Sunday, March 20, 2016

pneumonia or pie?

Last week, we were hesitatingly preparing for a pie party to celebrate Janneke's birthday.

Hesitating because both Rachel and Janneke were dealing with colds and fevers that weren't going away.

Janneke's birthday found us at Mac instead - in the ER, getting tests and meds for pneumonia. The pies were consumed slowly over the week by their big sisters, and we are thankful that 7 days later, Rachel and Janneke seem to be on the mend.

Somewhere in the middle of this foggy week -due to lack of sleep and worry over the kids, my first article was published. I have been given the opportunity to write about faith and disability as it relates to our family.  You can read the online version here.


Sunday, March 13, 2016

Happy Birthday, Janneke

it's an older photo but a favourite...

Seven years ago, on March 14, Janneke Grace joined the Pot family.  Ten years ago in March, we learned of Rachel's abnormalities while she was still in utero.

March is a month filled with memories that are both sweet and complicated.

Perhaps it's like any intense moment in your life - that you can recall specific details as if it were yesterday, no matter how much time passes.

There are times when we reflect together on the births of the girls.  It's almost as if we need to revisit those moments from time to time to help sort the rest of the years that follow. The birth of Janneke spurred a sorrow that had been hibernating since the birth of Rachel. Though we celebrated the new life of our little Janneke in that birthing room, her presentation of special needs broke the spirit we had bolstered in maintaining normalcy with Rachel.

Seven years ago, Janneke Grace was born in Grimsby, transferred to Sick Kids in Toronto, and later sent to MacKids in Hamilton.  Janneke finally met her older sister, Rachel, six weeks after her birth. It was a dizzying time in the Pot family, and we had a lot to process during that time. Today, we sat with Em and Soph and watched an old slide show video that Ralph put together shortly after Janneke's birth. Seven years later, and we are still processing.

Happy birthday, Janneke Grace. Can't believe you are seven already.

Grace finds beauty in everything.

Sunday, March 6, 2016

back in the saddle

I received the gift of three days in Alberta last week to be with extended family as we celebrated the life of my aunt Marie. We did a lot of talking, laughing, walking, crying, and eating.  It was good - hard but good.

Three of us ran together on the morning of the funeral. Running runs in our family, and Aunt Marie would encourage her kids not to give up by telling them their feet were saying, "Keep on going, keep on going." And so we kept on going for the 8 miles between two of the family properties.  It was a beautiful morning, and the conversation was rich. I realize not everyone enjoys a run... but it set an appropriate tone for the day. 

I am thankful once again for the gift of family and family memories that spur me forward.

* * * * * * * * * 
This past week, we had our once-every-couple-of-years visit with the genetics team at SickKids Hospital in TO. Though we debated taking public transit, we drove our van in.  It was the same day they forecasted a Big Storm (snow storms are almost proper nouns now, given all the sensation with media).  I guess everyone was so concerned about the Big Storm that they stayed home. We drove with sunshine, little traffic and on bare roads.

We were able to combine our visit with a peek at our niece Mariah (behind the till) who works at the Starbucks in the same building as our genetics team. That was not known until we walked past the coffee shop before the appointment. It was great to see her - and have something to lighten up the otherwise tough afternoon.

Our genetics team is great, and they are always encouraging with each visit, but admittedly, it is hard to have every inch of your kids' bodies examined, documented, and discussed - particularly the abnormalities. It is way easier to walk into a livingroom filled with family who immediately point out you have Uncle Frank's nose or Grandma Jan's smile.

I appreciated how the team set a positive tone to our appointment by first sitting with us in a room filled with sleepy sunshine and asked what the girls can do. They wanted to list all the positives... and every word was noted on the file. It was only after they asked, "Is there anything else you would like to tell us about the girls?" when they started examination of the anomalies (problems).

With each genetics appointment, we are reminded our girls are not typical-normal. They may never be diagnosed, and they may continue to catch us by surprise with their development. We try not to be too discouraged by the realities of their anomalies, but when we come home from these kind of appointments, I experience an odd two day lull where I feel disconnected from reality. I have a hard time initiating tasks, and I spend too much time thinking. 

By the second day, the fog fades and the feet are on the ground again.

"Keep on going, keep on going."