Testimony

Each Sunday, one family from our church has the opportunity to introduce themselves, sharing how they arrived at this church, a little about their walk with Jesus as well as anything else they wish to share. Last Sunday was our turn. I'd like to share that now with you.

I have been part of Spruce Grove Alliance Church since I was a baby and became a Christian when I was around 4 or 5 years old. I grew up in a secure Christian home and was baptized at the end of grade 9. Doug and I started seeing each other shortly before I graduated and after three years, three months and three days of dating, we were married.

This summer we celebrated our 18th wedding anniversary and we have four great kids with us today: Joshua, Andrea, Arianna and Sarah as well as three more that we will meet one day when we get to Heaven. In those 18 years, we had seen many ups and downs including the loss of my mom when I was 23. That event was a very critical point in my journey with God as my mom was faithfully leaning on Jesus, even when she knew there were no more answers. One prayer that she wrote in her journal was that her children would continue to follow Jesus, no matter what happened. I desired to have a faith like hers, one that was unwavering, confident and fully trusting in Him.

Fast forward a few years to November of 2011 when our world was once again turned upside down. We had received the news that Sarah had cerebral palsy and microcephaly, which means an abnormal smallness of the head and brain.  These two diagnosis together are what cause her to be severely delayed in all areas of development. It was also around that time that Doug and I thought something was going on with him and that’s when our journey with his depression began. I’m not sure where I thought God was at that time but I know well enough now, that He was there, holding me close even when my world seemed so dark.

When I think of how following Jesus has changed my life, one of the greatest transformations has actually occurred over the past 2 ½ years since we started attending Calahoo. My first encounter with this church was the summer of 2013 when Andrea was helping with worship for VBS and someone dressed up in a medieval costume showed up at my door to pick her up. Even before we were attending, people were being Jesus to us- someone was offering to bring Andrea to and from the church for me. That simple act by Michelle very quickly showed me how willing she was to bless me.

In the December after we began attending here, a couple friends and I were doing a prayer study with L. One of the first questions we were asked was “what is my relationship with God like?” and then “how would I like it to change?” Over time, it became clear that God was much more real than I had believed and He was desiring a much closer relationship with me. I have been a believer since I was young and I think over time, I had become comfortable in my faith and that comfort was robbing me of my dependency on God. I have been challenged physically, with my own heart issues, emotionally as I continue to learn about depression as well as being the mom of a special needs child and spiritually, understanding that God is who He says He is. And all the while, seeing God walk with me each step of the way.

I am learning to lean on Him and trust that He will carry me through every high and low in life. Making new friends as we get older isn’t easy but I have built so many wonderful relationships here and I am blessed by them all. I love being supported and encouraged by others, I love the group that meets on Wednesday nights and I appreciate being able to be real and honest with people. I also love how prayer has changed me. From sending out texts asking for someone to pray for me, to receiving them in order to pray for others and trusting that Jesus will answer. This was evident this past week as we were praying for a friend's little boy.


In our most recent chapter in the ladies study, we learned about Mary's courage when she was informed that she would be the mother of the people's Saviour. With a submissive spirit and servant's heart, she tells the angel, "May it be". We are invited to that kind of faith- one that calls us to face our fears and embrace uncertainty, because we don't know what God has in store for us. We leave behind the feeling of security, which forces us to trust in the sweet love of Jesus. That's what Mary did with a contented and obedient heart and she leads a wonderful example of how I want to live.

Merry Christmas Eve!

SEVEN!

Seven years ago today, the tiniest baby I have ever held was placed in my arms. At six pounds, one ounce and only 17 inches tall, you were by far our smallest baby. On that night, I had no idea of what the next few years would bring. It took us till you were almost three years old to realize maybe something was a little unique about you. Through a myriad of testing and appointments, the final diagnoses were: severe microcephaly (small, underdeveloped brain), cerebral palsy, sensory processing disorder and severe global developmental delays. These last few years have been such an educational experience for our family and I am beginning to be less upset when I think of what you've gone through. We have watched you learn so many new and wonderful words and each new phrase brings us so much happiness. We have learned to take great delight in even the smallest achievements- perhaps things that would have gone unnoticed with the other kids. You are pretty easy going and simple things please and delight you.
Some of your favorites at 7 years old are:

• bubbles
• helium balloons
• your siblings
• Kraft dinner
• Kayla
• iced tea
• playmobil
• Grandma
• playgrounds
• going to church and the people there
• Lucy, Rosie & Ben
• the many stuffies you have
• hug-uppies
• Curious George
• goldfish crackers
• cheerios
• play doh
• anything outside
• my coffee

 You were so amazingly cute, I could hardly handle it!

