A Daddy's Thoughts {Full Version}

I have chosen to put all three parts of Doug's post into one so that it is easier for me to link up with other special needs bloggers. 

A guest post?  By me??

I’ve thought about starting a blog of my own, but haven’t ever taken the first step. (Maybe I’ve been a bit intimidated by the well composed thoughts that Stephanie has published) Now as I write this post as a “guest” of my wife perhaps that seed will take root!

Stephanie has asked me to provide some of my perspective on our youngest daughter (Sarah) and to tell some of our story through a Dad’s viewpoint.  It’s something that I think of often, but I’m not sure as to how to put it into written form.

Let’s start with a description of Sarah herself.  She is in many ways the most demonstratively loving person that I know.  Somehow she has an intuitive sense when someone is feeling down, and she responds immediately with hugs, “cunggles” (cuddles), and kisses.  Perhaps the most striking examples of this side of Sarah were evident at the funeral of my Grandma Wunsch last summer.

If you read this blog, then you are well aware that we (okay, mostly Stephanie) homeschool our children. We view living and sharing life together as the best means by which to prepare our kids for their adult lives.  That means allowing them to walk with us through some of the tough parts of life to see how we handle it... and helping them to break down the parts that went well and the parts that we should have dealt with differently.  That’s how we all learn to move forward in life.

When Grandma passed away, it was an opportunity for all four kids to learn that:

1. Death is indeed a part of life, and 
2. There are various ways and reasons that people grieve, and 
3. There are various ways that people gain comfort and give it to others

With these things in mind, they all came with Stephanie and I to the funeral. All four of them handled themselves well, but for the sake of this post I will focus on Sarah.

Stepping into the foyer of the funeral home, the first thing that she saw was the people that she loves... Grandparents, Uncle Mike, Great Aunts and Uncles, Cousins and Second Cousins, family friends, and people that she loves but hasn’t met yet.  After saying hi to some people very quickly, she zeroed in on Mrs. Bannister.

“Grandma Bannister” as we call her, is the mother-in-law to my Mom’s brother. She has been coming to Wunsch Bunch gatherings for many years, and she is a hugger.  Grandma Bannister is a sweetheart of a lady, and naturally was saddened to have lost the one person in the family who understood what it is to be a widowed family matriarch.  Sarah bee-lined for Grandma Bannister, and immediately asked for a “hug-uppie”; her way of asking to sit on your lap for a hug and cuddle.

With some effort, Grandma Bannister lifted our little peep to her lap, and was rewarded with a big hug and a kiss on the cheek for her efforts.  A smile came to Grandma Bannister’s face, and her body language relaxed in the way that is visible when one knows that they are genuinely and unconditionally loved.

A few moments later, Sarah met my cousin for the first time.  Aleta had driven from the interior of British Columbia to be at the funeral, and (like all of us who were present) was having an emotional moment as we gathered in the family room to prepare to enter the funeral chapel.  I can’t even begin to guess why, but rather than reach up for a hug, Sarah chose to kneel down and place a big kiss on Aleta’s foot. Maybe she couldn’t see how to give a hug to someone who was sitting with a kleenex to keep makeup intact, but she knew that some form of comfort was called for!

After the service (which Sarah behaved very well for), it was time for the internment.  Walking to the graveside was a sombre affair on the sunny afternoon.  Little was being said as people made their way across the manicured lawn and through the rows of headstones... until Sarah’s voice rang out.

“F’owers!!  Look Mom, f’owers!!!”

It made me look up.  Sarah was entirely right. The grass was green, the skies were blue, and many (if not most) of the graves had colorful bouquets on them.  It was a well kept place to remember loved ones, and for the first time I focused more on the flowers than the markers that gave small insights to the lives of the deceased.  

Even a graveyard can be a place of beauty and wonder if you use the right lens to look through.  On that day, it was the lens that Sarah provided which opened my eyes to see.

That is one day in the life of Sarah that provides a lot of insight to her personality.

Now, let me go further back and further forward in the story...

When you have three children, with both male and female, born in the spring and in the fall, it feels as though the birth of a fourth child should be almost routine.  You know the drill of labour and delivery, the basic care and feeding of an infant is a familiar road, and you have an image in your mind as to what the addition of the sixth member of your household will be like.

Then you realize that you were both presumptuous and wrong.

Sarah’s entrance to the world was about the easiest of the four children.  No medical concerns, no issues with labour and delivery, and other than being a couple days later than we had planned on, everything went smoothly.

She was healthy by all accounts, but seemed somehow a bit more delicate than her sisters had been.  

We knew that Sarah was not a big infant, but neither Stephanie nor I fit in the description of ‘giant’, either... so we didn’t worry about it.

Then almost two months on, the midwife (Yes, midwife, not OB. The midwife was also an MD, but that’s an entirely different post) told us that she was concerned about Sarah’s lack of growth and that she was now described as having “failure to thrive”. This was noticed because Sarah had only gain ONE pound in that time.

I could think of several grown adults that I knew who weren’t exactly thriving in life, but had absolutely no idea what that meant for my little girl.  It turns out that it’s a generic medical term which loosely means, “Something ain’t right here, but we have no idea what it might be or what it might mean, so we’re going to run a whole slew of tests that your baby will hate and which will likely shorten the parent’s lifespan by 6-8 months due to the stress induced by uncertainty and concern for their child.”

This is where we returned to the Stollery Children’s Hospital in Edmonton.  Now, I am very thankful that we live so close to such a fine institution, as we have benefitted from their asthma clinic with Joshua and Andrea and it is really a world-class hospital... but I don’t like being in the position to need their help!

