Fine motor fine tuning

We’re so grateful to the Lord that yesterday’s EUA went well! It was a long (hungry) day for Cam because he went into theatre later than normal, but Murray and Jacobus were both really happy with his eyes. The stitch in his left cornea came out easily, his corneas and retinas are still looking healthy, and his pressures are fine: 19 in the right eye and 16 in the left. The contact lens prescription for his left eye has changed a little, which we expected. He recovered from the anaesthetic without too much trauma and ate a good supper last night. We really appreciated people’s calls to find out how it went! :)

This morning my Mom and I took Cam to Anri-Louise, his amazing occupational therapist, for another full assessment. She has already met with his teacher at Heavenly Babies to train her for working with a VI toddler. We spent a good hour and a half with Anri, and Cam loved every minute of it – so much colour, so many toys, textures, sounds and surfaces…! Anri-Louise says that he is exactly on track for an almost-fourteen-month-old in terms of language and gross motor skills (i.e. he is walking and talking like he should be – and understanding far more of what we say than we realise!), but he is about two months behind when it comes to his fine motor skills, because that kind of dexterity relies so much on visual feedback, and he is having to rely mostly on touch and sound. So, we have lots of daily therapy ahead of us to ‘catch him up’. Please pray for us, for wisdom to know just how to work with him and for discernment to recognize opportunities to practise these fine motor skills with him in day to day life. It’s easy for me to get overwhelmed and to feel as if I should be working with him intensively 24/7, so I need a sense of calm and perspective, and just to keep on doing the next right thing.

(The specs that he’s playing with in the photos aren’t his. He’s just learning what they are and where they should sit on his face – part of ‘object permanence’) :)

A very tiny stitch

On Friday 29th May, Cam goes in for another exam under general anaesthetic, and to have the stitch in his left cornea removed (from his last operation, in April). Murray will be there, to refract again because his contact lens prescription will no doubt have changed by now. They will also check the pressures in his eyes.

The pics are of Cam playing in the garden, and in the garage, and down on the fields. :)

‘For everything comes from him and exists by his power and is intended for his glory. All glory to him forever! Amen.’ – Romans 11:36

It’s been a year…

(The following post is rather sentimental, and far more about Cam’s parents than it is about Cam. I only include it for the possible encouragement of folks who might be walking a similar road to ours.)

It was on the 20th May last year, when Cameron was six weeks old, that we found out about his eyes. It was the worst day of our lives.

Murray said to me the other day that he will never forget how I cried in the passage outside the doctor’s rooms, and that he never wants to hear me cry like that again. I know that he has certainly cried more tears in the last year than he has in the preceding three decades of his life. And yet there is so much to celebrate.

I don’t want to dwell on the things that have been hardest for us or that have hurt us the most. It’s terribly easy to slip into the steamy, satisfying bath of self-pity, and soak there in the deception that such wallowing will soothe our aches. Suffice it to say that we have always been all about adventure. And zest and laughter and slurping life like a milkshake down to the last drop. Contentment and celebration came so naturally – part of our DNA. My spirit used to soar at the smallest manifestation of grace or beauty or goodness. One of the hardest things was getting used to a heaviness that would – and still does at times – blot out the brightness. A friend of ours who has been through something similar with a child of hers said to us that it takes five years to ‘get over it’, but that she still cries from time to time. I often wonder if I’ll ever feel completely like my old self again, but I cling to the promise that He will restore my soul (Psalm 23).

But let me move onto the joy. When Cam was born a fathomless chasm of love opened up in my heart. He is so much fun to live with, and he has brought us even more laughter than tears. I wouldn’t for all the world change a single thing about him.

In terms of his eyes alone, there is so much to celebrate. To think that he was born blind – all he could see was light and dark – and now, with some coaxing and concentration, he can pick a tiny silver ball (the ones you use for decorating cakes) off my hand. He is an independent little soul, almost running, confident to explore any environment all on his own. As we’ve seen him develop over the past 13 months, so many of our fears have come to nothing. He has already grown into far more than his initial prognosis suggested was possible. But of course, with our God, all things are possible.

As his parents we have also learned a lot. Besides the mountain of academic knowledge regarding visual impairment that has loomed before us – sometimes encouraging, sometimes scary – we have experienced profound heart changes. I think Cam’s situation has given us a greater capacity for understanding the pain of others. Things that used to warrant an ‘Ag shame’ from me now often overwhelm me with an aching compassion. Despite our many questions, and the disappointment of prayers not always answered in the ways we think they should be, we have been driven deeper into God. He has used our pain to clutch us to Himself, and I am aware that one’s life speaks loudest in times of suffering.

In John 9, when Jesus’ disciples ask Him why the man was born blind, He makes it clear that it was for God’s glory. That’s it. Reason enough. I recently heard the glory of God defined as ‘the sum of his magnificent attributes and the eternal fame of his mysterious ways.’ How incredible, how awesome, how staggering that our God would make a new little person, with a special pair of eyes, to display His glory, and to make much of Christ in a world that is blind to the truth.

