Matt's Journey (through my eyes)

2011-06-29T15:52:00.000-07:00

Yesterday was my kids last day of school. As I said good-bye to one of my son's retiring teacher's she said this to me "I want you to know that you have a really happy boy, he is very joyful." She knows my concerns for my kids little hearts this year, how I've wondered how much they hurt from losing a brother so young. She knows I wonder even if they fully understand how to process it all and their feelings that go with it. So when she said this to me it meant a great deal. But then she followed it with this, "You have 2 very happy boys actually."
It made me think, isn't our children's happiness and well being what is most important to us as parents? We hurt when they hurt, we cry when they make poor choices, we get discouraged when they disobey. But never because we want it for us, we want it for them. Happiness, comfort and most importantly a desire to know God. And my two sweet boys (and daughter) have all those things. But ultimately, Matthew is as happy, comfortable and close to Jesus as will ever be possible. And I am happy too, that I can know that. So my sadness for that boy is just for me. My heartache is just in the length of time until I will see his smile again or feel his hugs. Nearly 11 months has not taken that pain away, I am learning to cope with it better but missing him is just as strong. As his mom, however, I must rejoice in his ultimate peace and comfort and focus on the fact that I will be with him again. That is a beautiful gift of peace.

How many children do i have?

2011-06-29T15:50:00.000-07:00

I have 3 kids. Matt, Mya and Hudsen ages 10, 8 and 6 at the moment. Trouble is, I can only see 2. I can only talk to 2 and I can only hug 2. So what do I tell people who ask? The question comes up all of the time. I pause every time and still don't know the best way to answer.
My dad says he has 11 grandchildren, (my brother has 5, my sister has 3) then he shows his favorite picture of Matthew (his screen photo on his blackberry) and says to people "this one is in heaven". Twice in the last month I have met people who ask how old my children are. (8 and 6)Then we talk and they ask how long Doug and I have been married. Then they say, you waited awhile to children! Nope, "actually we didn't, we had a son in 2000 who died when he was 9". Silence.....
I talked to my dad about it. He said "You have 3 children, just one doesn't live with you."
I don't want to be dramatic, I don't want to make people feel uncomfortable but how can I leave Matt out?
I have 3 children. Just one doesn't live with me, he lives in heaven.

2011-02-22T20:25:00.000-08:00

I'm busy, too busy. I feel pulled in a million directions. Starting a non-profit organization is difficult and political and it takes fight. I believe in it so passionately that I keep moving forward but I'm weary. Maybe it is good to be busy so that I don't drown in my own sorrow. Right now there is at least 5 other things I should be working on but I just feel kind of empty. Today I listened to a song that reminds me so much of Matthew. ('Come to Jesus' is its unofficial title, by Chris Rice) When I heard it today I wanted to scream, I wanted to cry, I wanted the world to stop so that I could jump off this crazy ride for awhile and just mourn. Mourn for a beautiful life that was tortured from birth. Mourn for my son who never spoke words. Mourn for him because he never walked or was free of pain. Cry out and ask why, despite my prayers, God chose to take Matthew home instead of heal his broken body here. I want to be able to sense him, to catch a glimpse of his beautiful face, to dream of him running and dancing. But I don't and I haven't. I want to understand why I wasn't given the chance to say good-bye. I want to hug him or hold his hand. But I don't and I can't. I know all the true stuff good people say, that he is free now, that he touched lives, that God has a bigger plan for him than I could ever know. I know it all in my head but will someone please tell my heart?