I can’t recall exactly what tests were done, but I do remember an early morning for an MRI that required Sarah to be under general anesthetic.  I also remember being present what Sarah had a test done by a cardiologist, and holding this tiny body still while they connected wires and she screamed her little lungs out. (Turns out that a really small heart has really tight turns in the arteries that makes a murmur for MD’s to be unnecessarily concerned over).  There were several more as well, but time has fogged my memory at this point.

A couple of years passed. We were blessed with assistance from the Early Childhood Intervention branch of Alberta Health.  (Wendy is a person who truly cares about her patients, and both Stephanie and Sarah have benefitted greatly from her involvement)

Eventually the road led us to one of the top pediatricians in Alberta, if not all of Canada.  He is extremely busy, but thanks to the persistence of our family doctor and the opportunity for our sister-in-law to speak with him during a shift one night, he agreed to an appointment to consider taking Sarah onto his caseload.  

Another set of doors was nudged open, and we moved into more advanced testing.  More blood work was ordered, another MRI, an appointment with a geneticist, examinations by physical therapists and many other “-ists” whose specialities escape my memory.  

We watched Sarah fall further behind her peers in almost every way. As a Dad, I wanted (and if I’m honest, still want) to “fix it”.  To fight something and make it better.  To find the specialist or treatment that would enable my youngest and smallest daughter to gain weight, learn to speak, to improve her balance and coordination, to learn her colors and so many other things.  So I did what I could, which was work to put food on the table, support Stephanie as best I knew how, and pray.

Then came “The Day”.

I won’t get into the whole story now, but I will never forget the day that we received the first diagnosis that rocked our world.  The pediatrician has poor tact by his own admission, and when we went into his office to receive the results of the MRI he lived up  (down?) to his tendencies.  He explained that the test had made it obvious that she had CP, due to the thinning of the corpus callosum. “She will always be behind her peers, and we’re not sure how far she will progress to, but she will continue to prog...”

And I stopped him there as I watched Stephanie go into overload and felt the blood pounding in my own ears.

“Hang on a second... what is CP, and what corporate thing are you talking about??”

Thankfully he looked up and saw that both Stephanie and I had been hit by the proverbial truck.  He then explained things more slowly.  The thinning of the corpus callosum (which is the dividing tissue between the two halves of our brain) means that there is less material to carry electrical signals back and forth.  It is a classic sign of Cerebral Palsy.  Sarah’s case is very mild, but it is somewhat complicated by the second diagnosis of microcephaly.

Cerebral Palsy is what causes Sarah to continue to stumble when she walks and to have poor balance.  Microcephaly means small-head, which not only means that she will have a small hat size when she grows up, but that there is also a smaller sized brain inside.

The third diagnosis was “Global Developmental Delay” which is a term that even the medical community doesn’t widely understand.  In short, Sarah is behind her peers in every way that you can measure it - physically, mentally, and emotively.  (As I wrote before, she exceeds them in loving others)

This rocked our world as we struggled to figure out what all of this meant.  As the provider for the household, I was wondering if I needed to start saving now to provide life-long care for Sarah so that she would be okay as an adult.  We had already figured out that as homeschoolers we don’t fit into the mold of the institutionalized healthcare system and that each step would be us fighting for our daughter. (evidently only a small proportion of parents want to learn how to help their children themselves, while most want to send the child off for someone else to ‘fix’ them)  There were WAY more questions than answers and even the answers didn’t totally make sense.

After many months of processing, here is what we have come to understand:

• Sarah’s Cerebral Palsy is minor, but it will not get any worse with time
• We need to keep an eye on her because in addition to having very little risk aversion, the CP means that her physical coordination and balance are both very poor.
• No one can tell us how far she will progress in her learning, or what final level of self-sufficiency she will achieve... but she will keep progressing
• The progress she makes will be slower than her peers, so over time we will watch her get further and further behind “normal” kids... but she will keep progressing at her own pace

I have chosen to focus on the fact that she will grow and develop in her own time.  This stems partially from my own dealing with depression and the need and tremendous benefit for me to view things from a position of hope. (Stephanie has written a couple of posts on our journey together to date through my depression, and we will likely write more about that in future)  Every time I see a forward step in Sarah I choose to be thankful... even if it is opening door knobs to make a mess as she explores part of the world that she didn’t have access to previously!

We now have a beautiful little girl who will turn 5 in June.  Functionally, we have a three year old with more reach and greater strength than the typical toddler.  Mix it with the intense curiosity of someone trying to catch up to her older siblings, and we have to be constantly on the look out for knives and scissors that could modify her surroundings, for opportunities to climb to heights where Sarah’s balance may fail her, and for open doors and gates that Sarah may take off through to follow something she sees through the portal to the great unknown.

Sarah has forced Stephanie and I to re-examine what it means for us to parent our children.  How do we care for her without neglecting Joshua, Andrea, and Arianna?  How do we make sure the older children have the experience of things that challenge and engage them while we move at the pace of the person with the shortest legs?  At what point are we asking too much of the older kids when we ask them to include Sarah in their activities, or to keep an eye out for her while we attend to other things that keep our household running?

Sarah has brought a dynamic to our family that we couldn’t have found without her.  She is loved by everyone she encounters, and I don’t know yet of an exception (there has to be someone, somewhere, but I don’t know of anyone).  I’ve learned how to find beauty in grief, to find hope in trial, and what unconditional love looks like when it comes from tiny arms time after time... 

You might say that I’ve learned a lot about what God is like thanks to Sarah and thanks to the challenges that we have walked through to this point together.  

I couldn’t ask for more from any of my children!

