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"

Sunday's Song {02.08.15}

To the river I am going bringing sins I cannot bear
Come and cleanse me, come forgive me Lord I need to meet you there

In these waters, healing mercy flows with freedom from despair
I am going, to that river Lord I need to meet you there

Precious Jesus, I am ready to surrender every care
Take my hand now, lead me closer Lord I need to meet you there

Come and join us, in the river Come find life beyond compare
He is calling, He is waiting Jesus longs to meet you there
He is calling, He is waiting Jesus longs to meet you there

Precious Jesus, I am ready to surrender every care
Take my hand now, lead me closer Lord I need to meet you there
Take my hand now, lead me closer Lord I need to meet you there

Update

The year 2015 is well under way and I'm doing a fine job of keeping busy.

Earlier this week I cooked and created 14 freezer-able meals which means for two weeks I don't need to really think too hard about what to have for supper. I take it that day's supper to thaw, put it in the slow cooker or oven and then I'm done. It's been a great way to reduce some of the late afternoon stresses that come when trying to decide what to feed the family. It also comes in handy when I need to play taxi driver and chauffeur my older kids to their various destinations.

Andrea and Arianna are doing very well in their schooling. They are both quite independent and motivated which makes for pleasant days and quick accomplishments of what they need to do. Andrea continues to work part time at a day home and we love that homeschooling allows this flexibility. She is also keeps busy with two worship teams, one of which she is the lead worshiper. Although there are weekends where both teams require her, she does a pretty good job of balancing the two. Arianna loves making videos with her iPod and has become quite good at what she does. She's also begun reading for pleasure which makes me very happy! Like Andrea, Arianna is becoming a good piano player and growing in confidence with her vocal skills.

Joshua finished his first semester of high school and began the second this week. Unfortunately because his core courses are not semestered, only his options changed and he's still pushing through. One of his new choices; German is his most enjoyed at the time. He still works at Wendy's on Saturday afternoons and this part time job has allowed him to purchase his first car.

Sarah continues to do things at her own pace. Because she is homeschooled and there's no extra support for special needs kids, I am required to look for find, find and create my own curriculum for her. This is not always an easy task for a main reason: I don't really know where she is developmentally. If I had to guess, I'd wager around three years old. Although in many areas, she is moving forward, I see other areas that have not really progressed. Her speech is coming along nicely and I'd guess that other people can understand her almost 50% of the time. The rest of the time, I need to interpret and there's also moments where even I don't understand her. Sometimes her brain knows what she wants to say but her mouth can't come up with the words quickly enough. This will lead to stuttering and at times giving up what she wants to say. I had purchased colored craft sticks and really wanted to find something to do with them. I found patterned printables online but the colors didn't match the sticks I had and the sizes didn't match up. So I took my own craft sticks, and using our 3D printer, I set up the sticks in various patterns and printed them out. The sizes and colors match exactly! I then laminated the sheets and they were done.

The other thing that Sarah began this week was her first "school" type book. I wasn't sure how she'd do with it but for the most part, I'm very impressed. She seems to understand that each object gets colored despite her not being able to stay in the lines. In the moment she remembers the color and we talk a lot about it but it doesn't seem to stick with her for very long. The book quickly moves into shorter lines and the alphabet so I'm not totally sure what will happen when we arrive at that junction. 

Most of Sarah's learning is still coming through play, iPad apps, and sensory bins. Occasionally I need to step back and take a deep breath to remind myself that what she is doing is okay. 

All in all, 2015 is starting out alright. We've managed a few colds (Sarah's lasted 3 weeks) but other than that have stayed quite healthy and I hope to keep it that way.

Enjoy your weekend!

Cookies!

Today I was experimenting with an older recipe of mine and after all was said and done, they turned out quite well. I replaced the white flour with almond flour and oat flour and replaced the sugars with coconut sugar and cane sugar.

So the recipe I used today is as follows:

Crackerjack Cookies

1 cup of butter

1 cup of cane sugar (to replace the white)

1 cup of coconut sugar (to replace the brown)

2 eggs

2 teaspoons of vanilla

1 cup of almond flour

2 ½ cups of oat flour (simply oat flakes ground in my Vitamix)

1 teaspoon of baking soda

2 cups of oats

2 cups of rice crispies

Drop by spoonfuls onto a cookie sheet (I lined mine with parchment paper) and press down slightly.

Bake for 10-11 minutes in a 325* oven. My cookies looked quite underdone when I took them out but they finished their baking while cooling on the cookie sheet. This made 50 good sized cookies.

A few notes about what happened today:

• I think I only needed ¾ cup of butter, rather than a whole cup but I'll play with that next time
• If I had used less butter, I would have needed less flour
• Because almond flour isn't a very dry flour, it took a lot more oat flour to reduce the wetness of the dough
• I also could probably cut the amount of sugar down as well, but I didn't want to experiment with too many variables at the same time

(A fabulous cookie jar from my sister!)

Welcome to 2015

A new year is now upon us and our family sure ended 2014 in a great way. I have no idea how to condense a super fun week into a blog post but I'll try.

On December 25, our friends from Birmingham, Alabama flew up to see us for a week. Our time was spent introducing them to our family and friends as well as all the wonderful things that a snowy province has in store. On the 26th, we went sledding at a friend's acreage and they were amazed that they were walking on a frozen lake. The kids spent a lot of time with Arianna in the various yards enjoying the cold, the snow and the activities that we do here. 

