Remembering Kayda

June 23, 2009 is the 9th anniversary of Kayda's death. Here are some pictures of her on her 6th Birthday and one of her playing with a toy she got for Christmas when she was 6.

I still miss my girl. And, this anniversary is made more poignant after having just lost Trevor 6 months ago. Today I was out looking for something in memory of Kayda. I usually get an angel bear but am having trouble finding them lately. But, I went in to a card store and found this statue of a boy and girl angel sitting on a bench holding hands. The boy is pointing something out to the girl. I started to cry when I saw it but knew I had to get it. I've put it on the case that has the mould of Trevor's and my hands. It's so beautiful. I can just picture them sitting and talking together.

I know the plans I have for you

I know the plans I have for you, plans to give you hope and a future, not to harm you. This is a rough paraphrase of a verse that went through my head a lot in the difficult days after Trevor's death. It's been exactly 6 months since those horrible days in which I thought my world had ended. But it hasn't, nor has it ended for Trevor. He's whole and well and free. And, although I miss him terribly still my life has laughter and love in it again. This past weekend was our church family camp. Last year it happened just before the anniversary of Kayda's death and I just couldn't make myself be happy and free. I decided that I wouldn't attend camp this year even though it's a week earlier. I never dreamed camp would happen exactly 6 months after Trevor died. But, now there is R and I knew she'd enjoy it so I decided we'd go during the day. It was different from before but it was good. She did have a good time which was wonderful to see. Life has changed and right now it's good.

I still don't know what is happening with her. We're still fighting the group home idea. And now she and her mom are fighting along with me to keep her here. That's a huge change from their feelings when she first came. God has really been working in this situation. We will enjoy being together however long that may be. And, if she moves on, I know God still has good plans for my life.

Another new experience

Well, I continue to have new experiences and challenges with miss R. We've been struggling over getting her into a good routine with her bowels. It seems to be feast or famine for her going on her own. I was told to increase her senekot each day but nothing changed. Well, on Monday R asked me to put something in the garbage can that is near where she is most of the time. Lo and behold, there were 3 orange pills in the garbage!!!!!! I haven't had to deal with something like that since I caught a 5 year old daycare child hiding spoonfuls of yogurt under the toy shelves. I just commented that that was why the senekot wasn't working. I now stand over her while she takes her pills.

Life continues to be interesting with her. But it's also good. I enjoy seeing her blossom and take pride in what she does. She's planning to make a special surprise dinner for her caregiver and her boyfriend on Friday.

I still don't know how long she'll be here. The ministry is trying to put her into a medical group home for financial reasons. Another section of the ministry may fund her care here. Clearly she's better off here than in a medical setting.

Update from here

It's been ages since I posted an update here. Life is very busy with R in the house. Her care is very intense so there is little extra time each day. She is very limitted as to how much she can sit in her wheelchair each day. I try to make sure we do as much as possible together during those times. She loves to craft so we do a fair amount of that.

I'm finding that I quite enjoy having an older more alert person to care for. It's funny how after both Kayda and Trevor died I thought I knew what/who I needed or wanted. Trevor wasn't who I'd wanted but he was the exact right child for me. R wasn't who I had in mind as to who was most appropriate for me to care for either but she's exactly the perfect person for me right now.

I still expect to get C but don't know when. Right now R's care is too intense for me to care for anyone else. I've said I can't take anyone else until she no longer needs the wound vac. It's a royal pain to deal with.

There are definitely challenges that I haven't had to deal with before behaviour wise. So far God seems to give me the wisdom for each challenge when I need it. She's really very good. She just doesn't have a good sense as to what needs to be done to keep herself healthy. She's had 19 years of not having proper routines, it's going to take a long time to build them. I hope she's here long enough to build some skills in how to keep herself healthy. I don't know how long she'll be here. She and her mom have decided that it will be at least until her wound is healed-several months. We're hoping by that time they'll agree to the decompression surgery she needs and will leave her here until she's recovered from that. Perhaps then they'll realize she's better off staying here long term. Right now I'm grateful for each day she's here.

She keeps me laughing.

An Easter with smiles and laughter and life

Happy Easter! Although I wasn't able to make it to church today for Easter, I was still overwhelmed with gratefulness for what Christ did for me and what today meant. I kept thinking how different Easter was than Christmas had been. There were no smiles in any of the pictures taken here on Christmas this past year. It was only 10 days after Trevor's sudden death.