 Three years!

 FOUR!

 Five!

 Six years!

My most favorite, treasured picture ever!

Today we are enjoying Sarah's seventh birthday! Actually, we started celebrating last Thursday when we had a family party but it's been a fun weekend for her. She loved being sung to at church and each gift was received with a huge "Thank you!"

 The biggest helium balloon I could find!

So excited and thankful for the cupcakes. Which she didn't eat.  

So unbelievably happy to be opening presents. Playdoh, a slinky, Fruit Loops, books and Smarties.

Her joy makes my day!

On Sunday, our little church sang to her and she clapped with delight at the end. We also make a short stop at Grandma's house since Grandma was recovering from her small heart attack earlier this month. On Monday her two cousins came for some birthday treats and a visit and then in the afternoon, her friend also came over for a little while. She was able to see all her favorite people in a short amount of time. It was so much fun to celebrate her! 

Oh little daughter of ours, how we love you! Hearing you say "best birf-day ever Mum" made my heart so happy. 

Happy seventh birthday Sarah!

I Made a Choice

I'll be the first to admit that not every day is easy with Sarah. She puts on a good face when she's around others and usually friends get to see her best side. Saturday morning was one of those times where the severity of her special needs came through, loud and clear. Literally as she cried most of the way from Edmonton to home- about 25 minutes. It was exhausting listening to her desperate pleas of begging to have me cuddle her. No matter how many times we told her she needed to be in her carseat where it was safest, she wouldn't be convinced. By the time we arrived back at home, she clung to me as her hicupping sobs slowly subsided. I too was deflated and my own tears flowed as my emotions seeped out of me.

{She hasn't ever enjoyed her car seat- in fact, she cried all the way home from the hospital as a teeny newborn. Although she doesn't always cry, most times she fights it. Getting in is fine and she usually is happy to be going somewhere. The "fighting" (as we've dubbed it) means she pushes on her thighs with her hands and her legs lift up against her hands. It's a small, but fluid motion and requires many reminders to ask her to stop. There are times when she's so resistant, she almost doesn't even hear us. If one of the kids is paying attention, they can set their hand on her leg and she's perfectly fine. Not very comfortable for them, but it calms her. At the end of September, we are making a long trip to see my brother get married. Needless to say, after only 25 minutes of crying, I wondered how the six of us will survive a trip to the coast.}

Later that day, as she and I spent the afternoon in the backyard together, I sat on my chair reflecting on her and who she is. I knew I had to redirect my thinking from frustration to doing something that I know Sarah loves. And that was to take her for a walk to a park. She loves going to playgrounds, especially when there's no one else there. Again, I think it has to do with her sensory issues and if she only has to worry about herself and not what the other kids may do, she's much more relaxed.

 At the top of her "mountain" and she was the queen!

On Sunday, I suggested that we head downtown and check out the Legislative grounds. It was a lovely day and when we arrived, it wasn't even that busy. Sarah loved wading in the pools. Once she realized that her dress could get wet, she had a wonderful time splashing and playing in the water. After the rough beginning to our weekend, I'm so thankful I was able to make it a special time for Sarah and the rest of the family. 

Would We Want to Cure Her?

I had recently read a blog that began like this: If you had a magic wand that could "cure" your child's disability, would you use it? 

The answers varied greatly and I got to thinking that I would like to answer it as well. I also asked Doug, the kids and my in-laws for their thoughts on this. The answers all vary and I love everyone so incredibly much. I am very thankful for their input and thoughts as they helped create this blog post. I am blessed.

Arianna - Age 10½

I don't want her to change. Sometimes I wish she was "normal" so she could play with me and we could actually talk.

But then I think about all the hug-uppies and cungles and I change my mind. I love her so much I'm glad I have her as a sister.

