Sunday, April 28, 2013

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!

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