Today there were constant smiles and laughter with 2 kids in the house. Z who is 15 is a funny little guy and finds joy in just about anything: as long as Elvis or the Disney sing a long songs are playing. He's just here for the weekend. R who will be 19 on Tuesday is also a constant source of laughter. She's a real tease. Even when she's upset with her circumstances she can still tease and joke. And she's a real companion. Her face lit up when she saw her Easter basket this morning. I haven't had a kid who eats to buy Easter stuff for in a long time. I went all out. I even bought stuff for C who hasn't arrived yet. It will keep-I hope it doesn't find it's way into my stomach. Although my heart aches for Trevor, life goes on here. And for me, having these children as part of my life is so important. This is what I love to do more than anything else.

It's so good to have life in this house again.

Not Lonely any more

My newest houseguest arrived on Wednesday. She's a lovely girl. It's different having someone in the house who talks and talks back. I'm really enjoying her. I was wrong in saying she has fewer care needs than Trevor or Kayda did. She actually has lots more. One thing is that she has to be moved every 2 hours to avoid further problems with her pressure sore. That's a pain for both of us. At least we were able to get the seating therapist to agree that she can use Trevor's comfy chair with the cushion from her wheelchair as an alternative position. And, the couch is also ok. At least she doesn't have to go on her bed when ever she's out of her chair. The last 2 days have been busy with various people coming to check things out. My little guy who comes for respite arrived today. Hopefully things will go smoothly over the next couple of days.

I hope to meet the other young man towards the end of this coming week. After this weekend I won't have anyone for respite for the rest of the month. That will give us time to get my new family settled. Neither can be transported in a regular seat so I won't be able to take both out at the same time-in the van anyways. R will get her power chair soon-therapist just has to approve the cushion and C can also wheel his own wheelchair short distances so walks will be possible. The bus would also be a possibility. C will be in school or a day program 5 days a week which will help.

So, I'm not lonely and am happy to have life in the house again. At first I was feeling like I was betraying Trevor by being so happy to have someone new, but it's like I've said before, Trevor's work was done, mine isn't. It appears that I'm developing a reputation as people that had never met me before were the ones who suggested I should have R. They thought we'd be a good match. I agree that we are. And, I know that if she doesn't stay long term there will always be more people needing homes.

What a week!!!!

When Trevor died, I told the social worker I wanted to be kept busy with kids. It's now been 3 1/2 months since his death and for most of that time I've been on my own. Well, that's about to end and in a big way. Last Friday I was told that I'd be getting a 19 year old boy full time and that I'd be allowed to continue to do respite for the 2 children I'd been caring for. I was very excited. This young man is more advanced cognitively than Trevor was and I am looking forward to seeing what all he and I can do. But, then, on Monday morning the social worker called me and said there was a bit of a wrinkle in our plans. When the 2 social workers got back to their office after seeing me Friday they were told that there's a young girl who needs a home right away. So...........it looks like I'm getting both. I will be meeting this young lady tomorrow and she will likely come to stay on Monday. She has spina bifida and is currently in hospital. Officially she's here for a few months but it may become permanent. On Friday I will likely be meeting the young man. I'm not sure exactly when he'll come to stay. There are a number of things we'll have to figure out. Fortunately this house has 3 bedrooms. So one will go in my room and I'll sleep in either the room used for the respite children or in the craft room. I'm going to have to get creative in where my books and clothes and such go. And do a major rearranging in both sheds outside. I'm cautious about having 2 full time with a 3rd 8-10 days a month. I will obviously need help. One thing that I have to see is if the girl can sit in a regular car seat. If not I won't have a way to transport all 3 of us at once. Hopefully I'll know that tomorrow.

I just hope I can take good care of more than one child at a time. Both have fewer care needs than Trevor or Kayda did so I think it's possible. I'm sort of hoping that the boy can wait until after Easter to come to stay as I have a child for respite for 5 days over Easter. But, it would also be nice for him to have Easter in his new home. The next week or so will be interesting. I'm glad I've had a good rest these last few months.

Three months

Well, it's been 2 days over 3 months since Trevor died. I still have trouble believing that he has. I'm currently just beginning to scrapbook the last day of his life. I've done up to the party we had in ICU the day before he died. It's going to get harder as I get towards the end but I feel the need to get these pictures taken care of. I'm now thinking ahead to doing other events in his life that haven't been done yet. It will be nice to work on happier pictures.

I still just have 2 children for respite. One is here for the 2nd time and will be back again next week. The other has just come for 1 weekend so far. He slept in Trevor's bed and room and I was fine with that, even when he made sounds like Trevor did. Both boys are a joy to have and quite different from Trevor. I continue to wait to hear of someone more long term. I'm hoping to be able to continue to do respite for a few children even after I have someone permanent. I always feel better when I have someone to take care of.