A Daddy's Thoughts {Guest Post} Part 3

This is the last portion of Doug's contribution to my blog this weekend. I enjoyed reading about how he's seen the past few years through writing. Thanks Babe!

You can read part 1 here: PART 1
You can read part 2 here: PART 2

After many months of processing, here is what we have come to understand:

• Sarah’s Cerebral Palsy is minor, but it will not get any worse with time
• We need to keep an eye on her because in addition to having very little risk aversion, the CP means that her physical coordination and balance are both very poor.
• No one can tell us how far she will progress in her learning, or what final level of self-sufficiency she will achieve... but she will keep progressing
• The progress she makes will be slower than her peers, so over time we will watch her get further and further behind “normal” kids... but she will keep progressing at her own pace

I have chosen to focus on the fact that she will grow and develop in her own time.  This stems partially from my own dealing with depression and the need and tremendous benefit for me to view things from a position of hope. (Stephanie has written a couple of posts on our journey together to date through my depression, and we will likely write more about that in future)  Every time I see a forward step in Sarah I choose to be thankful... even if it is opening door knobs to make a mess as she explores part of the world that she didn’t have access to previously!

We now have a beautiful little girl who will turn 5 in June.  Functionally, we have a 2½ - 3 year old with more reach and greater strength than the typical toddler.  Mix it with the intense curiosity of someone trying to catch up to her older siblings, and we have to be constantly on the look out for knives and scissors that could modify her surroundings, for opportunities to climb to heights where Sarah’s balance may fail her, and for open doors and gates that Sarah may take off through to follow something she sees through the portal to the great unknown.

Sarah has forced Stephanie and I to re-examine what it means for us to parent our children.  How do we care for her without neglecting Joshua, Andrea, and Arianna?  How do we make sure the older children have the experience of things that challenge and engage them while we move at the pace of the person with the shortest legs?  At what point are we asking too much of the older kids when we ask them to include Sarah in their activities, or to keep an eye out for her while we attend to other things that keep our household running?

Sarah has brought a dynamic to our family that we couldn’t have found without her.  She is loved by everyone she encounters, and I don’t know yet of an exception (there has to be someone, somewhere, but I don’t know of anyone).  I’ve learned how to find beauty in grief, to find hope in trial, and what unconditional love looks like when it comes from tiny arms time after time... 

You might say that I’ve learned a lot about what God is like thanks to Sarah and thanks to the challenges that we have walked through to this point together.  

I couldn’t ask for more from any of my children!

A Daddy's Thoughts {Guest Post} Part 2

Now, let me go further back and further forward in the story...

When you have three children, with both male and female, born in the spring and in the fall, it feels as though the birth of a fourth child should be almost routine.  You know the drill of labour and delivery, the basic care and feeding of an infant is a familiar road, and you have an image in your mind as to what the addition of the sixth member of your household will be like.

Then you realize that you were both presumptuous and wrong.

Sarah’s entrance to the world was about the easiest of the four children.  No medical concerns, no issues with labour and delivery, and other than being a couple days later than we had planned on, everything went smoothly.

She was healthy by all accounts, but seemed somehow a bit more delicate than her sisters had been.  

We knew that Sarah was not a big infant, but neither Stephanie nor I fit in the description of ‘giant’, either... so we didn’t worry about it.

Then almost two months on, the midwife (Yes, midwife, not OB. The midwife was also an MD, but that’s an entirely different post) told us that she was concerned about Sarah’s lack of growth and that she was now described as having “failure to thrive”. This was noticed because Sarah had only gain ONE pound in that time.

I could think of several grown adults that I knew who weren’t exactly thriving in life, but had absolutely no idea what that meant for my little girl.  It turns out that it’s a generic medical term which loosely means, “Something ain’t right here, but we have no idea what it might be or what it might mean, so we’re going to run a whole slew of tests that your baby will hate and which will likely shorten the parent’s lifespan by 6-8 months due to the stress induced by uncertainty and concern for their child.”

This is where we returned to the Stollery Children’s Hospital in Edmonton.  Now, I am very thankful that we live so close to such a fine institution, as we have benefitted from their asthma clinic with Joshua and Andrea and it is really a world-class hospital... but I don’t like being in the position to need their help!

I can’t recall exactly what tests were done, but I do remember an early morning for an MRI that required Sarah to be under general anesthetic.  I also remember being present what Sarah had a test done by a cardiologist, and holding this tiny body still while they connected wires and she screamed her little lungs out. (Turns out that a really small heart has really tight turns in the arteries that makes a murmur for MD’s to be unnecessarily concerned over).  There were several more as well, but time has fogged my memory at this point.

A couple of years passed. We were blessed with assistance from the Early Childhood Intervention branch of Alberta Health.  (Wendy is a person who truly cares about her patients, and both Stephanie and Sarah have benefitted greatly from her involvement)

Eventually the road led us to one of the top pediatricians in Alberta, if not all of Canada.  He is extremely busy, but thanks to the persistence of our family doctor and the opportunity for our sister-in-law to speak with him during a shift one night, he agreed to an appointment to consider taking Sarah onto his caseload.  

Another set of doors was nudged open, and we moved into more advanced testing.  More blood work was ordered, another MRI, an appointment with a geneticist, examinations by physical therapists and many other “-ists” whose specialities escape my memory.  

We watched Sarah fall further behind her peers in almost every way. As a Dad, I wanted (and if I’m honest, still want) to “fix it”.  To fight something and make it better.  To find the specialist or treatment that would enable my youngest and smallest daughter to gain weight, learn to speak, to improve her balance and coordination, to learn her colors and so many other things.  So I did what I could, which was work to put food on the table, support Stephanie as best I knew how, and pray.

