Celebrating ten years of life!

 Friends, join me in celebrating a decade of this phenomenal child's life!

Ten years ago, I was bracing myself for Sarah-Hope's birth with not much more than a memorial service planned in preparation. She was in such a bad condition in the womb, there was no reasonable expectation that she would survive. 

 

But against all odds she did, and what an amazing young girl she has grown into! She has incredible determination, engages deeply and is such fun! 

I can't adequately describe how grateful I am for Richard and Libby on this journey. Richard has led me in embracing and celebrating... and stretched my capacity to navigate complexity. Libby is a well of life, pure joy to the soul, a genuine friend and delight. Our family life as the four of us has only developed more recently (prior to that we were graciously held together by extended family, friends and community as we lurched from crisis to crisis), yet I'm so grateful it has and look forward to how the story unfolds.

What a provocation Sarah-Hope's life has been - for me; scientific, educational and faith communities; neighbours, family and friends. May she continue to point us to the One who gave her life against all odds and who will surely continue to provide for and sustain her.
 

 

We've applied for a service dog!

Sarah-Hope has been through various animal stages. First she wanted a horse. I made it quite clear that that would not be in the realm of possible. I think she thought that asking for a bunny next would be a safe bet as a couple of neighbours in our complex have them. But I didn't budge on that either. She was then getting very interested in dogs and I did feel that a service dog could be a really special companion for her one day. You would typically only get a service dog when you're 18 and can handle it independently. However, Honey's Garden for Medic Alert Dogs opened up a new possibility - because the person needing a medic alert dog (for seizure response) could be a child, they use a model where another parent / family member can be the main handler. 

Sarah-Hope has applied for a multipurpose service dog. This means that the dog would be trained to accomplish specific tasks for her. In her case, it would be largely to assist with carrying and fetching given that she doesn't have arms. 

I called up Lucy Breytenbacht, owner of Honey's Garden, and she agreed to meet us in a park with the dogs that were being raised at the time.

We took a while to get our application in to Honey's Garden, so Sarah-Hope started getting herself ready by training her stuffed dog, Charlie.

After a successful interview, Sarah-Hope has been matched with a beautiful golden labrador, Barley. We are attending weekly training sessions and our first weekend visit is coming up this month. All things going well, Barley could graduate and come to live with us in around the middle of 2022. It is a blessing that we can slowly adjust to having a dog as part of our lives - there will be plenty of updates to come!

The comforting company of cousins

So many have shared with me about the gift of extended family. I live in the same city as my sister and both of our first born children have special needs. While many assumed this would mean that we would be even more of a support to each other, the truth is that we were in such crisis for so many years that we had very little capacity to offer each other anything. When we have the privilege of being away together, the multiple special needs diets, mobility needs and behavioural challenges that we're trying to balance on top of the normal demands of young children adds additional strain. 

But that has recently changed. Our girls are now all a bit older, and they can play together in the most beautiful ways.... they have formed their own little gang.

Sarah-Hope's superb sibling

Even if I had heard it before, it's never quite the same as experiencing it - it is not easy being a sibling of a child with additional needs. But today Libby blew my mind.

It was her idea... she decided we should have a special "Sarah-Hope Day". Just because. She would hand make gifts and cards for her. We would bake something she loves. We would make a sign declaring the occasion. We would do things that Sarah-Hope liked. Just because. 

Libby didn't do it with the hope that we would then 'get the hint' and do one for her. She never mentioned that then or to this day. She just decided to celebrate her sister.

 

I've been much more intentional over the last five years to ensure that Libby gets some separate time with me, Rich, her grannies or special friends. These are times when she can enjoy a greater range of possibilities than exist in our home - sometimes more active play or some dedicated individual attention or a different social connection. I've seen her sense of self develop which has been a gift.

But as the empathetic and compassionate person that she is, she really does delight in being with her sister. She'll make anything fun... like taking over Sarah-Hope's walker (it really isn't for you, Libby!)...

Partake in hypnotherapy...

Nap with her sister...

Play for hours in various imaginary games. I had to laugh recently when the girls were playing 'paralympics'. Libby is usually very accommodating playing dolls and dogs with Sarah-Hope... but in this game she insisted that she was blind, with a guidedog, and Sarah-Hope was her helper that ran with her in order to win a medal! I don't think Sarah-Hope quite knew what to do not getting to be the 'disabled' one but she knew her place in the game that day!