In the meantime God has given me the gift of being in touch with a young girl who I looked after when she was a baby and into childhood. I'd had no contact with her since her family moved away a number of years ago. But starting with the email I sent the family when Trevor died I've started having contact with Carly. And, since I started using facebook we've been chatting most days. She talked me in to getting a webcam and MSN messenger so now she and I can watch each other doing things. She likes to watch me sit and scrapbook. It makes me realize how little time I actually sit in one spot when there's a camera watching me. It's really been a gift to be in touch with her again.

The bed!!!!

This is a picture of the enclosed bed I was given to use with kids for respite who need it. The only problem with it was that it was delivered to me in pieces with no hardware and no instructions!!!!! Fortunately my pastor was able to give up his day off and help me get it figured out. As you can see it's solid and very heavy. It might work better against a wall but there's no way it can be moved. I hope it doesn't need to come down any time soon. This is what I was thinking of making in to a tent or fort for kids who are more alert who might sleep in it. I don't want them to think of it as a "cage".

There's a child in the house again

There's a child here for a few days. It feels so good to have him here. He's different from Trevor which is good. But he's just as sweet as Trevor was and loves to snuggle.

With the help of another child and a child I looked after many years ago I've been learning how to communicate via other methods such as Skype and MSN. It's been wonderful being able to see people as I'm talking to them.

So new life is starting here. It's slow but it's coming. I've started to scrapbook Christmas pictures which will include the end of Trevor's life. That's going to be hard but it's something I need to do.

No Regrets

Trevor's death continues to be very painful for me. I'm not having as much success blocking out the pain this week as I did last week. But, when grief threatens to overwhelm me I think about his life with me and know that I have only one regret: that was that I didn't let him get closer to the water when we were on the beach at the Gulf of Mexico. I let my fear of the water and the waves interfere with that. But, Trevor never held that against me. He was happy where he was. Other than that, there isn't one thing I wanted him to do or place I wanted him to go or event I wanted him to see that we didn't do. It would have been nice for him to meet Pete Seeger but logistically that wasn't possible and Pete may not have even wanted to meet him. But, hey, Trevor got to meet Barney in person and see a live Barney show-twice actually. At the time Barney was his favorite character.

I have the comfort of knowing that we packed as much life as possible in the 7 years and 9 months that he lived with me. And, I have the physical evidence of that life in his scrapbooks. That drives me to keep going and to finish doing all the events we have pictures for. I had skipped a lot of events over the years. I'm now done our Disney World 2008 pictures and am working on the few I had of fall 2008. Once that's done I'll start doing our Christmas pictures. That will include his end of life. I feel I have to get that out of the way and then I can go back and fill in the blanks. This way we'll never forget all that Trevor did in his short life. I'm so grateful to God that he allowed me to do all the things we did. We couldn't have done it without the friends that helped financially and physically.

Beautiful things that happened the day Trevor died

Today it's been 2 months since Trevor died. I've tried not to think about it all week and even this morning. I couldn't help thinking "at this time that day I was ...... or he was..." But even though Dec. 15 was one of the hardest days of my life there were some beautiful things that happened:

1. the smile on Trevor's face when I told him that if he had trouble breathing after the ventilator tube came out he'd go to sleep and when he woke up Jesus would be holding him.

2. the look on his face and in his eyes when the tube came out and he realized he could move his tongue again.

3. the feeling of holding him close to me the way that had always brought him the most comfort and the way I couldn't hold him when the tube was in place.

4. the people who gave up their day to just be at Canuck Place to say goodbye to him

5. the little things people did to make it more pleasurable for Trevor, right from taking down a picture of frog which had been on the wall and clearly bothered him, to putting up some of the same sort of decorations on the wall that he had at home.

6. The music therapist coming to play her guitar while we sang "Be near me Lord Jesus I ask thee to stay....."

7. The nurse who knew that Trevor needed pain meds as soon as that need was just barely visible

8. the beautiful surroundings

9. the compassion of all we encountered that day, even from the respirologist, the ambulance attendants, the staff of Children's that came with us, right down to the fact that the lamp was turned on on the front desk at CP indicating that a child was in house dying.

10. The way no one rushed us into taking the tube out. We were given time to get ready

11. the fact that Trevor was never alone for even one minute from the time we got to Canuck Place until he was gone.

12. I had my arms around him from the time the tube came out and never took them away.

13. The way Trevor looked at me as I held him just before he fell asleep from the effects of the morphine. That was pure love and trust.

