Pediatrician Appointment {03.03.16}

March is cerebral palsy awareness month. This term didn't mean much to me until the winter of 2011 when after an MRI showed that Sarah had CP which was likely caused by oxygen deprivation while I was pregnant with her. I had heard the term before but on November 25, it became personal. I was the mom of a child with a diagnosis and I now fell into a whole new category of "special needs". 

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.

Cited from this LINK.

Sarah experiences many of the symptoms of cerebral palsy such as motor skills (fine and gross), bladder and bowel control, eating issues (very sensitive to certain textures) and learning delays. A lot of the issues also come from the severe microcephaly, causing her head to be considerably smaller than those of her peers. In fact, a few days ago I bought her a new sun hat - sized for 2-4 year olds and it's still big on her. She has been wearing the same hat for years because her head has been growing at such a slow speed. Although she could have used the same one as the past 3 years, I decided it was time for a new hat anyhow! 

Earlier this month Sarah had her six month check up at the doctor's office and as always, I like to keep a record of her growth patterns and such. 

She now:

• weighs 42 pounds (3rd percentile)
• is 3 feet, 10 inches (4th percentile)
• has a head circumference of 47.6 cm (-3.2 standard deviation)

The visit to the pediatrician went fairly well until the doctor attempted to take her blood pressure. For some reason, that terrifies her and so we skipped that part of the exam. Everything else seemed fine and we were on our way after that. 

She's still growing and developing at her own rate. I think she's still pretty little for a 7½ year old  and I think the kids, Doug and I still like that she fits in our laps so easily yet. I know for a fact that the other three kids couldn't snuggle the way she does. 

This picture was taken the week after we were at the doctor's office when Sarah, her sisters, brother and I were all down with bad colds for a week. As much as I don't like her being sick, it was a special treat to have her nap in my arms nearly every day!

Refiner's Fire

I recently was a reading a book and one of the questions asked was "What is my duty before the God who loves me?" This took me a while to figure out but I realized that I need to love people more and fear them less. I am easily intimidated by others and I tend to make people bigger than God. It's taken me some time, but I can now see that God is the one I need to look to for fulfilling my needs. I was created in His image and to image God means I must represent Him for His glory. I need to be like Him in every way.

For a long time, I had been relying on people to fill my cup of "need". I believed that I needed them to fill me with encouragement, love, support and friendship to make me feel good about myself. No where in the Bible does it say that I need to receive love so I can feel better about me. I was desiring these things not for God's glory but for my own pleasure. Jesus needed to break my cup of needs rather than allow it to be filled. Those needs had been growing and I was seeking people to fill them and consequently, I wasn't asking God to fill me up. Little did I know that I was about to enter the Refiner's fire. Through a series of events, I realized how unhealthy that was and in the process, God brought me to a place of brokenness and pain. A pain that reached my core and I can now see how that pain was His refining fire.

A refiner's fire does not destroy or consume, rather it refines and purifies. It melts down the metals, separates the impurities and leaves the silver and gold together. God is the refiner, the fire that purifies me. But, it is still a fire- hot, fearful and painful and although it comes at a cost it also has wonderful hope. 

I am tested because God loves me and when trials come my way, I know that I am being refined in Christ and I need to trust in Him. Through it all my character is being developed and I have hope of my salvation and I will not be disappointed in His love for me.

So what is it like in the the Refiner's fire? Honestly, it hurt. A lot. Over the past five months I have cried many tears, asked many unanswered questions and spent many hours asking God why. But as I've come through this fire and I continue on the path of following Jesus, I know that if there is no pain, there is no gain. I have learned to lean on the steadfast faithfulness and love of my Father as I trusted Him to carry me through. I've also realized that I "need people in my life in order to accomplish God's purposes so that I can reflect his glory" (Welch, 164). If I continued to think that I had this "cup" that needed to be filled so I could be happy, I wouldn't be able to fully be showered in God's love for me. The path of His love is not easy or without suffering but it will leave me overflowing - my cup that He fills cannot begin to contain all that He has for me.

I am now a stronger person, a little more confident in myself and am working at loving people more than I am needing them to fill me. I can look back and thank God for the lessons I have learned and I will continue to walk in His path. I also know that there will be many more fires to walk through in my life because God isn't finished purifying me yet. I need to be continually refined because I will always have impurities that need working on but God is good and I know He has wonderful plans for my life.

