Camping 2015

We thought we'd go camping for the August long weekend. We are blessed to have friends who allowed us to park the motor home near the back of their property for a few days. We are equally blessed to have been able to borrow Doug's parent's motor home. This is where the word "camping" is a little grey. The motor home is 40 feet long, has a washer/dryer combo, two pullouts and dining room style chairs. And I brought my Keurig because "camp" coffee did not cut it for me. But, we did cook all our meals outside and as long as the weather cooperated, we ate outside as well.

 Doug was cooking pancakes and Arianna held up an umbrella so they wouldn't get too wet.

There was a whole lot of relaxing going on as well. The hammock was well used and we even had a little pool to cool down in as the temperatures were in the low 30's for much of the week.

Campfires were a regular part of our time as well and I think I've eaten enough hot dogs and s'mores for quite a while now.

 Our hosts got a kitten while we were there and Arianna fell in love with her.

Our hosts allowed us the use of their quads while we were there. They have acres of trails that the kids, Doug and I thoroughly enjoyed riding on. Sarah went from being terrified of the noise from the quad to asking for rides on it. Once we realized she wanted to go riding, we did get her helmet. I was so proud of her for conquering that fear.

Naps happened too. 

 

Our weekend away turned into a full week. A few trips back home were made as we needed fresh clothes and some extra food. The older two kids and Doug spent a few nights at home as they had to work during the week and it was easier for them to be at home. Arianna, Sarah and I managed to stay out for the whole time though. Sarah loved being there. Even one morning while it was raining, she was running around squealing and laughing the whole time. She loved being outside and I think she ran all. day. long. Slowing down just long enough to eat a few bites here and there and then just as quickly was off to the next adventure.

 Sarah had a swing set to play on and I'm sure she spend most of her day on it.

For some reason, my older two thought filling their mouths with marshmallows would be a good idea. I suppose it was- if you're a teenager.

Lots of this happened. Sitting by the fire and doing much relaxing.

Our last trip as a family was in 2012 when we drove all the way to Alabama. This was much different as we stayed in once place, enjoying the space that we had. It was as though we had an entire campground to ourselves and it was a much needed time away. I'm so thankful to my in laws for the use of their motor home as well as our friends who allowed us to hang out on their property for a week. What a blessing that was and many great memories were made. 

This Week (A Raw and Real Post)

Lately one of Sarah's activities includes taking apart her toys. I mean she's taking the hair off her Playmobil people and disassembling every. single. item. And this week, it brought me to the brink of frustration. Frustrated that she doesn't play with toys for their actual play value, rather getting enjoyment out of taking them apart with no interest or desire to reassemble them. Why? I have no idea.

It was on the weekend where I cried to Doug after we had gone to our room for the night as the grief loomed over me once again. I was so disheartened that she can't or won't use the toys appropriately. It makes my heart ache as I watch her play in such a toddler-like fashion. I was angry that things have been bought for her and she isn't able to use them for their purpose. I ask myself many times over as to what would be a better play thing for her? What would she enjoy playing with? And nothing comes to mind. I simply draw a blank. She likes playdoh but can only do that for a certain amount of time. She loves playing in water but I can't have her sit in the tub all day either. When I see kids her age and younger exceeding her academically and developmentally I am saddened by it once again. It means that homeschooling her requires my imagination, creativity and time so I can create a unique to her curriculum that will help her learn about her world.

I have learned (and am still learning) that I can feel this way. It is okay for me to be hurt and to cry over this stuff. I occasionally feel helpless and that transforms into guilt. But I am doing the best that I can for Sarah. I am a good parent and the best one for her. I also have to remember to separate Sarah from her diagnosis's. Cerebral palsy, microcephaly and developmental delays are what Sarah has, not who she is. These have become part of our "normal" and are simply a part of our lives now. We are learning to adapt to her and her needs, like needing to go to a different park because there are too many kids already or because construction crews are running their loud machines close by. I am grateful for the flexibility of a friend who made it so simple to pack up and find a new place to play.

After I let it out, Doug reminded me of the wonderful things that Sarah does. By simply taking her camping last week, I gave her the "best day ever" every morning. It takes a drive to a park with sand to delight her and make her day complete. And when the day comes to an end and her teeny little arms wrap tightly around my neck I am reminded once again of the amazing gift that she is.

As Doug said to me earlier today, perhaps those joys are made all the sweeter because they come in spite of, and likely because of who God made her to be.

Sixteen Years

Every year around this time, I consider to myself "I don't think I'll blog about my mom this year." You see, there's nothing new I can ever write about and I wonder if anyone really wants to hear the same thing again. So I write for myself. If no one ever were to read this, that would be okay because this is one way that I am able to keep her memory alive in my heart. The memories are still there, thanks to photo albums, cook books and a gold heart shaped locket that once was hers. But, the pictures of her are frozen in time, never changing or aging as we have been doing. 

