Microcephaly Day | September 30

Microcephaly awareness day is tomorrow, 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 so tiny despite being almost 1.5 weeks overdue. 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. His diagnosis was almost instant as soon as he saw her. 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 47.6 centimeters which is average for a 20-22 month old. In comparison, a nine year old should have a head size of about 52 centimetres.

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 severe developmental delays. She doesn't act, behave, speak or learn like a typical 9 year old. Instead it's as though we have a 3-4 year old all the time. We have seen that over time, her coordination and balance have improved quite a bit. She struggles to walk long distances so the stroller is still a useful tool in our lives. 

She loves life. Other than a few things that 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 or a donut. She loves to play with Duplo, wooden trains, and stuffed animals. 

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 and can't imagine life any other way.

Eight Years Old!

Sarah turned EIGHT last month! Oh how the years have flown by and I can't believe how far she's come. I decided to do a bit of a review on her stages and development, if not for my reader's sake, then for my own.

June 22, 2008: Sarah Anne was born. Nine days after my due date she finally made her appearance coming in at 6 pounds, 1 ounce and 17 inches tall. When I first held her, I recall thinking that I had never seen or held a baby so tiny. Doug had to go out and buy a preemie sleeper for her to come home in. One of the things I clearly remember about driving home from the hospital was that she cried the whole way. To this day, she still doesn't like being in her carseat and often pushes or pumps her legs while driving.

August 27, 2008: Sarah had gained her first pound by two months old. Yes, it was at this point that we took her to a specialist regarding her extremely slow weight gain after my midwife suggest we get Sarah checked out.

September 5, 2008: Sarah had a cardiologist appointment this afternoon and were told that she would be given an EKG (electrocardiogram) and an echocardiogram (ultrasound of the heart). Since the patient has to be relatively still for these tests, Sarah was restrained by Doug, myself and one nurse. Yes, it took three adults to keep a spirited 2.5 month old still. We were told that if she didn't settle for the echo, she would have to be sedated and my aching mother's prayer was answered and she took her soother and relaxed for most of it. 

October 10, 2008: (Taken from a previous blog post) Doug and I have just arrived home after Sarah's appointment at the pediatrician (Dr. Lee). It was not a positive event for us. First the stats: Sarah gained 3 oz and 1/2" in height over the last 10 days. Unfortunately her head circumference stayed the same.

We are thankful for the weight gain, but it is still less than half of what it should be. The height increase is good, and put her back on the right track there - but the lack of gain on hat size indicates 

stagnant brain growth. 

We are needing to do more blood work for genetic testing as well as get an appointment for an MRI to determine that her brain and skull are growing as they should. (the MRI will require general anesthetic for Sarah) 

In light of the growth that has been seen, the pediatrician did not think it necessary to admit Sarah to hospital at this point, though that is a very real possibility if these trends don't change. Our next 

appointment with Dr. Lee is on October 22nd and we were given the impression that we should come prepared to hear that Sarah will be put into the first available bed. This is obviously NOT the route we want to travel!

October 22, 2008: (Another blog post) Good evening. Well it was another eventful day at the U of A hospital for us. Certainly a more positive outcome than the last time. 

So, first the stats: Sarah gained 13 ounces bringing her to 8 pounds, 4.2 ounces and yes, I'll count in the .2! She also put on an additional 1/4 inch in length. Her head circumference went up 1/2 cm which is ok but not great yet. She's still falling away from the curve on that end. That being said, we don't need to see the doctor for another 6 weeks!!

Her weight gain is certainly an answer to prayer and we are thankful for every one of them. As for her head... her pediatrician has requested an MRI just to make sure her brain is developing normally even though it is small. This is procedure is probably the most stressful for me now. All I know is that she will need to be sedated and I won't be able to feed her up to four hours before. Then there is all the pre-op work to do as far as getting the IV started and such. The MRI itself is about 30 minutes and then there will be her wake up time before I will be able to see and feed her.

The MRI at this time showed nothing significant.