Andrea - Age 14

It's a really hard question, because I don't know what things would be like if she was 'cured.' Would she be happier? Less stressed? Get hurt less?

But my answer is no. I never want Sarah to change, even if there was a miraculous way to 'heal her.' She doesn't need healing in my opinion. She is delayed, both physically and mentally, but she's also the most caring, sweet six year old I have ever met. Why push her to grow up as fast as the rest, when she's perfectly happy growing at her own pace? She's learning new things every single day, it's just taking a little longer than the rest. 

My sister is beautiful. She has the biggest heart, the best hugs, the sweetest words and the most wonderful 'I love you too's' and 'I missed you so much's.' She's perfect just the way she is and I would miss her so much if she changed. 

Joshua - Age 15½

No, because then she wouldn't be who she is.

Doug 

If there was an opportunity to "heal" Sarah and bring her to 'normal' function, would I want to pursue it? I really don't  know - a part of me would be afraid of messing with who God made Sarah to be, and losing some of who she is in the process. The best I can offer right now is a kind of for-and-against list.

The first premises that would have to be assumed is that the process would be established and safe, and that no harm or distress would come to Sarah in the process... that said:

For 'Yes':  This would be primarily for our benefit, rather than hers. It would mean that we would more free to spend time just as a husband and wife, and with our other children one on one. It would mean that what is best for Sarah school-wise would be more certain, and the systems that are in place would be a better fit.  Her peers may better understand her, and she might not be pushed around to the same degree that we see now. (and foresee in the coming years)

We would not have to prepare to care for Sarah into her adulthood.  We wouldn't have to fear that she might be taken advantage of as an adult.  

As an adult, she would have a better chance of living independently and 'successfully' by society's standards.

For 'No': Sarah is about the most loving person I know. She is not suspicious of others, she is not aggressive or a bully to others. Sarah unabashedly shows her love for people around her up to and including kissing someone's feet. Why would I risk altering those things?

Sarah has taught our children what it is to care for and defend someone who is not like the majority. That people who are 'special needs' also have a lot to give, and that they have value.

Sarah has taught Stephanie and I so much... That even the hard things in life have a blessing for us. That uncertainty can drive us closer together rather than apart.  That seeing the beautiful flowers in a cemetery can ease the pain of grief. That a hug-uppie may not fix everything, but it helps a whole lot. And that sometimes, it's okay to cry about how hard it is to cope with the challenges.  It's good to share with others who have special needs children, and it's good to share life with others because we can grow and help others grow too!

So - would I take the chance to 'heal' Sarah? Probably not.

Me

I think there are two sides to everything and my heart sits on the fence of both. In the end, my answer is what it is. 

For 'yes': 

Like Doug said, if Sarah was cured of all her delays, it would be for our own benefit, not hers. For one it would make some things like homeschooling easier. The curriculums are for typical kids and she would more readily grasp the concepts that I would teach. There would be less frustrations on my end since right now I need to do all the curriculum creating on my own.

I would not worry about what her future will be as she becomes an adult. She'd be able to pursue a career, have a family and live on her own. Perhaps that can still happen but with her delays as they are, her future is much more uncertain. I often think of what her life will be like as she gets older and it occasionally causes me some concerns. It's a scary world out there and I don't know what she would be able to handle on her own. 

She would be able to stand up for herself when circumstances arise and I wouldn't need to explain why she does things her way. She would likely eat normally and diapers would be a thing of the past. So yes, there are some areas that would make life here a little simpler if she didn't have the issues she does. I would love for her to be developmentally on target with her peers, being able to play age appropriate games and talk to them at their level. It would be nice if things were just easier for her.

For 'no': 

Sarah is who she is because God created her that way. She is perfect in His eyes and mine. The things I have learned because of Sarah are innumerable and I am blessed beyond words. She has taught me compassion, unconditional love and grace. I have learned to trust God with her and many times I surrender her back to my Father like we did six and a half years ago when we dedicated her as a newborn.

Sarah has also taught our family how to respect and care for those who fall into the "special needs" category. My children are very aware of others who have struggles and their hearts are so open to them. They have learned how to love in a very different way and I am so proud of who they are because Sarah is in their lives. I have learned to be honest as well. There have been times when asked how things are going and I lay it all out on the line. I don't keep much bottled up inside anymore and greatly value the people who have listened to me. 