Like I wrote last year (and now, the remainder of this post is from last year), I wish I could, 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 mom 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 mom possessed.

She was beautiful inside and out. She took great care in how she looked and was always well made up. Even till the very end. She loved her family passionately and took great care of us. Family was very important to her and we all knew it. 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 mom, 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 sixteen years, the ache is still deep in my heart as I remember the woman who was such a critical part of who I am today. I often wonder what would she think of me and how I'm doing things? I can only hope and imagine that she'd be delightfully proud of me, Doug and our kids. 

As I finished writing this post, Sarah looked over at this picture and said "Dat's you Mum!" When someone says something like that, I take it as one of the highest compliments. 

Letting Go

I think the very first time I can recall of letting one of my kids "go" was as a newborn and having someone else hold them as I tend to be a bit of a hoarder when it comes to my babies. Other moments that I can recall letting go are:

• when their tiny hands slip out of mine and they take their first steps
• when they toddle into a Sunday School classroom and are "okay"
• when they master a two wheeler bike and venture out on their own
• asking them to get the mail for me
• allowing them to go to friend's house without me
• permitting the first sleep-over and believing they'll do fine
• watching them walk into a school for the first time, even if it is high school

The most recent phase of "letting go" occurred yesterday when Joshua received his driver's licence. He is now legally allowed to drive a vehicle without someone else with him. As I sit here writing this I'm trying not to obsess of his whereabouts with my friend finder app. My prayers have suddenly changed and I have a much deeper desire of asking God to protect him and watch over him. Trusting that he is in God's hands and learning to let go has been my biggest lesson over the past 24 hours. 

Last night was the first time that Joshua went out on his own, in his own car. I gave him a curfew time and trusted him to abide by it. I know he went to a friend's house but after that he just went cruising. I didn't know where he was and I just kept placing him in Jesus' hands. Yes, he came home on time and in one piece and then I was able to sleep soundly. We've entered a new era of parenting with two new drivers in the house and I'm finding I spend much time on my knees is prayer. Asking God to fill Doug and I with wisdom and praying for His protection over our kids. 

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. 

Swimming

It has been a very long time since I took Sarah to our local pool. Possibly as much as a couple years. My reason? The last time we went, she only wanted to sit in the hot tub because she was so cold. She had no desire to play in the water and due to her balance issues, it wasn't a relaxing time for me anyhow. Add to that she is so quickly overstimulated by crowds and loud noises, she's often in a distressed state of mind.

Today I had the opportunity to go to the pool again. It was with some hesitancy but I decided to give it a try anyhow. After she got used to the water, she really enjoyed herself. She used a pool noodle and then after a bit, I put a lifejacket on her. I helped her float and get used to the feel of the buoyancy of the water. She was then able to walk around and enjoy the pool with her friend and releasing me from a "small amount" of nervousness. She only had one incident which resulted in breathing in a bunch of water, causing a few moments of stress for her and I as she struggled to breath again. After a quick hug, she was good to go again. We took off the lifejacket near the end of our time and she enjoyed walking around figuring out how to manage the feeling of water.
I'm pretty sure I'll be doing it again- it went much better than I anticipated and I'm so glad I went.

Four Years Ago Today

Four years ago today I wrote this blog post.  This was the first day that I blogged about Sarah's delays, shortly after a speech assessment. Looking back, I can still remember how terrifying and alone I felt. I was in a state of shock and even numbness as I began to process and understand what this change meant for us. I was suddenly part of a new group of people, a wonderful group who are parents of special kids. Special because they transform us into a person we never knew we could be.

Most of the time, Sarah's delays are a non-issue. She only knows her world as it is- there was no loss of anything for her. She lives in the moment and and lives to love. She does everything with passion, whether it is playing with her toys, eating her favorite foods or snuggling with me at bedtime.

Even though we have learned {and are still learning} to work with Sarah at her own unique level, there are brief moments of grief that still rise up in Doug and I. When we see kids her age and much younger surpass her in skills such as reading, writing, playing and speech, our hearts hurt for her. Although she doesn't know what she's missing, we do, and sometimes we even experience pangs of jealousy. It's not easy to admit that but, it's true. I'm thankful those moments don't last long but they exist.

The past four years of raising Sarah has changed our lives drastically. All the ideals of what she "should be" doing are put away. I still think of them but nothing I do can or will change who she is or how quickly she catches on to a concept. Having Sarah in our lives has put much more value on loving and understanding her regardless of her cognitive development. And yes, I still experience moments of grief and sadness as I realize for the umpteenth time of what she's not doing. Over time, those moments are becoming fewer and farther apart and I am rejoicing in the small victories more often. This is a journey that I never dreamed of taking but I am learning to enjoy "Holland".

