot of grieving for Kayda on anniversaries and birthdays over the years.

I started to put away the Christmas things today. That was hard as Trevor had watched me put them up. He loved all the lights so much. I'm so glad we put everything up early this year. He had about 3 weeks of enjoying the lights.

I know I'll miss Trevor forever. I still miss Kayda and it's been over 8 1/2 years since her death. But I also know that God has one or more children left to care for. I look forward to seeing who comes next.

This is Trevor just after the ventilator tube was removed. He was so happy to be done with that tube.

My Journey Through Grief

I've started this blog to chronicle my journey through the grief of my son Trevor's death. Trevor died on Dec. 15 after a short illness. My heart is broken but God has been ministering to my heart as I think of Trevor's death. God has been helping me to see that life after his illness would have been very difficult for Trevor and that he wouldn't have liked it. Trevor's life was a full one though it was much shorter than expected.