Dear Matt

2010-11-07T01:47:00.000-07:00

It's been nearly 3 months since you left this earth. There is hardly a moment that passes that I don't miss you. It's not getting any easier living without you. It's so strange to me how life goes on, even though logically I know that is the way of the world. People have their stuff, but sometimes it seems somewhat meaningless to me. Probably because I'm almost convinced that there is a real hole in my heart and the pain I feel must be it trying to heal itself. My heart physically hurts, like someone is squeezing it all of the time. I feel lost and I constantly feel like I am forgetting something. Because something[one] is missing and I can't get it[you] back no matter how bad I want to. I am struggling with the sorrow and guilt of not being able to say goodbye to you. I just need to tell you how sorry I am that I wasn't there. I have to believe that Jesus was with you, you did have a smile on your face! But if there was a moment where you were scared and wondering where your mom was, I am so sorry my son. That scares me to think about. The other day I was busy in the kitchen and I sensed you near me. Was it you? Do you know how much I adore you? In heaven can you see and know that you are still the first thing I think of when I wake up and the last thing on my mind before I fall asleep?
You were brave and beautiful. You were heroic and you are missed in more ways than I can even try to express.
Forever your mommy
xoxoxoxo

how to say good-bye

2010-08-22T23:09:00.000-07:00

My beautiful son passed away unexpectedly on Saturday, August 14, 2010. We are still in shock and struggling with our sadness. We had a memorial for him on Friday, August 20. A letter to Matthew came quickly from Doug, my husband and he decided to have it read at the service. This lead me to write one as well but it came much slower to me then it did for Doug. It's pretty tough to find the words to say good-bye. I still have many moments of disbelief. But that said, I thought I'd share my letter to him on here as well.

Dear Matt

I have tried to write this letter to you so many times but words seem so inadequate as I try to express how I feel about you. You see, your whole life my heart has been conflicted. Even before you were born the knowledge of you gave me so much happiness. Your beautiful face delighted me from the first moment I saw you and I was hooked forever. But you started to hurt right away and your pain caused me great sorrow. You have suffered so much in your too short life and although being your mom was my favorite thing, I ached with your every cry. Each doctor appointment came with grim news and I knew that your life would be hard.

I prayed everyday that God would heal you, but He had some other big plans for your life and you were so tough and up for the task. I need to tell you that I'm sorry, I'm so sorry that I couldn't make you well. I'm sorry that you never walked or talked or rode a bike. I'm sorry that you never got to do so many things that most kids get to do. But you know my sweet boy, God used you in ways most people couldn't dream of in their lifetime and I am more proud of you then any mother could be. You inspire, you change, you make us all understand what matters most in this world. You made me dream bigger, love harder, live richer and believe more faithfully. You were the most wonderful little boy, and why God trusted me enough to be blessed with such an amazing son, I will never know, but I will spend the rest of my days thanking Him for you.

And now my most precious little pal, your suffering is over. I'm so happy for you but I'm really sad for me. I bet my old grandpa's and good old Mr. Heppel were really happy to see you, it's comforting to me knowing that they are there with you. I will miss our Sunday mornings and our after-schools. I will miss you in my kitchen visiting me while I bake or cook. I will miss the way you sparkled when your wonderful Papa Paul came to see you. I will miss your beautiful smile and your happy sounds, especially when your daddy had you on his lap. I will miss you in my arms, I loved when you would hug me the best way that you could, thank-you for hugging me.

I'm holding onto the knowledge that I will get to see you again some day. I'm waiting for the day that you greet me with wide open arms and a great big hug. Thank-you for being you, It was such an honor being your mommy. Please know that I love you deeply and that I really really miss you.

Love from Mommy

Matthew's House is honoured!

2010-08-06T11:26:00.000-07:00

New Body

2010-03-04T15:05:00.000-08:00

My daughters teacher was away from school the other day because she had to go to a funeral. This sparked a conversation about what exactly a funeral was. My daughter didn't realize that our bodies would be left behind when we die and go to heaven! (try explaining a 'soul' to a 6 year old). She was a little upset about this, so I told her that we would be given a new and perfect body. I told her that this was especially comforting to those who are sick or who were injured enough that their bodies didn't work well here on earth. She took a moment to think about this and came back to me with this. "When we get to heaven we'll get to meet Matt with a nice clean body. And we'll get to talk to him and hear what his voice sounds like! I can't wait until I get to see Matt like that."
I love the way Mya thinks so much about Matt. How her pure little heart is always so full of the positive. She has said many amazing things when it comes to her older brother and the struggles he bears. One day she asked me if I thought God would ever heal Matt. I said that I sure hope so. Then I asked her if she thought so. Her response "I think God has him be exactly how he is suppose to be." Quite a lot of insight for a little girl.
It is comforting to know that one day Matt will be out of pain and running free from all of his limitations. I too can hardly wait to see him like that. But how beautiful and comforting to know that for now, God has him "exactly how he is suppose to be." I believe that God can use the most painful things of this world and turn them into wonderful gifts. Our prayer is that Matthews House will be that positive gift to Abbotsford's special families and that we as a community will support them.