14. The signed Canucks Jersey that was left for us

15. Trevor felt no pain whatsoever.

16. The knowledge that as he took his last breath he was at that very minute free of the confines of his earthly body.

17. All those who gathered around to support me even as they were grieving themselves.

The death of someone you love is horribly painful, but there is beauty there too. And, I count myself as blessed over having been holding both of my children at the time of their deaths. I'd always prayed that I would be there when Trevor died. I knew he'd likely be too big to be holding him on my lap but I wanted to at least be in the room and preferably be touching him. I am so grateful that he didn't die on Friday while I was out of the room having a shower. Their saving him that morning gave us 3 days in which we were able to all pour out all our love onto Trevor. And it gave us that most beautiful party that we had Sunday afternoon. It didn't matter to people that Trevor was dying and wouldn't use his gifts, what was important was that he was alive then and they loved him and wanted him to have things he'd love.

I still find it hard to believe I survived Kayda's death and that I'm surviving again. But, I'm not doing it alone. I find it comforting to think that because God is with us all the time, and we know that our loved ones are with Him, therefore they are also with us.

Please Be Gentle, An After Loss Creed by Jill B. Englar

This is one of the poems I received in the mail:

Please be gentle with me for I am grieving.

The sea I swim in is a lonely one and the shore seems miles away.

Waves of despair numb my soul as I struggle through each day.

My heart is heavy with sorrow. I want to shout and scream and repeatedly ask "Why?"

At times, my grief overwhelms me and I weep bitterly, so great is my loss.

Please don't turn away from me or tell me to move on with my life or I should be over it by now. I must embrace my pain before I can begin to heal.

Companion me through tears and sit with me in loving silence.

Honor where I am in my journey, not where you think I should be.

Listen patiently to my story. I may need to tell it over and over and over again.

It's how I begin to greasp the enormity of my loss.

Nurture me through weeks, months and the years ahead as I begin my life long journey.

Forgive me when I seem distant and inconsolable.

A small flame still burns within my heart and shared memories may trigger both laughter and tears.

I need your support and understanding. There is no right or wrong way to grieve.

I must find my own path.

Please will you walk beside me?

New strategy in grieving

I've discovered that it works better just not to think about anything that might cause pain. If I see something that reminds me of Trevor or the empty house, I just refuse to go there. I do much better if I just keep on going without thinking. I'm making progress on completing scrapbooking the pictures of our trip to Disney World in September. I just avoid thinking about the fact that Trevor isn't here any more. I focus on the fun we had. I managed shopping today by just avoiding areas I'd normally go to to buy things for Trevor and if I saw something that reminded me of the pain, I'd just not think about it. Otherwise the pain of his absence and the emptiness of the house is overwhelming.

And, to make things just a bit easier today I received 2 surprise packages in the mail. One was from someone I've never met or heard from. She found my address and name in a newsletter I get for parents who have lost a child. She sent me a whole package of poems and readings about grief. I really appreciated them. It made me realize I've stayed away from reading or listening to poems or songs about grieving as it's been too painful.

And then I came home from grocery shopping to find another package in the mailbox. It was a prayer shawl from a long time friend. It was made by someone in her church to be sent to someone who needed to be cheered up and know they were being prayed for. It was so sweet. God uses these little gestures of love to remind me I'm not alone.

I've also been chatting with a girl that I used to care for before Kayda and Trevor came to live with me. I'd had no contact with her since just after I got Trevor. Talking to her now is another reminder of how God can use people to show how much He loves us.

God knows just what I need

Today was major house cleaning day. That meant shampooing the carpets, mainly the one in what was Trevor's room. That meant I had to see all his empty stuff especially his emtpy wheelchair. I had to keep moving it out of the way. Seeing it was hard. I know it's empty because he doesn't need it any more. He's walking and free in Heaven, but he's not here and I miss him. But, just when I was feeling at my worst, I checked email and there was an email from the boy (J.) I looked after on Saturday. He was just saying hi from school. It made me laugh. God knew that I needed a silly boy in my life right now. Just like after Kayda died, God knew I needed a snuggle boy, not a snuggle girl. Even if I don't take care of J. for another couple of weeks at least I know there's a silly boy out there somewhere that I can get to know.

I phoned the social worker today and asked him to send me more kids for respite. They're probably not used to people begging to be put to work. So far the only people I know of are all boys.

