1. Tell us a bit about your kids- maybe a one liner about each?
Matt would be 17 this year. He was a very gentle boy who taught us all how to be still and that when you care for someone who is completely dependant on you, your heart grows softer to everyone else in the world.
Mya is 14, she’s smart, disciplined and independent. She walks with a confidence we all admire. She loves music, art and books and is a huge Harry Potter fan.
Hudsen is 12 and is smart, witty and kind. He loves sports and makes friends very easily. He may be my very favourite person in the world to have a conversation with.
2. Can you tell us a bit about Matthew, his birth story and some of the struggles he faced?
Oh man, how much time do you have? (wink wink)
Matt suffered a severe brain injury during his birth. Birth asphyxia. He was completely dependant physically and suffered with uncontrollable seizures. He had reflux issues and no muscle control. His poor little body slowly contorted from all the muscle spasms. He was on a ton of medications and had more doctors visits and therapist appointments than you could imagine. He never crawled, walked or talked. He was cortically blind too. He was in pain all the time. In other words, he had it really really rough.
3. What did a typical day with Matthew look like?
One of us (my husband or I) would get up early, get Matt from his bed and change him, which usually included a bath and some laundry. He needed a host of medications and then his breakfast. I did nurse him for the first three months and then gave him a bottle and eventually pureed foods. One feed would take over an hour and then he often brought it back up. He wasn’t thriving and so we had to start feeding him with a feeding tube when he was three years old. Once he was 5 he did go to school when he was able, he went on the bus which I was very grateful for with two other little ones. His school had an amazing resource room and a staff that adored him. When he got home he often needed another bath, he loved the warm water anyway but he also had terrible eczema so we had to be careful. He often missed school because of one reason or another, whether he was too sick or had one of the many trips all over the lower mainland where he had a host of medical appointments. Sometimes he would cry for hours on end and we couldn’t figure out how to help him. Sometimes he was happy and made the most delightful sounds. Each day was a little unknown.
4. What advice would you give to a mom with a child with special needs?
Oh man, hard to know if I could give advice. Only because each child is so unique and us moms can be pretty protective of them and maybe even a little defensive. I will say that I’d hug them if they’d let me! And ask them all about their child so we could rejoice in their happy times and we could cry together over the challenges. I would tell them to take one day at a time if they could, maybe some days one hour at a time. I would tell them that their child blesses this world! I would tell them that it’s completely acceptable if they eat fast food more than they care to admit or leave the laundry longer than they’d like. I would tell them it’s good to get help. We were blessed with a wonderful care family which saved our family from getting worn out. And when you accept help you become a better caregiver and give your child the ability to bless the other people who are caring for them.
5. You lost Matthew just before he turned 10. What carried you through the darkest time in your life?
Jesus. No apologies there. But to give you a longer answer, I will say that I mourned my sweet boy his whole life. Cried nearly every single day for years and begged the Lord to make him well. I felt like a total failure as a mom, I logically knew it wasn’t my fault but I also carried huge guilt that I failed at bringing him safely into the world and failed to find a way to make him well. When he died I wasn’t there and I felt like I failed him yet again. I wondered if he was scared and wanted me. I questioned why I never got to say good-bye. I still struggle with these emotions and thinking of it makes me cry very easily. But early on Jesus gave me peace even amongst my hurt. When Matt was a few days old and the doctors told us of his grim future, God placed a song on my lips “it is well with my soul”. I knew that no matter what we’d face that God would never leave me. And He didn’t. It was very humbling and I knew I could be very sad and still have tremendous joy. The grace that poured on me in the years of Matt’s life still amazes me.
6. How do you find joy even though you’ve lost your son?
I can answer this easily now but it took me a few years to figure it out. The answer is gratitude. Throughout Matt’s life I made a point to speak my gratitude. Admittedly it was out of desperation, not wisdom. I was drowning in busyness and sorrow so I would give thanks to God for all things, big and small, as a way to cope. After Matt died I stopped doing this. I didn’t feel very grateful for one, but also my life suddenly got a lot simpler and I wasn’t so desperate. A good friend gave me a book about gratitude that took me too long to actually read, but once I did it became very clear that my joy had gone not because Matt had died, but because I had stopped being grateful. I started the daily practice of giving thanks again and joy came back to me. I can see a very clear correlation between joy and gratitude. (or the lack there of!) It’s not the same as sadness, it’s totally possible to be sad and have joy in your heart at the same time.
7. How were you able to parent your other two kids and counsel them though the loss of Matthew?
Oh boy, I’m tempted to skip this question. But I feel because I can hardly answer this that I probably shouldn’t skip it. Answer is I’m not sure I did! Kids are really resilient! My kids were going into grades 1 and 2, they were so little. Their teachers were really exceptional and I feel as though the three of them, (the kindergarten, grade 1 and grade 2 teachers) played a huge part in their stability. Especially their grade 1 teacher. She considered retiring after Mya’s year but went on to teach one more year. I know Hudsen needed her. She was so loving and gentle and understanding. I never told her that, so Mrs. Loewen if you ever read this, thank-you for staying that extra year! Also Matt taught us not to sweat the small stuff. Sometimes we (mostly me) forget that but we have a lot of fun, always eat dinner together and talk about all things. My kids and my husband give me a lot of grace thankfully!
8.What’s your favourite thing about being a mom?
Oh this makes me cry too. Being Matt’s mom opened my whole world and heart right open! I fully admit he changed how all of us view people and our lives. And with Mya and Huddy, well, I realize there are many people who will cringe when I say this but being a mom kind of defines me. I love being in my kids presence, I love their hugs. I love how they are so funny and nice. It’s an enormous gift! Those of you who cringed might be wondering what they heck I’m going to do when they leave home, um, good question! I promise I’ll allow them to spread their wings, even if it bruises my heart a little.
** The legacy that Matthew has left is incredible. And one that continues to touch so many. Together, Andrea and her husband, Doug, had a dream to create a place where children like Matthew could come for a time. Where families could experience a couple days of respite but also a place where these children would be loved and cared for by experienced and compassionate caregivers. Matthew’s House was a dream that they hoped to bring to fruition. Sadly, Matthew passed away before the completion of this house and yet Andrea and Doug continued forward. Today, Matthew’s House serves to be a home away from home for many children with complex care needs. Click here to learn more about Matt’s House. – Laurel xo