Redirected Flight

2010-02-11T22:06:00.000-08:00

If I remember correctly Matt wasn't a week old when someone sent me a story. It was about a person who had planned a great trip to Greece. They packed all the appropriate clothes and learned all about the country. They even knew the language. They planned their trip for a long time and anticipated it with much excitement. They got on the plane ready for a wonderful journey. When they arrived however they were in Norway. They thought it was a mistake at first and that certainly they would soon be in Greece. That wasn't possible, they had to stay. They had all the wrong clothes, knew nothing of the country nor the language. They were so disappointed. They wanted desperately to be in Greece where it was warm and everything would be familiar to them. They did not like it in Norway but were stuck there. Over time they grew to appreciate the country and they learned the language well. They slowly bought all new clothes and grew accustomed to all that the country had to offer. It took awhile, but they realized Norway was where they were meant to be all along and that it was better for them to be there then anywhere else. The story ends by saying, and so it is with a special needs child. You don't plan it, you don't want it, but you realize that it was the best thing for you. (This is the story as I remember it, in my own words, I apologize if I have butchered it). Truth is, I hated this story. I was mad that someone sent it to me. You know, I still don't like it. You see, every part of me loves my son, but I'm really still wishing I landed in Greece. I want to be the mom that helps make my kids valentines with pretty lace. That bakes fancy cookies and throws fun parties. I want to be the mom that has a clean house and fresh wonderful meals every night. That works out regularly, is on the PAC at her kids school. The kind of mom who has her nails polished all of the time. I think I could have been that mom. I used to love Martha Stewart and now she just makes me feel like a failure. Truth is, I can't make it work. The extra appointments, laundry, schedule arrangements, medical phone calls, supply orders, meetings, the care! Matt hating being in the car for more than 30 seconds! For those of you that can decide to go for dinner on a whim, do those errands after school with your kids, drive your kids to ballet, skating and soccer, take the time to cut out paper lace Valentines, use a regular babysitter, enjoy it, it's a privilege! And even though I know better, I'll probably keep pretending that I made it to Greece.

2010-01-31T10:38:00.000-08:00

Have you ever said something you regret only dreaming you could take it back? Or looked back at a time wondering why you thought a certain way? I have, and that's 2 of the many reasons why I've never shared the fact that I had a blog. It also explains why I've only 'published' 4 entries in 2 1/2 years. But it's not about me, and now I have motives. We're trying to create a respite house inspired by Matt. (www.mattshouse.ca) And I need to get the word out. I'm told I need to start to tweet, so I suppose that is coming soon too.

We've teamed with Canuck Place and Abbotsford Hospice to create what will be called 'Campus of Care'. The city of Abbotsford has granted us a 99 year land lease near the hospital to build the 3 buildings. (much gratitude to Ken Voth for making that happen!) Now we need to build, which requires funds. This need brings me to mention some very dear and talented friends who have joined with us to start a gala committee. Fundraising here we come. Our potential date is September 11, and we want it to be fabulous. The best gala Abbotsford has ever seen. Dream big, right! So far I've got some pretty fabulous people on my side, I know it can be done. We need entertainment. Someone big, someone famous, someone fabulous and I need connections, so that's my plea! (who do you know that know so and so?)