Then came “The Day”.

I won’t get into the whole story now, but I will never forget the day that we received the first diagnosis that rocked our world.  The pediatrician has poor tact by his own admission, and when we went into his office to receive the results of the MRI he lived up  (down?) to his tendencies.  He explained that the test had made it obvious that she had CP, due to the thinning of the corpus callosum. “She will always be behind her peers, and we’re not sure how far she will progress to, but she will continue to prog...”

And I stopped him there as I watched Stephanie go into overload and felt the blood pounding in my own ears.

“Hang on a second... what is CP, and what corporate thing are you talking about??”

Thankfully he looked up and saw that both Stephanie and I had been hit by the proverbial truck.  He then explained things more slowly.  The thinning of the corpus callosum (which is the dividing tissue between the two halves of our brain) means that there is less material to carry electrical signals back and forth.  It is a classic sign of Cerebral Palsy.  Sarah’s case is very mild, but it is somewhat complicated by the second diagnosis of microcephaly.

Cerebral Palsy is what causes Sarah to continue to stumble when she walks and to have poor balance.  Microcephaly means small-head, which not only means that she will have a small hat size when she grows up, but that there is also a smaller sized brain inside.

The third diagnosis was “Global Developmental Delay” which is a term that even the medical community doesn’t widely understand.  In short, Sarah is behind her peers in every way that you can measure it - physically, mentally, and emotively.  (As I wrote before, she exceeds them in loving others)

This rocked our world as we struggled to figure out what all of this meant.  As the provider for the household, I was wondering if I needed to start saving now to provide life-long care for Sarah so that she would be okay as an adult.  We had already figured out that as homeschoolers we don’t fit into the mold of the institutionalized healthcare system and that each step would be us fighting for our daughter. (evidently only a small proportion of parents want to learn how to help their children themselves, while most want to send the child off for someone else to ‘fix’ them)  There were WAY more questions than answers and even the answers didn’t totally make sense.

 ... Part 3 to follow soon....

A Daddy's Thoughts {Guest Post} Part 1

Today's blog posts (one long one split up) are brought to you by my wonderful husband. 

"A guest post?  By me??

I’ve thought about starting a blog of my own, but haven’t ever taken the first step. (Maybe I’ve been a bit intimidated by the well composed thoughts that Stephanie has published) Now as I write this post as a “guest” of my wife perhaps that seed will take root!

Stephanie has asked me to provide some of my perspective on our youngest daughter (Sarah) and to tell some of our story through a Dad’s viewpoint.  It’s something that I think of often, but I’m not sure as to how to put it into written form.

Let’s start with a description of Sarah herself.  She is in many ways the most demonstratively loving person that I know.  Somehow she has an intuitive sense when someone is feeling down, and she responds immediately with hugs, “cunggles” (cuddles), and kisses.  Perhaps the most striking examples of this side of Sarah were evident at the funeral of my Grandma Wunsch last summer.

If you read this blog, then you are well aware that we (okay, mostly Stephanie) homeschool our children. We view living and sharing life together as the best means by which to prepare our kids for their adult lives.  That means allowing them to walk with us through some of the tough parts of life to see how we handle it... and helping them to break down the parts that went well and the parts that we should have dealt with differently.  That’s how we all learn to move forward in life.

When Grandma passed away, it was an opportunity for all four kids to learn that:

1. Death is indeed a part of life, and 
2. There are various ways and reasons that people grieve, and 
3. There are various ways that people gain comfort and give it to others

With these things in mind, they all came with Stephanie and I to the funeral. All four of them handled themselves well, but for the sake of this post I will focus on Sarah.

Stepping into the foyer of the funeral home, the first thing that she saw was the people that she loves... Grandparents, Uncle Mike, Great Aunts and Uncles, Cousins and Second Cousins, family friends, and people that she loves but hasn’t met yet.  After saying hi to some people very quickly, she zeroed in on Mrs. Bannister.

“Grandma Bannister” as we call her, is the mother-in-law to my Mom’s brother. She has been coming to Wunsch Bunch gatherings for many years, and she is a hugger.  Grandma Bannister is a sweetheart of a lady, and naturally was saddened to have lost the one person in the family who understood what it is to be a widowed family matriarch.  Sarah bee-lined for Grandma Bannister, and immediately asked for a “hug-uppie”; her way of asking to sit on your lap for a hug and cuddle.

With some effort, Grandma Bannister lifted our little peep to her lap, and was rewarded with a big hug and a kiss on the cheek for her efforts.  A smile came to Grandma Bannister’s face, and her body language relaxed in the way that is visible when one knows that they are genuinely and unconditionally loved.

A few moments later, Sarah met my cousin for the first time.  Aleta had driven from the interior of British Columbia to be at the funeral, and (like all of us who were present) was having an emotional moment as we gathered in the family room to prepare to enter the funeral chapel.  I can’t even begin to guess why, but rather than reach up for a hug, Sarah chose to kneel down and place a big kiss on Aleta’s foot. Maybe she couldn’t see how to give a hug to someone who was sitting with a kleenex to keep makeup intact, but she knew that some form of comfort was called for!

After the service (which Sarah behaved very well for), it was time for the internment.  Walking to the graveside was a sombre affair on the sunny afternoon.  Little was being said as people made their way across the manicured lawn and through the rows of headstones... until Sarah’s voice rang out.

“F’owers!!  Look Mom, f’owers!!!”

It made me look up.  Sarah was entirely right. The grass was green, the skies were blue, and many (if not most) of the graves had colorful bouquets on them.  It was a well kept place to remember loved ones, and for the first time I focused more on the flowers than the markers that gave small insights to the lives of the deceased.  

