an update

And the music goes on and on....

At our last music therapy session, Mendelt was allowing Rachel to sense the motion with playing the notes.  Rachel was squeezing his arms and taking great delight, as evidenced with her voice and her facial expressions.  

In a break between songs, Janneke came slowly up to the piano in her walker, crossed her arms over her chest and with a stoic expression, stared down Mendelt.  The nurse, Mendelt, and I watched to see what she would do next.  She then let out a yelling sound, walked over to the piano and began to touch a key, as if to say, "Oh, you just watch what I can do!"

After a brief duet (or trio?), she walked solemnly away.  

My only regret was that I did not get a good set of photos or video.

* * *

I haven't added to our blog lately.  Honestly, there are a lot of emotions that have surfaced again in dealing with our family's circumstance.  I prefer to sort through my feelings before I blog.  That's just me.  

A few things are affecting my perspective lately.  

Every so often, the reality of what we can't do in/with our family supersedes my determination to see what we can do.  The bittersweet becomes bitter.

The other day I saw a online sign that said something like live out your dreams; follow your passions; if you don't like something, change it.  I've decided signs like that don't bring cheer when you are keenly aware of your limitations.  Signs like that almost make me bitter.

Sometimes instead of pursuing our dreams, we might need to let go of what we want and accept the new direction we are given, where the passion requires hard work and tears.  

It is hard not to be envious of what lies beyond my reach when I am parenting four children, two with complex needs - and the details of that admittance are a private sorrow.  

I am trying to see the purpose - the beauty that can be achieved - through the struggles and the tears and not get stuck on waiting for the answer to "why?".

And then when I hear of others' struggles and recently the deaths of two little ones with complex needs, I am reminded of what it means to be grounded in and living for the Creator.  He did not mean for his creation to be distracted by what is beyond reach; He created us to find joy in the simple things within our reach.  

More importantly, He sees us when we think we are unseen by others or alone (picked that up from a recent devo on Hagar).

* * *

Speaking of perspective...

I had a chance to take Emily and Sophia with Carolyn and her boys, Clay and Gavin to the Artist's Project in Toronto this past weekend.  Ralph and I have had many opportunities to tag along with Floyd and Carolyn at different art shows, but this time, it was the girls' turn.  And they were thrilled!

It was awesome to watch both Emily and Sophia's eyes go wide with excitement and surprise as we walked through the booths at the AP.  There were so many different styles and mediums; I don't think my girls quite knew what to do with all the possibilities.  They went home inspired!  They also went home with a business card from almost every booth- about 200 in total.  (I told the amused artists that perhaps my girls will be future customers, so be thankful they are collecting the cards.)

It is so hard to get kids to stand decently at a fancy art show, particularly if they are best of friends and feel comfortable around the artist in whose booth they are posing - Floyd Elzinga.

* * *

And the perspective on Rachel and Janneke's health?  Hopeful.

We continue to monitor their blood sugars as well as their behaviour while still being continuously fed. We hope for some answers eventually, but we are learning quickly that this may take longer than we thought.  We are thankful for our dietician; she's been very encouraging, finding out as much as she can from her connections within the medical world.

It has been said to us a number of times in the last few weeks that because our children do not have a known or familiar diagnosis, we fall into a gap - between resources and medical teams.  In my recent experience, it seems that a doctor or related staff person is comfortable within their own tidy box of specialty; when children like mine come their way, they would rather pass the file onto another person.

Within the context of my hospital visits, I have been told my girls' patient history and needs make them (the staff) anxious.  I have been told that I will have to keep the appointment brief because there are other patients to be seen.  I have been told that this would all be easier if our children had a diagnosis.  I have been told that I am not privy to the resources and training available regarding blood sugars because my children are not officially diabetic.  

Oh, what I would like to tell them!

This week, we are off to visit our genetics team at SickKids.  We shall see what they have to say.  Visiting with the genetics team has actually been one of our favourite hospital visits because they usually surrender two hours or more to give the whole family complete attention.  They seem to be one of the few teams that sees the importance of family-centred practice and a holistic perspective of the patient (instead of tidy little boxes of specialities).

For now, the girls are sleeping.  Soon this feed will finish and another four hour feed will start.  We are thankful for the sleep that comes intermittently - we know that God will give strength for the next day.  

May there be peace for your day - and your week.