True story, and why I'm not afraid to dream big:

'Good things come to those who wait', Patience is a virtue', 'don't settle for the cubic zirconia when there's a diamond waiting' (Seriously on the last one, my mom's encouragement when we dated a guy she didn't like!) These statements have been drilled into me since I was a little girl. (thanks mom). Sometimes I'm not so happy about it. We're hoping to build a house soon, we have the plans! We have the land! Timing isn't right husband says, so I wait. No big deal. I want Matt to be better. I want God to heal him miraculously. I have pleaded for that for nearly 10 years. So far I still wait.... a much bigger deal. Want to know something, I may never build a house, I may never see my son healed on this side of heaven but I have all the confidence in the world that someOne much bigger than me has some pretty spectacular plans for my life. One day when I had spent too many days being discouraged I sat on the edge of my bed and prayed that whatever page I opened my bible to would give me words to live by. I said this with very little faith but tremendous hope. Want to know what I read? "Be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told." Wow! you can bet I wrote that on a piece of paper and posted it where I can read it everyday. I'm dreaming (and planning) big!

I'll write again sooner as I pray for the words to share and for the audience to come. It makes me feel so vulnerable but this cause is worth that to me.

2008-05-09T19:50:00.000-07:00

It's May, and spring took a long time to come this year. It seems to have finally arrived. It was a very tough February for Matt, and thus, us as well. Matt's caregivers gave us a call after Doug and I had spent an evening in Vancouver to celebrate Doug's birthday. They were worried about his breathing and so we went there to see him and take them some medicine. We held him for awhile and checked him over. He had been throwing up and had some respiratory issues, not uncommon for him. He did seem very lethargic, we thought it was because of the throwing up. We gave him some gravol and kissed him goodnight. They said they were comfortable keeping him for the next few days as scheduled. I called the next day and he hadn't improved any, so we brought him home. I watched him carefully and he kept his food down that night. I stayed close beside him the whole next day but he continued to get more and more lethargic. That evening Doug and I drove him into the city to the Children's hospital. They were wonderful and took amazing and careful care of him. The Canuck Place doctor joined us and talked to us about a lot of things. Matt wasn't responding after a few hours and we were starting to be extremely concerned. I wasn't ready to say goodbye. After talking to many doctors it was felt that he may not pull through. That we should spend this time with him and say anything we needed to say. I couldn't say goodbye to my beautiful son. It happened too fast. This is not how it was suppose to happen. There were lots of tears through that night, and my heart was so confused. I have always felt that if God were to take Matt home I would want to be there, and that I wouldn't want him to suffer. He really was sleeping peacefully. But this just seemed so frightening to me. How was I suppose to live without him? By about 3:30 in the morning he started to respond a little, and it was then that I knew he was going to make it. We spent the next few weeks in the hospital. Late nights and lots of set backs. Somehow he pulled through. At one point both of his lungs were so full the xray technicians were calling the ward doctor in a panic about the severity of his pneumonia. We were very pleased (and exhausted) when we were finally able to bring him home.

And now life goes on, for him and us. Same pains, same joys. He doesn't seem to go long without suffering. Will his lungs ever completely heal? How many setbacks will he need to endure? Was this just a taste of what is to come for him?

1. Spine surgery 2.Life lesson

2007-12-16T00:21:00.000-08:00

Another visit to the hospital. D went this time! It was with a new doctor who we were referred to for a spine surgery consultation. The best we were told. Matt's spine is twisting terribly, and apparently it twists much like a race track, causing the muscles to deform around his vertebrae. Operating on it could mean 3 months in the ICU, a likely chance of contracting pneumonia, and a great chance of that being fatal. We're not going ahead with the surgery. Truth is it won't really improve his life much, it'll just make him straighter, make positioning easier. Have you seen him lying down lately? He's shaped like an S! It's common in these kids, the doctor says, typical really. It's just that Matt is such a severe case. (yeah, we know!) We need to wait and see if the baclofen pump helps relax the muscles around his hips, and hopefully slow down the curving of his spine. Surgery may be our only option one day, but for now we won't cross that path.