Even a graveyard can be a place of beauty and wonder if you use the right lens to look through.  On that day, it was the lens that Sarah provided which opened my eyes to see.

That is one day in the life of Sarah that provides a lot of insight to her personality."

First Time With A Band Aid

I know I posted this on Facebook but I wanted to write this for my own future reference as well as for my blogging friends.

This afternoon when I came home from a quick trip to the city, I found Andrea cuddling a very upset Sarah. We managed to locate the source of her crying... her tiny finger had gotten pinched in our closet door and was bleeding quite profusely. I knew that I needed to cover the little injury but I also knew that it was going to be tough since Sarah's sensory issues would come into play.

Sure enough, it took myself, Andrea and Arianna to hold her still enough to wrap a bandaid around her itty bitty finger. She does NOT like having something like that on her skin. When it was finally on, she continued to cry... for a good 30 minutes. She finally dozed off in my lap for a few minutes and when she woke up, she was in a slightly better frame of mind... enough to at least ask to watch Blue's Clues.

Although the rest of the day went smoothly, she still refuses to use her hand. She won't eat with it, hold a cup or even let me touch it. When I even mention that we can take it off, she flips out. Poor girl. I'm not entirely surprised by her reaction since she doesn't like her hair done, jewellery or anything else that's 'extra' and if an earring falls out it's quite a big deal to get it back in.

I know it's part of the SPD and so it's just something that we'll have to work on with her. And maybe just hope that she doesn't fall too much this summer!

This is how she's held her hand most of the day.

Pity Party

Do you ever have a day where you think everyone and everything is out to get you? Like the world has a personal 'thing' for you? Today was my day. It started out ok but by mid afternoon, it seemed like everything was just falling apart. I had waited almost a week for a dentist appointment for a tooth that had really been bothering me. I had figured it would be a simple cavity, simple filling and I'd go home. Nothing quite matches the deflated feeling I had when I was told that the root was infected and I'd need a course of antibiotics before a root canal to be preformed on Friday. I could just feel the energy being sucked out of me. *sigh* If you are one of those fortunate people who have never had any issues with your teeth, be thankful. Very thankful.

So I booked an appointment for Friday morning and headed to the pharmacy to get some painkillers and antibiotics. Again, something that should have been so simple took over an hour long. I wasn't enrolled as Doug's spouse in the insurance so I had to wait for that to get sorted out, the line ups were all 3-4 people deep and by this point, I was already in a 'mood'. I just wanted to go home. Curl up with my little ones and watch a movie. And eat food that's bad for me. Just because I feel sorry for myself.

Tomorrow is a new day and I'm sure once I have some antibiotics and Tylenol 3's in my system I'll feel better.

Six Quick Takes

1. If my sister recommends a book, chances are really high that I will go out and buy it. Just because she said so.

2. As much as my kids love sleepovers (here and elsewhere), spending the night away tends to put them in foul moods for the next day.

3. After a cold, snowy weekend, I'm sure looking forward to this week's weather warming up. I'm tired of winter and ready for some spring. Bring on the bikes, walks and playing outside!

4. I am watching a huge, fat rabbit nap in our yard this morning. There's very little white on him (or her) so that must mean something good. Right?

5. I've been up off and on since 5:30 when Sarah first declared she was hungry. I gave into her nudges at 6:45 and she's managed to finish off two bowls of Cheerios!

6. Today is our first day with respite care. I'm sure it will be good for us... just a change and I don't always like change. I'm working really hard at being open to it though.

Depression Part 2

On February 25, I opened the door to allow people to have a glimpse into our life as we deal with depression. If you'd like a refresher, you can CLICK HERE.

Of course with a Part 1, there should be a Part 2. So here I go.

I would have to say that over the last four months, I've noticed less extreme highs and lows than before. Sure Doug has his good days and his bad ones but they are fewer and far between that they were even six months ago. We also changed our diet. We eat way more chicken and fish, less red meat and almost no wheat and gluten. I serve lots of salads and oodles of veggies at every meal. I think the dietary switch has been a huge factor in his moods.

As his wife and life partner, I also ensure that we go out at least once a month. Just the two of us. We sit at our favorite place, Original Joe's and have a good ol' heart to heart. I am blessed that he is honest with me as well. He has always been a talker and I appreciate his willingness to be open with me.

I have also done a lot of talking with my girlfriends who are so incredibly encouraging and supportive. They listen to me cry and complain. They are also the ones who share my joys when there's a breakthrough, no matter how big or small.

Being aware of his moods (I can usually hear it in his voice on the phone) has been a challenge and yet has been a family saver. If he's not feeling on top of his game, I can prepare myself, give the kids a heads up and emotionally prepare myself.

What does depression feel like? Doug sent me a picture a while back and I don't know the original source but a few points stuck out for me.

• Depression is like a nightmare. I have no control of what's going on.
• I'm never good enough. I'll always be useless.
• It feels like an endless circle of guilt, pain, fear, weakness, failure.
• No one understands what you are feeling.
• Everything you do hurts and there's no getting away from it.
• Things that you used to enjoy, they don't bring any comfort to you.
• It's always feeling tired.
• It feels like it'll never end.

I don't know if Doug will ever be 'over it' but I do know that with medications, dietary change and a caring family, I'm pretty sure we'll continue to make it. It's been a long journey and although I don't think it's over, we've made some great progress. 

Chocolate Chip Cookies - Gluten Free

I woke up on this cool snowy morning with the desire to bake something sweet. With chocolate. Maybe I just wanted something to comfort me and my family as we watch the flurries continue to fall. So here's what I baked today!