Having a child with severe delays and a condition that has caused her brain to grow considerably slower than others has made me more educated on topics that at the time, I didn't even know existed. I have made many friends online who I may never meet but who can understand what I'm going through. All my life, I have loved babies. For as long as I can remember, I played with dolls, doted on my youngest brother and then my four cousins through the years. Sarah is young. She is staying young. She is growing physically but inside my baby is staying a baby just a little bit longer than the rest. She curls into my lap with ease and can still be picked up by everyone in our family. Her little quirks of asking for a hug-uppie, needing cungles and wanting everyone around her are yet other ways that make her unique.

My daughter sees the good and beauty in everyone and everything. She loves anyone who will love her back and her dimpled smile can wash away my tears any time. She also doesn’t know life any differently. She has a family and friends who love and adore her and she sees everyone as good. A "cure" would change who Sarah is and I wouldn't want that for her. It would mean getting to know a new and different person, and I don't think I'm ready for that. I have to have faith that God will see his plan for Sarah through. My life took a sharp turn off the road of "normal" the day we received her first diagnosis in November of 2011. Life is still normal, it's just a different normal than what other's may have.

Ultimately, if I had to chose right now, I would say no. She will continue to grow and learn at her own unique pace and I wouldn't want to change her at all. 

Grandma

I've been thinking about the question ......and it's a yes/no answer I come up with. Each child only has his/her point of reference- not aware of the things and events they won't ever experience. They live in the moment, unworried about tomorrow. Unconditional love, freely and honestly given. It's the adults, parents who are so aware of what other "normal" children/people go on to experience. The hard part for me is the thought of providing the everyday physical care needed when parents grow old, planning ways to provide care into that future. That's why I would accept a cure.

Grandpa

Ooh, tough one. There are arguments for both sides of that one! Ultimately, I have to say, I think I would chose the cure. As parents we all want what is best for our kids. We want them to have full,

complete, fruitful, happy and rewarding lives. Looking forward I see many struggles and challenges to be overcome, and with God's help that will happen. Having a handicapped brother, and seeing the frustration for him, my parents, and us siblings over the years, I think if there was a cure for him it would have been better. That said, it is what it is. We do the best we can with we are given, and try to be thankful in every circumstance. Sarah is such a blessing in so many ways, and I'm not sure if she was "normal" I would have seen such a beautiful display of pure love that there was between her and Brenda today in church. There are blessings everywhere if we just see them. Like I said, tough one! Just one old fogey's opinion.

"Love"

To My Older Three Kids

Dear Children of Mine,

I don't know if you will read this today, tomorrow or ever but I wanted to share some thoughts with you about Sarah.

~ I want you to know that even though I'm the mom, I understand what it's like to have someone in our family who has different needs than you. When others look at Sarah because she doesn't answer them. Or when they ask "what's wrong with her?" and you don't know the answer. Because to you and to me, she is just Sarah and we know no different.

~ I know it hurts to have someone laugh at Sarah when she does things differently. And I think it's okay to feel a little embarrassed once in a while. My heart hurts for you when that happens and I pray for God's peace to surround you in those moments.

~ I understand that it's hard to explain that although she's six and a half years old, Sarah behaves and speaks like she's only three. Yeah, that's tough too.

~ I also want you to know how much I appreciate you and your unconditional love for her. She's pretty lucky to be the youngest of four siblings and have you all wrapped around her little fingers.

~ She adores you three. You are the light in her day, the rescuers, the huggers, the cuddlers, the ones she looks up to. I don't think we will ever tire of her asking for a "hug-uppy" and feel her tiny arms wrap around our neck in complete love.

~ There is something wonderful about having a little sister who is staying smaller just a little bit longer than others. It makes it easier to pull her into our laps for those "cungles" that she lives for.

 Throwback to fall 2010

To Joshua: You are the big brother. Her knight in shining armour. She looks to you to wrestle, climb over and play with. And at the same time, snuggle under a blanket watching a movie. Cherish those moments with her.

To Andrea: Sarah's elation when you walk in the door from work is something that delights me and fills my heart with joy. The way she exclaims "You came back!" as though you'd been gone for days. You are her hero. Enjoy those sweet moments when she wakes you up and wants to climb into your bed for a snuggle.

