Friday, June 26, 2009

Looking Up

So, summer has started! We've had some hot days here in Niagara, but we are thankful it is no longer winter. The days have been filled with bike rides, park visits, and water play in the backyard. Last week, we were blessed with a visit from friends from Minnesota - Carla and her four kids, and this week, cousin Abigail came over.

Funny how kids say exactly what they are thinking. As adults, most of us have filters that prevent us from blurting our thoughts (most of us have these filters). I (Sara) am reminded of last week when Carla's kids crowded around Rachel's crib, asking questions about her. I love that - even when the questions are "How come she doesn't talk, walk, etc.?". Sometimes, it is easier to explain to kids what our two youngest are all about. Maybe it's because they are much more willing to accept the answers. Carla told me later that her kids said they thought Rachel would probably do all those things in heaven. Awesome.

Abigail said our house is a busy place. She's right. Lots of grown-ups coming and going, but it is a good thing. We are enjoying life because we are supported with the every day stuff. With help last week, we were able to take our MN friends touring around St. Catharines. With help this week, I was able to take Em, Soph, and Abigail on a bike hike, and we were also able to take Rachel with us to a splash pad. She loved the water - and loved watching all the community kids screaming and laughing. Sure, a few kids stared at her, but hey, it is a bit unusual to zip through the splash pad in a chair.

Janneke is growing and maturing. She's lost that newborn look, and she is starting to find people and toys with her eyes. Every so often, we see a smirk from her, but no full-out smile yet. She has several different cries, which is great. Janneke is like Rachel was - but with sound. Sometimes, really loud sound. There are several appointments coming up for her, but we are enjoying the short hiatus from Mac at this time.

I started running with Rachel this week. We've done 5K races in the past, so we are gearing up for more. For our first run, she was so alive and excited! In the years past, she would sit still and show enjoyment through her eyes... but this year, she was shrieking, laughing, and moving her legs and arms. She was so animated for our run that by the time we came home, I was wiped - and so was Rachel. Something else new for Rachel - she was able to look up and backwards in her stroller while I ran. She did this several times during our run as if to check for me. I would say, "Yup, Mum's still here" and she would laugh and look ahead again. Reminds me of how I often look for God - and He is more faithful to me than I ever will be to my child.

Postscript: Dates to remember: July 17- Shakespeare in the Vineyard; July 19- Janneke's baptism

Saturday, June 13, 2009

may we be so bold?

Life is pretty stable right now in the Pot home. Sophia has just mastered her two wheeler, and Emily has recently discovered the joy of fishing, thanks to a class trip at Zooz. The school year is winding down for all of us, and our attention is slowly being pulled towards thoughts of summertime fun.

Rachel is healthy and smiling although she (and her parents) do not enjoy the new AFOs (splints) for her feet. Her feet are unusually small in proportion to her body, and even though she had the surgery to lengthen her heel cord, the feet are slowly turning in again. (She was born with severely clubbed feet.) Our hope is that with the new splints and her stander, her feet will allow for weight-bearing.

Janneke seems to be healing (finally) from her cold, and she continues to progress. She has not smiled yet, but she is certainly aware of the noise and excitement around her. She cries sometimes to be fed, and she continues to suck on her soother when coached. We are not sure that she will take a bottle, but there is hope that she will eat solids in time. Thicker liquids/stuff are easier to manage than the runny kind.

All this work for Rachel and Janneke with physio therapy (gross motor skills) and occupational therapy (fine motor skills) is directed through our specialists at the Niagara Peninsula Children's Centre. We are at the centre weekly with Rachel, and in mid-July, we will also bring Janneke for her sessions. We could not manage our girls' needs without the help of our team at the centre. Back in 2006, before Rachel was born, we had no idea this place existed. By October of 2006, we were wondering how we would function in raising Rachel without the place! Now that both Janneke and Rachel rely on NPCC's services, we will do as much as we can to help the centre.

And here comes a bold request: If you have yet to plan some summer fun, consider attending Shakespeare in the Vineyard this July. On July 9, 10, 11 and 16, 17, 18, the Merry Wives of Windsor will be performed at the Henry of Pelham Winery. All ticket proceeds will go to support the Niagara Peninsula Children Centre. Check out the link on the right for further details.

Many of these social services like the NPCC receive funding from the government of Ontario, but they do not receive enough to account for increased expenses, the long wait-list of children requiring services, and the number of therapists children like Rachel and Janneke require. This year, the centre had to cut back some of the jobs, which creates even more of a wait list. It's not the auto industry struggling with a stinky economy; this is about a child's life. The trouble is, these little ones are growing up as time passes. The time that is lost while they sit on the wait-list is a huge disadvantage for their growth and development. Janneke is at NPCC much sooner than normal because her sister is already in the system. But there are many new babies who are home from the hospital and have their own struggles with development - and who can help those parents? And it is not just babies with special needs, it's also preschoolers who need speech therapy or assistance with walking. It's crazy to think that saving money by limiting the funding for NPCC can be a good thing. Those children who do not get the intervention now will only require more intensive therapy later. A savings now will only cost more in the future. Yes, this is our rant.

But really, if you have the time and money, consider attending this event in July. (You'll feel extra classy sitting in a vineyard with a glass of wine -and supporting the Pot girls, our friend Ella Warkentin and many other great kids.) If it's not this event, there are many more to come. We're making arrangements to go on July 17 (Friday). Wanna join us?

Monday, June 8, 2009

Hands On

I had a piece of humble pie with a good dose of laughter this morning. I happened to see a friend who lives eight doors away from our kids' school drive her kids - instead of walk. I teased her for using the van instead of her legs. She got the upper hand when she told me she was going from school to the grocery store so she could make me a meal tonight! Oops. Humble pie and laughter are a good way to start a Monday. : )

Yesterday, we took the four girls to London to celebrate nephew Kyle's baptism and visit with some good friends, Eric and Lisa. We came home tired but thankful.

Know what I loved about yesterday? The way Luke tickled and rubbed his face on Rachel's legs... the way Grandma got down on the blanket and started gentle physio with Janneke... the way Mattie immediately stuck his face in Rachel's face as soon as we arrived and then threatened to spray her in his water fight... the way Josh got down and checked out Janneke and tried to help her with her soother...

I know it's hard when you meet people of all ages with special needs; you aren't sure how to respond or act. What I loved about what I saw yesterday was there was no inhibition, no awkwardness. I love it when others see beyond the chair and the feed pump - and see the kid.

Jesus said, "Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these." When he placed his hands on them, he went from there." Matthew 19:14-15