So back to the first question of "what is my duty before God?" It is to love people as God loves me. To show them grace and mercy as my Father has shown me grace and mercy. To show them the love of Jesus through me. I can see that the way that I need others in my life is different. I need them so that I can glorify God. To be taught and counseled, to ask me the hard questions and for me to do the same for them. His word encourages us to love God and love other people and that's what I am striving for.

 

40 Years Old

I have been waiting for this birthday for quite some time. I'm not sure if I think something great and wonderful will happen or what, but I'm really excited for this one. So, I've decided to do a post listing 40 things which you may or may not know about me. Feel free to ask me about any of them if you'd like!

1. I am the oldest of four kids in my family.
2. Princess Stephanie of Monaco shares my birthday. Odd little fact but I've known it for years.
3. I met, dated and married my first boyfriend. He's a pretty awesome guy!
4. I do not eat eggs, nuts or onions. I do eat peanut butter and french toast.
5. I am the mom to four kids on earth and three in Heaven.
6. Even though I am the oldest, I am also the shortest of my siblings. Why or how I received no "tall" genetics is beyond me.
7. I love yellow roses. Or white roses.
8. Summer is my preferred season- I barely put up with winter.
9. I have been alcohol and caffeine free for 16 months.
10. The above is because I have a few heart issues that I'm keeping an eye on.
11. I have never lived outside of Spruce Grove and I have moved five times in my life.
12. Up until 2.5 years ago, I had attended the same church since I was 2.
13. I had no idea I would love a little country church as much as I do. The family-type community spirit that I feel there makes Sunday a very important day of the week for me.
14. I didn't know how much God could change me once I was really ready.
15. My oldest two kids are 16 months apart and the girls are all four years apart.
16. I am the wife of an amazing, hard working man, which allows me to live my dream of being a stay at home mom and homemaker.
17. My mom died when I was 23 and my newborn baby was only 9 weeks old. Her passing was an event that changed my life in many different ways.
18. I love to eat chicken. Plain, in a sauce, on pizza, in salad... any way. I don't really like ice cream but if you offer me chocolate cheesecake, I won't say no.
19. My name is Stephanie. NOT Steph or any other form of it. I will respond to a shortened form but I don't like it. At all. Doug, my sister and my dad all have another nickname that they use. But that's just for them.
20. I can't jump. Please don't ask me to show you, just trust me.
21. Other than Sarah, I am also the shortest in my family.
22. I am the mom of a special needs daughter.
23. I have always been a fan of the Royal family.
24. Doug's parents have made wonderful in-laws. I am blessed.
25. In the winter, our bed has fleece sheets. I'm so thankful my wonderful husband puts up with them for a few months of the year.
26. I love to walk outside but I'm a fair-weathered walker- winter isn't for me.
27. My hands and feet are almost always cold. (see #26)
28. Since was young, there's always been a dog in our house. After our last one got sick with a brain tumor and we had to put her down a few years ago, I have no real desire to have another one for a very long time.
29. I'm not very adventurous- I like things to be predictable.
30. I love to spend time in the kitchen baking for my family or for others.
31. The past six months have stretched and challenged my faith in ways I couldn't have imagined and I believe I am a stronger woman for it.
32. I have a degree in Early Childhood but didn't really have a lot of time to use it since I became a mom fairly soon after we were married.
33. I have home schooled our kids since 2005. I think that makes me a veteran now.
34. I love books. Bookstores and libraries are my happy place. I need more bookshelves.
35. I never drank coffee until I was pregnant with my second. Now, coffee is my favorite thing to drink. Decaffeinated of course with cream and sugar.
36. I have read the Bible cover to cover once. I'm working on my second time through it now.
37. Our family has gone to Alabama twice. In a motor home. I keep saying when we go back, I'd rather fly.
38. I love people very deeply. This isn't always an easy thing but it is rewarding. I make close friendships and value and treasure them. I hurt when they hurt and rejoice when they do.
39. Purple has always been one of my favorite colors. I don't wear it or anything like that- I just like the color of it. 
40. I love my family with all my heart- I am doing it to the best of my ability and to glorify God in all I do!

I hope this next year (and beyond) is one that I can look back on and see how God has worked in my life. I want to strengthen and deepen my relationship with Jesus and I am excited to see what some of His plans for my life are.

 Psalm 139: 13-16

 ¹³ For you created my inmost being;
    you knit me together in my mother’s womb.
¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
¹⁵ My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

So, this is just a small list of things and people that make me who I am- wonderfully created by my Heavenly Father!