To Arianna: You are the one that she needs at night. She waits sleepily for you to come to bed and then snuggle with her, giving her the feeling of security into the night. She looks for you when you aren't here and is so happy when you're around. I love watching your relationship with her grow. I know it's tough at times because she can't play with you the way you'd like a little sister to, but I can't tell you how much I appreciate when you play with her and her toys. I know how special you are to her.

Thank you three for being the best brother and sisters that Sarah could ask for. She is so incredibly blessed to have you all to love her for who she is. Joshua, Andrea and Arianna, you are each so amazing and I love you very much.

Fall 2014

School: My Thoughts, Views and Our Story

~ Homeschooling isn't just about academics, it's a lifestyle. 

And it's what we've chosen for our kids. ~

When Joshua was five years old, I began exploring school options for him. A friend of ours had been homeschooling their son who was a year older than Joshua and really encouraged me to try it out. The thought of it was overwhelming and so we ended up sending him to kindergarten that fall. The year was rough on him. He was frequently bored and spent much time away from others because he'd be done sooner than the others and would become a distraction. The teacher was fresh out of college and this was her first year. I had no idea what to do either and having the mind-set of "finish what we began", he endured the 10 months of kindergarten. I knew I had to do something different for grade one so I did some research and the next year, he was registered for school at home. He flew through the grade one books that I bought and it quickly became clear that moving at his pace was the way to go.

In the meantime, Andrea was in the same kindergarten that Joshua was. Her time in the classroom was alright but she had her first taste of physical bullying at the young age of five. I wish I was bolder and braver then because I wouldn't have made her endure the year. Why nothing was done, I don't know. Even though that is in the past, some of those memories still rise up in her. She too began the homeschooling adventure when she was in grade one.

The year was pretty busy with a grade two, grade one and toddler hanging out but we did it. Lots of reading together, writing and staying on target with their Language Arts.

I have tried lots of different home education formats. From being 100% aligned with the curriculum guidelines to the opposite end of the spectrum, being traditional to a blended program where the kids went to school twice a week and I homeschooled the other three days. For three and a half years, the blended program worked really well. Arianna was in grade one, Andrea grade five and Joshua grade six. In February of 2011, Doug and I made the choice to take the kids out of the school system and begin full time homeschooling again.

Since 2011, the kids have stayed on target with their math and LA skills. For science we did units on astronomy and social looked at some government and Bible history. Last year was a little different as Joshua was preparing to transition into the local high school. He did aligned courses in math, LA and social and did very well. He didn't do the science course. Was he unprepared for what grade 10 had to offer? Probably. Will he succeed? Absolutely.

Andrea is currently in grade nine. She is doing an aligned math curriculum and her LA skills will come out as she writes essays and reports on the medieval history lessons that she's reading about. For science this year, both girls are doing Anatomy and Physiology together. Arianna is working on grade five level vocabulary, spelling, reading and writing and her social is learning about the geography of Canada. Andrea intends to continue and complete her education at home. I don't know what that looks like today... I'm not looking at next fall yet. I also know her character and work ethic and believe with all my heart that she will succeed in whatever she does. If she choses to change her mind, then that will be okay but for now, I'm sure that she will do her high school years in the dining room.

Homeschooling the kids was not a choice that Doug and I made lightly. We prayed about it often, and still do. Until we feel led otherwise, we believe that this is the best choice for our kids and our family.

July 13, 2014

On Sunday, it will be fifteen years since my life was forever altered. After suffering for such a long time with a sick heart, God called my Mum to her final home in Heaven. At one point I wondered how I would ever survive without her since she was such a vital part of my life. By the grace of God though, I have survived and survived well. Babies have been born, miscarriages occurred, funerals have been attended to, my kids are successful in school and my marriage is still strong.

I wish I could though, just for one day go back in time and retain more of what she was like. I would write about her life, her childhood, her stories. I would record her voice so I could hear say words of encouragement and tell me she loves me. I would take more pictures of the two of us and more with my siblings together. When someone passes away, there are no more photographs. You only have those that you've taken and can hang on to those precious memories. My mum was always behind the lens of the camera so there are actually very few photos of her. One fall day, we booked a photographer and had our family pictures done. My dad had requested an individual picture of my mom and the photographer managed to capture every ounce of beauty that my mum possessed.