December 2008: At six months, Sarah was 11 pounds, 3 ounces

May 2009: When she was 11 months old, she began to crawl

June 22, 2009:  At one year old she was 13 pounds and 11 ounces.

December 2009: When eighteen months rolled around she was 16 pounds and started to walk on her own.

** When I think back to this moment, I wonder why I never saw any red flags. All my other kids walked at a normal time and so this was so late. Sarah was also SO very small. I'm sure she was still wearing 9-12 month clothes at her 2nd birthday.**

December 22, 2010: I remember writing in a previous blog post that she wouldn't go to kindergarten in diapers. It makes me smile to look back and think I had no idea what the next few years were going to hold for us. She was 22.5 pounds.

April 2011: Doug and I were beginning to wonder about Sarah's speech and after having it tested, found out that there was a lot more that we would be dealing with.

May 16, 2011: Oh the plethora of information that we received this morning.  There are quite a few issues where Sarah's development is concerned.  In most areas, she is at the age of a 24-25 month old.  In one area (visual recognition) she's at the level of an 18 month old and only in her social skills is she at the correct age.  So in all areas of development, she is significantly delayed.  

July 18, 2011: We had our first appointment with a new pediatrician who deals mainly with special needs kids. This is when our journey into an unknown future began...

September 27, 2011: The doctor's very first diagnosis, without even doing any testing was that Sarah has developmental delays and Microcephaly. Microcephaly means a smaller than average head due to a lack of brain growth. The doctor suspects that early on in my pregnancy, her brain was deprived of the necessary amount of oxygen and she suffered brain damage.  As a result, she will always need special education. She has documented delays in speech, fine and gross motor skill and visual memory. Her condition is chronic and organic. She will not get worse but there will probably come a point when she no longer developed cognitively - she'll most likely need someone to care for her for the rest of her life.

November 24, 2011: We were given the results of the MRI.  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 as I understand, is 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.  

The next few years were a blur of tests, assessments, doctor appointments tears and prayers. I look back and am so thankful I had the clarity of mind to actually write about it. In fact, I wrote so much, that I can't even really write about it in this blog as it would take too long. 

Our latest very exciting development for Sarah is that she is diaper free. I had started to see signs of her being ready and her "carrot" was a camping trip that we take with our church each year. I told her she couldn't go camping in diapers and within a few days, she was completely done. There were times when I was sure I would be doing diapers forever. 

I am excited to see what will happen in the coming year for Sarah. I look forward to writing all about her wonderful-ness very soon! 

Newborn

EIGHT!

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!

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.

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!

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.

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!

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.

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"

Third Anniversary

May 16th marked the third anniversary of the day that "normal" was redefined for us. I blogged about that day HERE. Now I'm not totally sure why I didn't write this post on Friday, I think I got my dates mixed up.

I can still see so clearly in my mind about how that very first home visit, which consisted of a DISC (Diagnostic Inventory for Screening Children) assessment had gone. I had no idea what to expect of this visit and when I saw how low Sarah scored on the tests, I was devastated. We were told that she was anywhere from 8-18 months behind kids who were her age. It was quite the blow to hear from someone that our daughter wasn't developing typically.

The months and years that followed consisted of biweekly home visits from our Early Intervention Coordinator which were times full of play ideas, tips and encouragement. I think initially I was resistant to Wendy, possibly because I wanted to deny that anything was different with Sarah. As time went on, I found her to be someone who was an encourager, supporter and cheerleader for me. I was learning to be strong for Sarah and to fight for her. I am so thankful for the times Wendy, Sarah and I had together and I believe she was a vital part of our lives for that time. It was sad to say good bye to her when Sarah turned five.

This day marked the beginning of a whole new chapter of life for us. We would quickly learn words like cerebral palsy, severe microcephaly, severe global developmental delays, intervention, special needs and more. Although these words do not define who Sarah is and they are a part of of our lives, she didn't change that day, simply because a label was given.