Starting to live again

My last few days have had more life in them than any since Trevor died. I got a surprise email and then phone call from Trevor's bmom. We had a good talk. And, I now have talked to 2 moms who'd like me to do respite for their children-both boys. One is 12, in a power chair, deaf and at his age level cognitively. That scares me. I've had no contact with 12 year olds for many years. He's coming Saturday just for the day. He likes to go on the internet and his communication system has wireless internet so that should help. So far it looks like the weather is going to be ok so we can go out for walks. I hope he has fun here. He uses sign language which I know little of. I only know the real basic signs used with those with severe developmental delays. But he has a Dynavox so hopefully we can use that to communicate. I'd met his family many years ago when he was a baby and knew of him but have had no contact with him. It should be an interesting day.

I can't remember how old the other boy is. His needs are more familiar to me. But he's mobile when he's out of his chair and can pull himself to stand and get into things. His mom will come over and tell me what in our living room will have to be put away-I'm imagining lots. He also has a sleep disorder. Fortunately I've been told that there's an enclosed bed I can borrow so that will help him be safe at night. We don't have anything set up for respite yet. His mom is just checking me out.

And, I've been told of a 3rd boy needing respite. Apparently he's quite big but that shouldn't be a problem with our lift system. Don't any girls need respite?

I'd forgotten how much I enjoy doing respite. You can put in a lot more energy when you just have the child for short periods of time. Unfortunately at this point my contract just goes to the end of March which will be hard on the families. But I'll get as much time in with each child when I can now.

I don't know anything about the young man who may come here to live. Adult services has to decide if they can pay me what I need in order to keep this house. His needs aren't as severe as Trevor's were so they may not be able to justify that sort of expense. But it's still in the works.

All in all I'm finding more to look forward to than I have since December 10 when Trevor first got sick.

We survived today

Well, with the help of friends I made it through Trevor's bd. 4 of the people who were closest to Trevor came over. We had a really nice time visiting together. I gave each person a gift "from" Trevor. I gave them each something of his from our trip to Disney World in Sept. Noone cried.

I also learned some more about the young man I might be getting. He sounds intrigueing. He apparently has a fixation on food. He'll fit in just fine with one of my cats. The cat has figured out how to open the kitchen cupboards so I'm sure this young man will make good use of this skill-except once I put everything up on the top shelves. I know I'm crazy but I quite enjoy having someone who can get into things. I'll just have to keep him busy enough that he doesn't get bored.

Start of thinking about seeing the light in life again

Tomorrow would have been Trevor's 17th birthday. It's going to be a very difficult day. I've currently got a horrible cold so I'm hoping it's better tomorrow. I have a few friends that were closest to Trevor coming over. We'll have pizza and ice cream cake. The cake has butterflies on it and says "Happy 1st Birthday in Heaven" The sales person didn't say anything when I told her what to write and I'm hoping tomorrow that no one will say anything either.

The last week has been very difficult with lots of tears. I think some of the numbness I felt after Trevor died is wearing off and his death is becoming more real to my heart.

I got quite upset when the social worker phoned me a week ago saying that he'd had problems getting my respite contract in place and therefore I was going to have to take a full time placement as soon as possible. He said that a couple of adults who needed a full time placement had come across his desk that week. I got very upset at the thought of taking in an adult. I've always been waiting for my baby to care for. However, as the days have passed I've realized that most of my friends are now parenting adults. The sw described one young man that he thinks would be a good match for me. He uses a communication system so is more advanced than the other kids I've cared for. I've started to get intrigued by him. I told the sw to go ahead and start proceedings for me to take care of him. I need to meet him and get to know him first. I'm going to talk to the sw tomorrow or Tues and ask if I can start getting to know him while I wait for someone to do respite for. This young man had been in a long time foster home and had to be removed suddenly due to illness in the fall. He's been at a children's respite home (I met him briefly the last time Trevor went there). Although he gets good care there, there's not a lot of stimulation. So, I'm starting to think that it would be in his best interest to move to his permanent home as soon as possible.

I'm not sure how much red tape and hoops there are to jump through first. I know Adult services has to do a home study on me. But, I'm now hoping I can get him soon. Perhaps even skipping doing respite care all together. A friend had said that she didn't think he was a good match for me back when I mentioned him as a possibility just after Trevor died-she works for an adult program he's in. I'm hoping to get more info from her later today. I worry that he might not like living with an old lady like me but I'm hoping we can get along together really well and have a lot of fun together. Ápparently he's not had a lot of stimulation in the last few years, so I'm looking forward to seeing how far he can go with lots of activity and one to one care.

Of course, he's not Trevor. But Trevor doesn't need me any more. Someone else does.

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.