Soft Chocolate Chip Cookies

1 ½ cups butter (or margarine)

1 ½ cups brown sugar

¾ cup white sugar

3 teaspoons vanilla

3 eggs or egg substitute

2 cups brown rice flour

1½ cups arrowroot flour

¼ cup finely ground flaxseed

1½ teaspoons xanthan gum

1½ teaspoons baking soda

1 teaspoon salt

3 cups chocolate chips

Cream the butter and sugars until creamy. Add vanilla and eggs, mix together until blended in. In another bowl, sift together the dry ingredients. 

Add to butter/sugar mixture and mix. 

Add chocolate chips.  

Bake at 350° for 10 minutes. 

Notes:

• Because of the arrowroot flour, these will be flat cookies with an aftertaste similar to that of shortbread cookies. Not a bad thing, just so you know.  
• I did have to add a little extra flour because the dough was a little sticky
• I chilled the dough balls before baking
• They won't last long in this house. They are soft and delicious!

Please feel free to try the recipe out and even blog about it yourself. If you do, just link back to me and let me know what you thought!

Copyright: homeschoolingmomof4©

Thankful Thursday

• I'm thankful for eternal life.  Thank you Jesus.
• I'm thankful for my husband who works many hours in a day to provide for us and allows me to stay at home with the kids. 
• I'm thankful for educational freedom. I love homeschooling the kids (most days) and I appreciate the flexibility it allows.
• I'm thankful that Sharpie comes off linoleum with Norwex cleaning paste. One of the big girls left a black permanent marker in Sarah's reach. And she found it. And colored with it. On. The Floor. 
• I'm thankful for my umbrella clothes line so my clothing can smell fresh. I do wish the weather would turn a little nicer so that my hands wouldn't freeze while hanging wet clothes outside.
• I'm thankful for surprise flower deliveries from Doug. Last week he sent me a bouquet and it was one of those small things that just made my day a little better.
• I'm thankful that the sun is rising earlier and earlier in the mornings. I am eagerly waiting for my bike to come home so I can resume my early morning rides with Joshua.
• I'm thankful for the many gluten-free options that are out there. I love eating gluten-free and it's nice to know there are so many places that provide those food alternatives.
• I'm thankful that I have four amazing kids who I'm proud of. I have been so blessed by them!

Homeschooling Flexibility...

My older three kids have passed their current grade in math and have all moved on to the next grade (4, 8, & 9). As the school year begins to dwindle down, I see their progress as the opportunity to take advantage of 'field trips' while places are still quieter than they will be this summer. Yesterday after the required time of math was completed, we packed up and went to the pool for a couple hours. It was a little busy due to a few swimming lessons but it didn't last long and soon it seemed like we had the pool to ourselves. This also happens when we go skating, to the Telus World of Science, playgrounds or other places like that.

I love the things that we can do in the middle of the day. It's what we've gotten used to and has become our way of life.

Joshua will be doing a pilot project for me in the fall as he will be doing a few subjects on-line in a virtual classroom. He's dabbled at the thought of attending high school and although we haven't made the decision yet, I want to prepare him as best as I can. If this online deal works out, Andrea will join him in her grade 9 year for 2014.  She has no desire to attend a public high school at this point but I think the on-line learning will be a great transition for her. Arianna will continue what she's doing. Blasting her way through grade 4 math right now and next year, we'll start working on some writing strengths. Sarah, at this time will not be doing anything formal, even though she'll officially be kindergarten age this June. We'll continue to work on her hand-eye coordination, some pencil holding skills, simple matching, colors, and shapes. Most of that will be done through her regular days full of playing. I keep reminding myself that she is approaching preschool age as far as development goes so therefore, her learning must be age appropriate in that sense.

We're down to our last eight weeks of school and that's really exciting for me.  We did another year and I'm really proud of us!

Another Reminder...

... that I am the momma of a special needs child.

Today started out as a typical Sunday. Lots of hanging out, reading books, watching {more} Curious George... that kind of thing. I noticed Sarah was going slightly downhill at Grandma's house when she spilled a bit of tea on her clothes and insisted, through tear filled eyes that we wash them. Thankfully, we could toss them in the dryer for a bit and they were fine.

About five minutes into the drive home, she began to sob uncontrollably, desperately asking for a hug from me. Once we got to the house, she quickly found her beloved pyjamas and ate a banana with a peanut butter sandwich. The evening was going fairly smoothly... until bedtime. We are always in the process of trying to get Sarah to sleep in her own bed (yes, she still has sleep issues and frequents our room and bed). So last night was one of those nights where I wanted to try. Again. To say she was unhappy about that is an understatement. She cried. A deep, throaty cry that sounded so sad and desperate. I have never been a parent to let the kids cry it out so after just a few minutes (maybe 5), I went back to her room to try and lay down with her. She began to cough and proceeded to throw up her entire supper. Throwing up for her is terrifying. She has no idea what's going on with her body. She gets panicky and agitated which causes her to cry even harder.

A circumstance like that often gets me to thinking and asking all kinds of questions.  Was she over tired at Grandma's? Is sleeping alone THAT stressful? What happened that made her so upset? It just seems to me (and maybe I'm wrong) that most other kids could have coped better.

Doug and I created a game plan. She gets to sleep in our room, in the pack 'n play. I'm hoping that she'll feel safe and comfortable by simply being close to me without needing to touch me. I'll place some soft pillows around her to give her that secure feeling. Then we'll move the playpen to the other room and hopefully transition to her own bed eventually. Doug said it really well last night when he told me that every time we do something like this with Sarah, it will be like starting from square one. She doesn't remember last year when she slept a full two months on her own, all night, in her own bed.