Sarah continues to be a blessing to Doug, myself, our family and to just about anyone who meets and knows her. Our life took a detour that day. We are on a different journey than we may have thought we would have been and although it hasn't all been easy, we have conquered many mountains and milestones. We celebrate each victory with enthusiasm, no matter how small. The other day, Sarah picked me a dandelion bouquet for the first time and it was such a precious gift to me.

Today, I don't know where she is as far as her developmental stages are. She certainly acts and speaks considerably younger than she is but I have no tools to base that on. If I had to guess, I'd place her around 3.5-4 years old, depending on the skill. And today, that's okay. She is perfect in God's eyes and she is exactly how he wants her to be.

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Parent Appointment (12.10.13)

Yesterday afternoon, I had the opportunity to meet with Sarah's pediatrician. By myself. Without my sweet (screaming) daughter. It was probably the best appointment I've had with him. The clinic was closed except for the doctor, myself and a few nurses.

When I sat down in his office, Sarah's chart was set out and open already, which was kind of nice because I felt he was prepared. For a while now, Sarah has been displaying some really odd symptoms and I needed to voice my thoughts and see what Dr. M's ideas were on it. Some of these things are:

• flaps her arms
• spins (and doesn't appear to be dizzy)
• she doesn't make good eye contact
• no understanding of fear and danger
• laughs inappropriately
• insensitive or oversensitive to pain

He showed me Sarah's head circumference chart which indicates her head size to be markedly lower than the average five and a half year old. He said that out of 100 kids, 96 of them would have an average sized head, two would be above average and two would be below. Sarah would be one of those two and she's an extreme case. Now, because her head is so much smaller than average, the result is severe delays in all areas of development. These include fine and gross motor skills, social interaction, auditory memory (remembering what she hears), visual memory (remembering what she sees), self help, expressive language (what she can speak) and receptive language (what she understands).

So, in a nutshell: all of Sarah's delays are due to the extreme Microcephaly: (Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. Microcephaly can be present at birth or it may develop in the first few years of life). 

Depending on the severity of the accompanying syndrome, children with microcephaly may have:

•  or learning disability
• delayed motor function and speech
• facial distortions,
• dwarfism or short stature,
• hyperactivity,
• seizures,
• difficulties with coordination and balance, and
• other brain or neurological abnormalities.

Some children with microcephaly will have normal intelligence and a head that will grow bigger, but they will track below the normal growth curves for head circumference.

Previous notes taken from HERE

Due to her immaturity (Dr. M placed her at about age 2), she might display autistic-looking "symptoms" only because of the delays that are reflective of the Microcephaly

He told me that she will always be fairly behind kids her age and the gap will continue to grow as she gets older and that's because she's developing at a much slower rate than others. She also very likely will be dependent into her adulthood. Maybe not, but he said to be prepared for a lifetime of supporting her.

Sarah is still really small for her age and is severely disproportionate which is why she looks like a little adult. If you don't know what I mean, the next time you see her, you'll that she doesn't have the large "bobble" head that other kids have.  So, when all is said and done, I am really thankful I had to opportunity to talk to Dr. M without a (loud) distraction. He is blunt, honest, very good at what he does and has a true love for kids, including Sarah. I also know that nothing has changed and that Sarah is still Sarah. Homeschooling her is and for now, always will be the best thing for her because I can follow her lead and teach her what I think is relevant to her. I am blessed to have friends who are supportive and encouraging, including someone who texted with me until 10:30 last night offering me some hopeful and reassuring insight to what I learned today. She's very appreciated and I am very thankful for her and the time she gives me!  This is what recovery from a Dr. appointment looks like! So how are we doing? Doug and I are now processing the idea that Sarah may possibly be dependent on us (or someone else) for a very long time, possibly forever. I think both of us lost some sleep last night as those were the thoughts that consumed us. Sometimes it feels like I take two steps forward and then one step back as far as my faith walk goes.  The verse that keeps coming to mind is found in Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. This is the foundation of what keeps me going on the rough days when I feel like the weight of the world is on my shoulders.  The song The River by Brian Doerksen is one of my favourites and seems to be ringing true for me today. If you have the chance to listen to it on You Tube, you should. Here's the lyrics: 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