The girls after church

One of our excursions included a trip to West Edmonton Mall which at 5.3 million square feet, the Mall is the size of a small city and is accredited as a zoo.
West Edmonton Mall is home to more than 800 stores and services including nine world-class attractions, two hotels, over 100 dining venues, the widest variety of one-of-a-kind retailers, and entertainment for all ages. It also holds the record for the world's largest indoor amusement park and wave pool. The waterpark was the main event of our day in addition to tackling some shopping during the busiest week of the year. We hung out there for a few hours and yet barely scratched the surface of what we could see.  I found out that it would take nearly 72 hours to check out every single store in the mall. This was also the evening that us adults took the time to have a childless dinner at one of mine and Doug's favorite food places. 

 James. Loved. Joshua.

The next day we loaded up into a 15 passenger van and headed for Jasper, home of our Rocky Mountains.  The day was clear and we were treated to a spectacular view of the snow covered caps of these magnificent rocks. We walked around the town of Jasper for a while, ensuring that our souther guests had a true experience of walking around in the cold. With a bone chilling wind to boot. Our hotel for the evening faced Pyramid Lake and was a spectacular view to wake up to. Doug was a wonderful tour guide as he took us down the Icefield Parkway with our main destination being the Columbian Icefield. The mountains did not disappoint us as Scott and Lelia experienced the greatness of walking on a mountain while seeing a glacier in the distance. 

 This lake was unbelievably beautiful - pictures don't do it justice

 Waterfalls freeze too

 This was the lake off our hotel

 Just about on top of the world!

 The Athabasca Falls

 The Columbian Icefield. It was getting cold and windy!

 Tourists? I think so! :)

One final group shot as we prepared to say good-bye.

Their flight was to take off at 6:00 on New Year's morning so our final evening was spent gathering up their belongings, doing a final load of laundry and helping pack their stuff. This was our fourth time since 2007 that we've gotten together and each time has been a lot of fun. We've made a lifetime of memories and I can't wait until we meet again!

Three Years Ago

It was on this day in 2011 when Doug and I sat in the pediatrician's office waiting to hear the results of Sarah's most recent MRI which had been a couple weeks earlier. I can remember entering the room and expecting or hoping that we'd be told that the tests showed nothing abnormal. I can also recall the shocked and slightly stunned feeling when he delivered the news to us.

This is what I wrote three years ago:

"Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", which is likely the cause of her balance issues. All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy."  

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

(Information taken from this SITE)

So, back to present day. Where are we now and what have we learned? Over time, the shock wore off. I was reminded by family and friends that the label doesn't change who Sarah is, nor does it define her. We went through two and a half years in the Early Intervention Program until Sarah turned five. They were memorable times and I learned a lot about how Sarah was and is developing. 

Sarah experiences most of the symptoms that CP displays. Her learning is slower than others which is also due to the severe microcephaly, but that's another post in itself. She has a very unbalanced diet which is high in carbohydrates and low in meats and veggies. It's not for a lack of effort on my part that's for sure. Her muscle tone, movements and motor skills are also compromised because of the cerebral palsy. 

I am thankful that she knows no different though. What Sarah lacks in many skills, she excels in others. She can love in ways that even I can't comprehend. She is loveable, charming and a delight to be around. Her laugh is contagious and she knows how to make anyone smile. She loves going to church and the people there have become like her second family. She is so eager to play outside with her friend Mr. Bruce and she even brought her snow clothes to church on Sunday so he could take her out. She loves people deeply and many of them have a special place in her heart.

As for me, there are occasionally moments and even days where I find myself hurting inside again. It's tough to know that she likely will not ever meet her peers' developmental level and always be behind. In fact, that gap will continue to get larger as time goes on. Watching her alongside other kids her age or even younger is hard at times. 

But, I am so thankful for the encouragement of friends and the love and support they provide. It's been quite the journey so far and I look forward to seeing where we continue to go.

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

Sensory Bins

The other day I came to the re-realization that there are very few supports for Sarah and myself since I chose to homeschool her as a special needs student. I began to do some looking online at something called "sensory bins" which is a bin that is filled with pretty much anything the imagination can conjure.

So... I bought an e-book that talks about what to use as the base:

1. rice (colored or not)
2. pasta (cooked or dry)
3. popcorn kernels
4. oats
5. flour
6. cloud dough
7. dried beans
8. shredded paper or Easter basket hay
9. water
10. sand
11. dirt
12. flour
13. cereal
14. marbles
15. water beads
16. cotton balls
17. shaving cream

Really, the list is endless... My first bin that I created was with rice. Dyed red. This rice bin kept Sarah occupied for 4.5 hours! Once the base is determined, you can add whatever you'd like to engage their minds. A lot of the ones you'll find online are very thematic and I may go that way later but for now, I'm doing Sarah's purely for the play value.

Then I found a recipe for cloud dough which is 1/4 cup of vegetable (or baby) oil and 2 cups of flour. I didn't have an oil based food dye so mine didn't color. But that's on my shopping list! :) 

Even Arianna got in on the fun!

Then I began to dye popcorn!

And chickpeas!!

It's only been two days but so far it's kept her busy for hours! I can't wait to use these super colorful items and expand on Sarah's play time! 

(ALL methods of coloring were found online, none of them were my own idea)