WELCOME TO HOLLAND

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

c1987 by Emily Perl Kingsley. All rights reserved

My "Holland" isn't a vacation or holiday. It's a life and we're living with this detour for the rest of our lives and that's okay. Sarah brings a light into our day like no one else can and she is so deeply loved by everyone she knows.

April Update

I feel like I haven't done much blogging lately- in fact, it's been nearly a month since my last post so I thought I'd do a little update.

Well, I'd like to think that spring is finally here. We had one more snowfall a few weeks ago but that's long gone and now the days are full of sunshine and outside time. Living in Alberta, we put up with a lot of winter. It can snow as early as October and last until the middle of April. Thankfully, it seemed (to me any how) that it was a slightly shorter winter than usual and I am thankful! 

Since the beginning of March, Doug has been working very hard, spending long hours with his work and in addition to a few weekend trade shows, he also spent two weekends away for church related stuff. It has been a long six weeks for us but we survived. Due to the fact that he'd been so busy and consequently physically and emotionally exhausted, as a family, we made the decision to spend Easter at home with just the six of us. We enjoyed suppers together, hung out at home and only ventured out for a Good Friday and Easter Sunday church service. This "staycation" was exactly what our family needed to recover. This busyness also meant that Doug's depression seemed to be more evident than other times. These lows that he has are really hard on me as his wife as my heart deeply desires him to not fight this battle. Through friendships and prayer times, we were able to get through this as well. In fact, the other night he said that there was an improvement on one of the "levels of depression" scales he uses which showed less symptoms than before! We can be so thankful for that!

The older two girls only have another 4-5 weeks of school left before we finish of this year. We are in the process of registering them for the fall. Andrea will begin high school online and attempt an accelerated program which will allow her to graduate in as early as two years. Of course, we always maintain a flexible mindset and she can always keep going for the third year if she needs. She's excited to do this and from her determination, I'm sure she'll succeed! Arianna and Sarah will continue with our traditional style with Arianna in grade 6, with math being grade 7. 

Sarah is Sarah. Her speech is coming along nicely, even her pediatrician and other friends have noticed it. Those improvements are really exciting! She has a really hard time holding a pencil properly and with a relaxed hand. She grips it tightly and therefore her ability to color or write is compromised. I will be getting in contact with an Occupational Therapist in the next little while to discuss this issue. Sarah's EI coordinator from Early Intervention came by for a visit one evening and was able to offer me some ideas as well. The iPad is a great tool for tracing letters and numbers even though they don't make much sense to Sarah yet. Although, the other day she held up two items and said she had "two of dem", so I know she's starting to get it. 

In addition to some of her positive improvements, we've also been going through a bit of a frustrating time with some of her behaviours as of late. She has a good sized collection of Playmobil and I was noticing that she was disassembling every. single. piece. This has not been a lot of fun to clean up so for the time being, it's being put away. She also tends to look for scissors and cut any kind of paper she can. We are now being careful to make sure they are always up high. As I was going through one of my journals, I noticed some lovely sharpie art work on one of the pages. Now that we can be outside more, I'm hoping that her need to look for trouble will decrease!

Joshua is in the homestretch of finishing his first year of high school. He has another eight weeks or so until exam week and then he's done. I think many good life lessons were learned this year and I know he's looking forward to being finished. He's also bought himself a bass guitar and has begun taking some casual lessons on it. He usually enjoys the bike ride to and from school with his friend and I think it's a good time for him to decompress after a long day.

I am doing fine. I still experience heart palpitations but I think(?) they are mostly related to stress. Now that all my testing and waiting is over, it seems that there has been a decrease in the frequency of them. This afternoon I met with my cardiologist... and the results are:

1. I have about 2,000 extra heart beats in a 24 hour period. (That's a lot!)

2. Normal heart function is 55-70%, abnormal is below 50%. I'm in the middle of that. 

3. I get to have another Holter test done in June. 

4. He has no answers to why my heart races. 

This round of tests was to be set up as a baseline. I will redo everything again (MRI, Echo, blood work, EKG, Holter) in a year and then I'll be able to see if anything has changed for better or worse over the year.

Well, that's about all that's going on here, have a great weekend. :)

Pediatrician Appointment {03.19.15}

Sarah recently had another doctor appointment. This was just a routine follow up where her growth is plotted, ensuring she's still growing. Although she was a little anxious while we were getting there, the appointment went amazingly well. She stood where she was supposed to in order to be measured, was so chatty that the doctor was very impressed and not a single tear was shed. What a difference this was compared to a year ago!

The good news is that she is growing in height and weight. She is 43 inches tall and 37 pounds. She is now on the percentile charts! Her head remains the same at 46 centimetres which has been this size since December 2013. On a growth chart, she is now almost -4 units below standard deviation.