Another First

As special needs parents, sometimes the "firsts" that we wait for take a really really long time. 

Today, Sarah was so excited to go outside and play in the snow. She found all the necessary gear that she needed and got herself dressed. Other than needing me to put her coat over the snowpants, pull on her mitts and boots, she managed to do the rest on her own. When I was looking at her all bundled up, I had a short moment of aching in my heart. She is 7 ½ years old and just starting to get dressed by herself. Those thoughts were quickly snuffed out as her beaming, proud face grinned back at me and she said "I did it all myself!" She did it. All on her own. It's moments like these that I'm so thankful for because they can outweigh the times that are discouraging.

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!

Thanksgiving Sunday 2015

In everything give thanks, for this is the will of God in Christ Jesus concerning you.

I Thessalonians 5:18

The bible tells us to give thanks in everything. The good, the bad- all of it. Quite often though it is hard to find gratitude in the everyday, mundane things of life and especially when things aren't going as smoothly as we'd like. Finding things to be thankful for in the periods of life that are a  bit rocky can be pretty difficult. I have been writing in a journal things that I am thankful for. Some of my thankfuls are a cup of hot coffee in the morning, a sunrise to wake up to, clean water to drink, a house to live in. When I stop and think of how I can be thankful, I find that any negative attitude starts to dissolve and joy refills me. I can't be angry and thankful at the same time. I can find gratitude in doing laundry because it means I have clothes to wear. I can find gratitude in cleaning up after supper because it means my family and I won't go to bed hungry. When I get thinking this way, I am reminded of how blessed I am. I have a full fridge and pantry, a home to protect me from the outside, a family who loves me, friends who care deeply and so much more. 

Although it is Thanksgiving weekend, I want to remember to be thankful every single day. God is so good to me and I am blessed beyond words.

My Church Journey

I have attended church for as long as I can remember. In fact, my earliest memory is where I was very young (2 or 3 years) and watching my parents walk away to the service. I sat on a bench near the door in tears. Something about that memory has made me very insistent that my kids always knew that I would come get them if they needed... but that isn't what this post is about.

Not only have I attended church for over 37 years, I have been part of the same church for just as long. Doug and I were baptized in it, had our wedding there, all four kids were dedicated in the same sanctuary and we'd attended the funeral of loved ones, including my mom. Church was a habit and it was what we did on Sunday mornings. After a while we went for the kids to ensure they grew up in a church family and had a similar upbringing to Doug and mine.

Quite a few years ago, I began seriously thinking of why I was going. The short answer was because I felt like my parents wanted me to. Not that it would have mattered to my mom but I was attending because I wanted them to be proud of me - I'm a people pleaser. So, we continued through the motions. Then Sarah was born and some of her issues came to light. I wasn't comfortable with her in a classroom with kids physically bigger and developmentally typical so I kept her with me. I often felt the disapproving looks of people around me as she sat by my feet so I would head out and spend the morning in the foyer. After doing this for a while, Doug and I asked each other, why do this if I could stay home and watch Sarah in the comfort of our house. So we took some Sunday's off (for the first time ever!) and stayed home.

In the summer of 2013, Andrea was a music leader for the kids' VBS program at a smaller country church which is a secondary site to the main campus we had been at. To support her, we decided to spend VBS Sunday at the smaller church. She had previously told me it was small but I really had no idea until I stepped into the building - what a difference from the very large congregation I had been used to. Because it wasn't a normal Sunday service (the pastor was dressed up in a crown and robes), we decided to try again the following week - when we were back in the van, I told Doug that we had very likely found our new church home.

What made me fall in love with it?

The incredible sense of community that we found was a feeling that I didn't even really know existed. I didn't realize what I was missing until it was filled by a church family that was so welcoming to us. I have developed deeper relationships with ladies over the past two years than I expected and their friendships are such a welcome blessing to me. In addition to these friendships, my relationship with Jesus has blossomed in ways that I never imagined. Through prayer sessions with a special friend, she showed me how real He is.

I have learned to be honest with these people. In a small church family, it's hard to hide and they genuinely want to know how I am doing. Being open with others was a big learning curve and the desire to truly know how others are doing is now engrained in me. I have stepped out of my comfort zone and spoken in front of the congregation as well as taken the leap of faith in leading a Bible study with some ladies.

Obviously not everything is smooth sailing in a church (we are after all, imperfect people) but through the tough times, I'm learning to lean on Jesus' strength. My walk with Him has hit some lows as well but I know He is faithful - He waits patiently with His arms open for me when I come back to Him.