I am so grateful for Murray. There is no one with whom I would rather have gone through this past year. I am so grateful for our family and friends who have sustained us, ‘holding up our arms’ the way Aaron and Hur did for Moses when the pain was too much for him (Exodus 17). I am so grateful for Jacobus Pauw: Cam’s doctor, a friend, a man of God.

So, a year later, as the crisp beauty of winter sets in again, we are content and striving to just keep on doing the next right thing. As my friend Rebecca says, there’s always the future.

So many people giving so much of themselves...

Last week my Mom went to a conference in Joburg called the Road Map for the Child with Visual Impairments. The speakers were all experts in the field and the topics covered were incredibly relevant to our situation. My Mom took copious notes, collected handouts and networked superbly, gathering the phone numbers and email addresses of all the amazing people who shared their wisdom and experience. When my Mom had shared all that she’d learned with us, Murray and I were overwhelmed by the realisation of how many people in this country are dedicating their lives to blind and VI children. Meaningful research is being done, technology is advancing, opportunities abound.

I’m just including the following web links, to give you an idea of some of the topics discussed and some of the organisations represented at the conference, should you have a blind or VI child in your life:
http://saaled.org.za/
http://www.eyesite.co.za/magazine/august2004/spotlight3AUG2004a.asp?mainbutton=spotlight&navbutton=spotlight3
http://www.sensorysolutions.co.za/AboutUs.htm
http://www.perkins.org/international/brailler/
http://mountbattenbrailler.com/
http://www.blindsa.org.za/cgi-bin/giga.cgi?c=1137
http://www.sancb.org.za/

I took Cam to Jacobus (Dr Pauw) on Friday afternoon for a quick check up. His left eye has a fair amount of bruising from the op on 22 April, but besides that it’s all good, thankfully.

The photo is of Paul Prozesky and Murray working on their engineering of a visual therapy tool to alleviate Cam’s nystagmus. (http://www.healthscout.com/ency/68/516/main.html) Murray could really use your prayers over the next month. In June he flies to England to write a set of Optometry exams and he is studying just about 24/7…

‘You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! ...for those who are righteous, the way is not steep and rough. You are a God who does what is right, and you smooth out the path ahead of them. Lord, we show our trust in you by obeying your laws; our heart’s desire is to glorify your name.’ Isaiah 26:3, 7-8

Grace, gadgets and games

On Sunday we had the privilege of meeting Stafie and Petru Pelser (Therina Mol’s parents, for those of you who know the family). Arnold and Joy invited us for lunch because Stafie, who is blind, was so eager to meet us and chat to us about Cameron, and life in abundance.

He brought along a suitcase full of just some of the things that he uses to make life easy and ‘normal’ for him. He chatted to us about the path of acceptance that he walked, he gave us some advice about how to raise Cam, and he read to us from Romans 8:

‘Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? As it is written: "For your sake we face death all day long; we are considered as sheep to be slaughtered." No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.’

It was such a blessing for us to spend time with Stafie, and much of what he shared with us confirmed decisions that we have already made about the direction of our parenting. One of the things that amazed me was how well he could read Cam. He has incredible discernment and sensitivity and he had Cam figured out within seconds…! And Cam had loads of fun playing with Duane and Therina’s three girls, Jody, Keira and Liza. :)

The other photos are of Cam, Ben and Tyla at the Stokkers’ housewarming on Saturday, and of Cam playing with Lola in his room this morning before school. :)

Looking for a good book when life is lousy?

Cam had tonsillitis this week, so unfortunately we didn’t get to take him on his first camping trip as planned. I know that canceling a couple days in the Pilanesberg is no big deal, but we were really disappointed because we’d been looking forward to it for ages. However, it reminded me again to rest in God’s knowledge of what is, in fact, best. Cam is all better now; Murray took the week’s leave anyway to study for the optom exams he’s writing in the UK next month; and it was great to have a quiet, unexpected week all together at home. (Some pics to follow…)

I thought it might be cool to share with you some of the books that we’ve read over this past year. Some were new to us; some were books we’d read before but needed to revisit, for peace and perspective. Through so many pages of so many books, God has introduced us to amazing people who have counseled, encouraged, comforted and enlightened.

To mention but a few...:

Trusting God (Jerry Bridges)
Is God really in control? (Jerry Bridges)
Children with Visual Impairments – a parents’ guide (Edited by M. Cay Holbrook)
Walking with God (John Eldredge)
Don’t waste your life (John Piper) (I think everyone on the planet should read this book at least once a year…)
Calm my anxious heart (Linda Dillow)
When Heaven is silent (Ronald Dunn)
When God doesn’t make sense (James Dobson)

And I think there were others… And then there was Louis Giglio’s DVD series on Hope – amazing!

‘So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while.’ – 1 Peter 1:6