An average sized head would be closer to 50-52 centimetres and although a 4-6 cm difference doesn't seem like much, it is a pretty big gap when we're talking about head sizes. Unfortunately, there is really nothing I can do to make her brain grow.

After we finished at the doctor's office, we headed to my sister's where Sarah and Rosie played and watched a movie together. It was a nice way to end the morning.

Update on Me

Late last summer I went to to see my doctor regarding some irregularities in my heart beat.

I had some routine lab work done on the 9th of July. I wasn’t worried much until the next day when the doctor called and said I needed to come in and discuss my results. I just thought and hoped that it would be something like my thyroid or a vitamin deficiency. The next day, as I was getting ready for the doctor appointment, I heard a voice in my head say “You will have something to say about this. Believe in me.”  

The doctor said my blood work was normal and fine which could only mean a heart issue. I received the news that I have something called multiple PVCs which means my heart has a lot of extra beats in the normal rhythm. In a person with no heart issues, this wouldn’t be a problem or even exist, but with my family history, I needed to get checked out further. Friday afternoon brought a friend over and we shared a coffee and prayer time on my back deck. That evening I wrote in my journal “I can do all things through Him who gives me strength. And my God will meet all [my] needs according to His glorious riches.” Philippians 4:13 & 19. I was confident that God had it and I didn’t need to fret about it. So far, so good. Later that afternoon I received an encouraging text that said, “He is all that He says He is. Lean on Him, listen to His heartbeat. Believe in Him! He has good plans.”

Early the next morning, was Saturday and as I was doing my devotions, I heard the same voice whisper “You’ll have a story to tell.”  I kept telling myself that I needed to believe I could be healed. I had been having a few really good weeks. God was good to me. Then this heart stuff came. Had I become comfortable in my faith? Comfort would rob me of my dependency on God and in my trials, I would need to turn to Him so He could answer my prayers and receive the glory. 

That night, I believe I suffered from a panic attack. My heart began to pound and race, my blood pressure read numbers higher than Doug’s were, my chest felt tight, I was light headed and even in my 30 degree bedroom, I felt cold. I don’t know how long it lasted but it was close to half an hour. Although my heart was still racing I managed to fall into a restless, fitful sleep. I told Doug the next morning what had occurred and he lovingly encouraged me to tell him sooner if it happened again. 

My cardiologist began a series of testing which included a stress test. If the goal was to stress me out, I was successful. Within 4 minutes, my heart was up to 170+ beats per minute and the test was stopped. During that, the doctor saw multiple PVC occurring and so began the next series of tests, all which included much waiting. 

On November 19, I went in to get hooked up for a 24 hour holter monitor test and on December 16, I went to have a cardiac MRI. 

When I saw my cardiologist in January, I was told that the MRI shows no evidence of a heart attack and all my valves look good. I have an impaired left ventricular function which means that the muscle is not as effective at passing on the blood it receives as effectively as you would expect. There is a comment that the right ventricle is normal and the difference between them is only 4%. This says that my heart function is on the low end of normal. The normal range is from 55-70% and mine is functioning at 54%.

The big problem with not being able to squeeze out as much as has been squeezed in by the atrium is that it then transmits the leftover pressure backwards, from the ventricles back to the atria back to the vessels that supplied them. What that looks like is increasing breathlessness if the blood backs up to the lungs. 

The other issue that I have is an enlarged atrium which gives blood a place to slow down and become turbulent. This can lead to clots which can then cause strokes and blood clots in the lungs. This is generally not a problem until the atria are very dilated and I could potentially develop an arrhythmia called atrial fibrillation.  In my case, my valves between atria and ventricles are intact and function well.

In the end, this study does not explain the extra beats. The muscle walls of my heart are normal size and thickness. It was also determined that I have needle phobia which meant that the injection of the dye part of the test was unable to occur.

Because I still find myself breathless when I try to sing or the fact that I can only walk at a certain pace, my cardiologist had sent me for some x-rays as well as a lung functioning test.

The results of that showed nothing out of the ordinary which is neither good nor bad, just inconclusive. 

On January 22, I went for the final test, an echocardiogram. The results of that indicate that my valves are good and although my heart functions on the low end of normal, it's doing alright. So, it's not great news, nor is it bad news. It's just what it is. My experience says that stress and caffeine are the triggers and so if I can stay completely stress free, I should be good. I'm thankful there's nothing 'wrong' with my heart. I'd still love to eliminate the bouts of racing and such but I will just try and learn to cope with them.

The past few months have taught me great lessons in leaning on Jesus in my weakest moments. I am so grateful for the people who have walked with me, faithfully praying and frequently checking in. I am so blessed by the community of people I have surrounding me and my family.

Have a wonderful day!

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!