The initial transition was tough on the teens since they pretty much made up the youth ages. It wasn't long though before Andrea was first asked to be on a worship team and eventually the opportunity to lead her own team came up. I didn't feel uncomfortable keeping Sarah with me and it was quickly accepted as the norm. Joshua soon loved the smaller church as well - like me, he doesn't love large crowds and so he too preferred the feeling of a quieter setting. The kids have always been welcome and felt like they belonged.

I firmly believe that God wants us at this little country church. We have a purpose and a reason to be there. I am thankful for the body of Christ that my family is part of.

Microcephaly Awareness

Microcephaly awareness day is September 30. Although we will never know the actual cause of Sarah's delays, her pediatrician suspects that at some point early in my pregnancy, her brain suffered from a lack of oxygen.

When she was born, she was tiny. Barely six pounds and 17 inches tall. I had never held a baby so tiny.

We had never heard the term "Microcephaly" until we began seeing our current pediatrician around Sarah's third birthday. The Mayo Clinic defines microcephaly as:

"a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth." (Mayo Clinic)

I believe that microcephaly is the greater diagnosis rather than the cerebral palsy. I have no medical reasoning other than doing my own research and seeing the effects of it. Sarah's head circumference is 46.6 centimeters which is average for a 20 month old. 

The consequences of microcephaly are:

"...depending on the cause and severity of the microcephaly, complications may include: 

• Developmental delays, such as in speech and movement
• Difficulties with coordination and balance
• Dwarfism or short stature
• Facial distortions
• Hyperactivity
• Mental retardation
• Seizures"

(Mayo Clinic)

With Sarah, the most obvious effects of microcephaly are her developmental delays and her coordination and balance difficulties. 

She loves life. Other than a few things that will make her unhappy, she is an absolute ray of sunshine in our lives. Her family is her world and many times during the day she will check in with me as to everyone's whereabouts. Sometimes she will just say "mom" to make sure I'm still around. She is so easy to please with a walk, visit to a park or a quick trip out for some fries. Having a child with a "special needs" label was not something I ever thought I'd have but Sarah has enriched my life in ways that I cannot explain. I am blessed.

"Mom, I'm doing homeschool!"

We bought her a mini doll from the American Girl store.

She was thrilled!

Pediatrician Appointment {09.15.15}

The six month appointment time has rolled around once more. Although when I mentioned to Sarah that she was going to the doctor, she was a little stressed, by the time we arrived, she had relaxed and did wonderfully well. I was so proud of her!

Today's stats are:

• weighs 40 pounds (4th percentile)
• is 3 feet, 9 inches inches tall (7th percentile) 
• head circumference is 46.6 centimetres (-3.5 standard deviation) 

The pediatrician did a few little baseline tests on her so we could get a bit of an idea where she's at developmentally. 

Her fine motor skills are about 25% of her age, so 2.5 years, her gross motor skills around 50%, about 3.5 years old and her verbal skills closer to 60% which is around 4 years old. Cognitively, he thought she was around 4 years old as well. He did say that her social skills were at a perfect 100% and he's very pleased with her progress. She even gave him a big hug on her own accord before we left and I think he was quite delighted by that. 

So, based on this information, I will hopefully be able to find some time in the next little while creating a personalized curriculum for Sarah where she will learn about the things that matter the most to her. We will work on relationship and problem solving skills that are pertinent to her. 

"Best Day Ever"

The three words Sarah speaks most often in a day are "best day ever." Last week I wrote a more serious post about what was on my heart at the time. If you missed, click HERE and you can read it.

So what constitutes a best day ever for Sarah?

• simply waking up and seeing me first thing in the morning
• letting her know minutes before we arrive that we are going to someone's house (L & K are her favorites)
• taking her out to get fries or a slurpee
• allowing her to watch another episode of Little House on the Prairie
• going to a friend's house and having the horses come and love her
• giving her the last few mouthfuls of my morning coffee
• taking her for a walk in her stroller
• licking the icing off the beaters
• meeting friends at a park to play or just taking her to a park
• having a morning bath
• eating chocolate chip cookies

And the list could go on. My point is that something so little can make her day the best one ever and it usually takes a very small amount of effort on my part. She lives in the moment and every day brings her joy which in turn brings joy to mine. I am so thankful for this small person who can make even the greyest of days into a happy and sunny one.

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!