She was beautiful inside and out. She took great care in how she looked and was always well made up. Even at the end. She loved her family passionately and took great care of us. Family was very important to her and time together was spent at the lake, skiing in the mountains and one final family trip to Florida in 1994. She always enjoyed a good cup of tea and was willing to drink it with just about anyone who would sit with her.

When I write about my mum, I feel like I write the same things over and over. I want people to know how much I love her and how much she is missed. Even after fifteen years, the dull ache is still in my heart as I remember the woman who was such a critical part of who I am today.

March 23, 1955 - July 13, 1999

In loving memory of Shirley Van Neck

My Mum

Tuesday's Tidbits

It's been a while since I last blogged so I thought I'd give a quick recap of what's been going on here!

• Last Sunday night, we held a grade nine grad party for Joshua (and me) as we successfully completed our nine years of homeschooling together. We invited his grandparents as well as the youth group (and their families) from Calahoo. It was a great evening with lots of laughter, a blessing on Joshua by our pastor and prayers by his grandpas and friends. What a huge blessing that was on us.
• Joshua is into his second week of summer school. He's taking CALM and gym... I think it's a good transition into the upcoming high school year. He's learning to get up on time and taking responsibility for what needs to be done.
• Andrea has been working as a dayhome provider's assistant. She's putting in between 10 and 15 hours a week which is keeping her a little busy but still allowing her to spend a lot of time at home.
• Arianna is just enjoying summer like a 10 year old should. She takes long walks with me, almost every day and loves being outside. 
• Sarah is doing well. She loves playing with "P'ayobil" (Playmobil) and it's been fun to watch her imagination spark with her hours of play. She enjoys being outside but the conditions have to be right in order for her to not be overwhelmed. She doesn't like the wind and too much noise drives her inside. 
• Doug is doing good. He is busy with work and supporting his friendships. He has a desire to build these male relationships and I love seeing his heart at work. The depression days come and go and I again realized that even just the wrong presentation of how I speak can be hard on him. Every day presents itself new and until he's in it, we can't really predict how it will go. It means continually trusting God in this part of his life and leaving it in His hands.
• Me? I'm doing quite well. I have been digging deep into the Word and am feeling God's presence near me. He has become so real to me and the past seven months have been life changing. I've made peace with a few things that have been lingering on my heart and the peace that I'm experiencing now is amazing. God is working in my life as well as the lives of those around me and it's exciting to see His power! 
• I love summer. I put up with long cold winters and I genuinely enjoy the hot summer days. I like walking, being outside and enjoying the sun! The forecasted 30* at the end of this week bring a smile to my face and I am looking forward to it.

Happy Tuesday everyone! Enjoy your day!

Birthday Fun

We began Sarah's birthday with the one and only present she asked for. A wagon. Doug and Joshua assembled the wagon the night before. I wrapped the empty box so she would have something to open but the wagon was just sitting in the dining room. Before she even started to open it, she asked me, "Issa wagon? Issa wagon?" Thankfully, it WAS the wagon. I have no idea how I would try to explain otherwise.

She was barely awake and could hardly open her eyes.

At church, we sung to her and her grin just grew as she knew it was about her! 

We decided that in order to reduce the amount of busyness and stress on her, we'd have a very low-key, quiet afternoon. She's not a fan of cake but she loves the two bite brownies that can be bought. I topped them off with a dollop of pink icing and she was delighted!

Later on in the day, I took Sarah for the maiden voyage in her wagon. She was delighted and when I told her that the wagon needed to stay in the garage, she replied with, "But, the wagon wants to be inna house!" The wagon is still in the house.

Because this was the first year that her birthday has meant anything to her, it was extra fun to treat her in a special way. There came a point in the evening when her little world came crashing down. Bedtime. We had put the toys away, cleaned up after the party mess and began the trek upstairs. I fondly refer to it as the post-birthday meltdown.

I sat with her in her bed until her breathing settled down and she finally fell asleep. As much as I love celebrating my kids' birthdays, I do enjoy the next day when things are quiet and returning to normal!

Happy Birthday Sarah! I hope you had a great day!