On a more personal note:
When Matt was born, I had all the hope in the world that he would be healed. I thank God for that hope. I don't regret a single day of it. It helped me get through some of my roughest moments. I still believe in a God that is able to do anything, which means I still believe God could heal my son, if He so chooses. I have come to realize though, that that may not be on this side of heaven. I'm okay with that (yet I will never stop praying for it).
I searched hard for a purpose in Matt's injury. Was it a punishment? A lesson? People love to try and figure this out, and many have suggested to me that I likely needed to learn something. I think they need to make sense of it, I understand that, however I do disagree, thankfully. It doesn't mean that I don't have stuff to learn, I have SO much to learn, and I will try to learn whatever it is I can from this. It's just I don't believe that God works that way, let's just leave it at that.
I've never been a "why" person, but I have prayed constantly that the purpose (whatever that is) of Matt's injury would come into fruition so that he may be freed from his suffering. Matt hasn't been healed but I figured out something and it was HUGE for me. I am a slow learner (it took me 7 years) but I have been given the greatest gift of understanding something and I never thought I'd be able to say it. Having Matt has been such an enourmous blessing in my life. A gift, a privilege, an honour! That God would trust me with Matt humbles me beyond understanding. That God would give me the chance to see life differently has blessed me abundantly. I would NEVER have chosen it, and if I could erase time, making it so Matt would have never had to struggle and suffer, I would do it. That isn't possible, so instead I accept this as it is and in many ways it's been the most beautiful GIFT. For life on earth is so short in the view of eternity and having him has made me feel richer, fuller and, in many ways, happier. Many of you probably don't understand this, I don't really either, but it's true. Despite the constant heartache (and there is ALWAYS heartache) and difficulty that comes with having a severely disabled child (and it is very, very difficult) I praise the LORD, for His plans are so much greater than mine.

Baclofen Pump

2007-10-17T15:51:00.001-07:00

We went to the hospital on Monday for yet another visit, met with a bunch of doctors hoping to improve his life some. They would like to put a baclofen pump in him. (Baclofen is a medication that decreases the spasticity, he takes it orally now, but this way it is delivered in smaller amounts throughout the day with an overall better effect). The device is the size of a hockey puck and it sits under his skin near his stomach. It has a tube that goes around to his spine, where the medication is distributed. It gets filled as needed, every few months I believe. It's strange sitting in there, even though I have done it a hundred times. 9 people starring at me and Matt, asking many questions about him and his life, wanting to know again how it all began. I don't like it. It's worth it, of course, if it helps him even a little. I had to go out to fill the parking metre, I was so glad as I was choking back the tears, I took a drink of water and a deep breath before going back inside, it helped somehow. I know people don't see him as I do, as a precious little boy, whom I have all the dreams and wishes for, as any mother would. Somedays I feel like I have failed him, unable to make him better, not able to give him a fair chance. I live with the fact that I couldn't even bring him into this world safely. Logically I know it wasn't my fault, that's why we go to doctors, but still, I failed at the first chance of protecting my son. I know there is a purpose, maybe I won't know it until I'm in heaven, but I will know it one day. I'm sure it's very remarkable. I know his life has changed me, how could it not! Someone once told me (a few years back) that "someone" wondered why everything was always about Matt for me. Why? Because it is. It simply is.

The Beginning

2007-10-14T21:48:00.000-07:00

I suppose I should start this blog by telling the story of Matt, how his tough entrance into this world started a journey we never expected to take. Matt was born 7 years ago, in the fall of 2000. He suffered from a preventable brain injury due to lack of oxygen during his birth. He started to seize almost immediately after he was resuscitated. Had the doctor used a fetal heart monitor, I would have been given an emergency cesarean, and his life would have never been so tough. I wish so much I would have known more going into Matt's birth, but we can't look back, so we focus on today, and hope for an easier tomorrow. He has spastic quadriplegia cerebral palsy caused by hypoxic ischemic encephalopathy. He is completely dependant. I am his mom, and I started this blog for many reasons. A little for others, a little for Matt, but mostly for me. So that those who want to know what's going on can just look, and to give me a way to tell Matt's story, one day at a time.