This gives me cause to continually pray for wisdom and patience as we need to parent Sarah so differently than the other three kids.

Philippians 4:13
I can do all this through him who gives me strength. 

Just Passed My...

Wheat Free Baking

When I embarked upon my wheat/gluten free changes, I was a little worried about what or how I would ever bake again.  I was surprised to find a plethora of resources that allow me to fullfil my desire to bake yummy treats and still remain wheat free.  

Yesterday's cookies were a huge hit!  They are butter, wheat/gluten and egg FREE!  I took the recipe from Stephanie Cooks Blog (not me) and modified it.  

Butter-Free Chocolate Chip Cookies

1 1/2 cups GLUTEN FREE ALL PURPOSE BAKING FLOUR

1 tsp xanthan gum

1/2 tsp baking soda

1/4 tsp salt

1/4 cup white sugar

1/2 cup brown sugar

1/2 cup vegetable oil

1 portion of egg replacement product

1 tsp vanilla

1 1/2 cup chocolate chips

Directions:
Preheat oven to 350 degrees F.
Stir together flour, soda and salt. Set aside.
Whisk together both types of sugar, oil, egg and vanilla. Add flour mixture to oil mixture and stir just until blended. Stir in chocolate chips.
Using a tablespoon measure, scoop up dough and shape into tight rounds of about ¾ to 1 inch. Space them about 2 inches apart on two ungreased cookie sheets. The mounds should be bursting with chips. Bake for 8-10 minutes. Cool for 2 minutes on cookie sheet, then transfer to a wire rack to continue cooling.
Makes about 2 dozen

The second recipe was made this morning and I tackled muffins.  Again, they were AMAZING!  I don't know where I got my original recipe but here's what I did today.

Cinnamon Streusel Muffins

2 cups brown rice flour

2 cups chickpea flour

3 tsp xanthan gum

1 cup white sugar

1/2 cup brown sugar

2 tbsp baking powder

2 tsp cinnamon

1 tsp salt

1 1/2 cups milk

1 cup melted butter

2 tsp vanilla

2 portions of egg replacement (or 2 eggs)

Combine the dry ingredients and make a well in the center.  Mix the remaining wet ingredients.  Add the wet to dry and mix until just moistened.

Add to muffin tins (makes about 24)

Sprinkle tops with a mixture of 1/2 cup brown sugar and 1 tsp cinnamon if desired.

Bake at 400* for 17-20 minutes

A Memory...

As I was getting ready for my day this morning, my thoughts traveled back in time to when my siblings and I were much younger.  As memory serves, there was always music on in the house.  Playing through the gigantic speakers with the occasional scratch sound from the record that was spinning.  Sundays were full of old style hymns from Sandi Patti, Steve Green or other church choirs.  Every summer we'd take a three week long vacation and travel down to Penticton, BC and stay at our favorite and much anticipated campground.  It was kind of like a home away from home.  In the van, there was always music playing through the cassette deck.  We grew up listening to the music of the 50's and 60's.  That's what dad wanted to listen to and I don't think there was even much opposition from us kids.  One recording artist that we'd listen to was Neil Diamond.

As I was thinking about his music, my thoughts moved on to a time that I was going to babysit my cousins while my parents, aunt and uncle went to his concert. I was really disappointed because I would have LOVED to go.  My parents thought I was too young to want to see him and that the music was geared more for people their age. The plan was for me to get dropped off at my aunt and uncle's while my parents headed to the concert to meet them there.  Shortly after I got in, my littlest cousin fell out of her high chair and bumped her head on the floor. My aunt was quite worried so she decided to stay home and I went with my uncle. The look of surprise on my mom and dad's faces when I showed up is a picture that I'll never forget. I was certainly one of the younger audience members (I would have been around 16 years old) but it was so much fun!

Fifteen Months and Waiting

On January 4, 2012, Sarah had a series of blood work done to determine if she has some type of chromosomal 'disorder'.  You can revisit that crazy day at this blog post.  We were initially told that we'd hear results in 9-12 months. At Sarah's pediatrician appointment this past February, the doctor informed us that we could expect to hear something 12-18 months later. Well that's considerably longer than what we first thought.

So, it's been 15 months and we just wait. I've sort of stopped worrying about it. Results or another diagnosis wouldn't change who she is or what we think of her. Perhaps it would give us something to work on and maybe even give us a clearer idea of what the future holds for her but until we know more, we just keep taking it one day at a time.

One Of Those (Long) Days

Well, after the rough night and very early morning, thanks to a certain four year old, I decided that school just wouldn't happen today. I figured I'd be short tempered and that it would be best not to try. So after some tidying up and getting the laundry going, the kids and I headed to Wal Mart to spend their gift cards that they received at Easter. Once our shopping was done, we headed home for lunch and I then spent the remainder of the day snuggling with a very tired little girl.  Around 3:00, Sarah began asking if she could go to bed. She didn't nap and I managed to stall her till after supper and finally she was able to settle down into her bed.

Sometimes there are just those days that we get by on pure adrenaline (and large quantities of caffeine) and we are grateful when the sun goes down and we can put it behind us.

I've Been Here Before...

After a rough few days, I was greatly encouraged by this blog post written by Rebecca at Mom's Mustard Seeds.  I would LOVE to be able to write with the same kind of faith as her.

Dear Mom Who wants to Run away,

I know that feeling.  That feeling of wanting to pack up your husband and children and run away to some desserted island or a mountain top somewhere.  Just a chance to get away from the day to day non-stop barrage of life that seems to take your last breath.

The days can be long when you need a chance to just catch your breath.  When your 911 friends are busy and in the midst of life and you can’t just seem to catch a second to sit down and drink a hot cup of anything because it cools down as the arrows are streaking across your life.

This life – this life where we are judged and we  just want to focus on Christ and the beauty of the world He created.  But so many things pull our attention and it would be heaven to just go to the bathroom without the pinging of a computer or the ringing of a phone (and yes, even hands that only seem to knock when ‘that door’ closes).

While some days, the ability to die to self and live for the beautiful purpose God created us – to be awife and a Mom- may make us ‘feel like’ we want to run from the things in our homes that truly bring joy, we can sit back and realize -it’s not the children we desire to run away from. No, they are blessings and they deserve and need our full attention.

It’s the world that pulls and tugs and wants us to feel less than so it can feel more than.

So many things wanting, needing, desiring, taking – and it generally all boils down to letting go of the things that bring sorrow, guilt and despair into our lives.  Generally, all of those things spring up from that deep-pride issue. That pride thing that makes us want to get up and shout ‘look at me look at me’.  It can make us feel invisible in the day to day grind of loving the people around us and we can begin to feel like no one sees – no one cares and yet…  In the midst of those moments where we begin that self pity party – it’s so important to remember – we are not what we feel.  We are created by God and filled with the Holy Spirit.  Our emotions are not who we are, they merely give us a ‘feeling’ and at all times, we need to remember “He sees what you are doing, m’dear.”

Those words, recently shared with me as I sat pondering a speaker at a retreat.  I was taking a peak around the room, praying that every sweet Mom would hear the words and they would transform all of us.  My friend, she knew the battle in my heart and knows the depth of my desire to help others.  That help, I often hide, I bottle it up and dare not let anyone know because of that old friend pride. In those words, she reminded me – HE SEES ME!

And that’s all I want – is for Him to see me.  To know that all I do –  I do for the Lord.  I am reminded of this need and desire as I bury myself in Col 3: 17, “And whatever you do, in word or deed, do everything in the name of the Lord Jesus,giving thanks to God the Father through him.” and Col 23-24, “Whatever you do, work heartily, as for the Lord and not for men, knowing that from the Lord you will receive the inheritance as your reward. You are serving the Lord Christ.”

In that, I find the ability to release my need to please others and grow the desire to work only for the praise of God.  And then, I find  the power to crush pride. That power lives within me and all who have  accepted the savior. It’s beautiful and peaceful.

So, In those moments, where your work becomes a beautiful sacrifice you know – Yes, he sees you.  And while we are not perfect, he desires a relationship with us.  He sees all of us, sweet mama and he knows when we get caught up in working for the world  We know it, too. We get that tied up pinched feeling in our tummies (and sometimes on our faces.)

When you’re ready to pack your bags and your family and run away.  Stop.  Remember, you are filled with the Holy Spirit.  The evil one is tempting you to run away from the fight.  That inner fight to die to yourself so that Christ can shine the light and the beauty.  Don’t hide when you mess up. Let the one who created you carry your fears, your troubles and anything negative to the far winds.  He wants you to put his yoke upon your shoulders and live in freedom!

Fill those moments with love and laughter.  Surround yourself with friends and family who are growing in Christ – knowing that none are perfect and remember – we are all on a journey.  So, if you pack those bags, make sure you’re heading in the direction Christ wants you to go.

and remember, we’ve all been there…..

Permission granted to repost.

Just So We Know...

In support of all my friends whose children are autistic

Monday's Musings

Well, spring break and Easter are over so my older three kids are back to the schooling grindstone! I am happy to say that each of them has passed their math and have moved on to the next grade.  If our schedule follows as it does most years, then we have another 8-9 weeks of school and then we break for the summer. Days of bike riding, walks, trips to the donut shop or Dairy Queen for an ice cream.

I love hearing the water drip off the house and down the street... it means that spring {might} be on it's way. Since the snow first fell last October, it seems like we've been living in a forever winterland. I think I've had just about enough snow now.

This was a snowstorm from March 3rd

Arianna has had enough winter too!

Tomorrow Joshua will be at the orthodontist for an initial visit to see what work needs to be done.  I feel bad for the boy who never had a soother, stopped using the bottle at 12 months and is destined for some major dental work. Memories of my own braces years are coming back to me now...

Easter was a busy weekend for us with us attending church on Good Friday to see Andrea preform in a skit that was put on.  She did a great job acting and I was a really proud momma!  Afterwards, my dad and Cathy, my sister and her kids and my brother came over for coffee and snacks.  We missed Kevin Melanie and Paul but hopefully soon we can all get together again!  Saturday's supper was at Aunty Cindy's with all the traditional favorites: cheesy potatoes, bean casserole and ham. We went to church again on Sunday to celebrate the resurrection of Jesus Christ. For brunch Doug made a big batch of waffles from a special Waffle House mix that our friends Scott and Lelia sent up to us shortly after our vacation to Alabama. A small part of us felt like we were with our southern friends again. Dinner was at Doug's parent's house which housed the usual large crowd of family. Unfortunately by this point in the weekend, Sarah was in meltdown mode. She spent a good part of the evening in her grandma's bedroom watching TV with either myself, Doug or Andrea. When I got her settled into bed, it didn't take her much more than five minutes to fall asleep.

I received an encouraging Facebook message this morning regarding the respite care I posted about yesterday. Once things fall into place a little more, I'll share about that. 

Today was what I dubbed a recovery day. Housework, laundry, school... the regular day to day stuff. The kids all benefitted from just hanging out at home and being together.