wonder baby

I know there’s nothing anyone can say. We would value your continued prayers and love as we wrestle with this and try to come to terms with it all.

Cool site to check out, that will give you wisdom as you come alongside us to love our precious baby Cameron: http://www.wonderbaby.org/

results of the EUA

Dear all

Thank you very much for all your prayers, and for the many, many SMS’s, etc that we’ve received today.

The news is not good.

Cameron’s eyes are very small – too small for them to operate now. Dr Pauw says we will have to wait until Cam is at least 6 months old (October) before they operate. The cataracts are very dense – so much so that they couldn’t see the retinas at all so still don’t know the extent of the damage to the eyes. His right eye is smaller, weaker, the cataract is worse, etc – there seems to be an indication that it hasn’t developed properly. The pressure in his eyes is already a bit too high, an indication that glaucoma will almost certainly develop, if it hasn’t already started. This all means that Cam will have very serious visual impairment and a high possibility of blindness (i.e. he will not be able to see ‘the big E’… which means no driving, etc ).

Please pray for us. We are so utterly shattered, all over again… And we don’t really hold out much hope, even though we know in our heads that God can still do a miracle. We are trying to believe that He knew about this from before eternity past, from when we were little, that this is no mistake, that He put us together in marriage and that He created Cam and said that it was good, that He has a plan for Cam’s life, etc, etc, etc… We are also trying to have the attitude of Daniel’s three friends:
‘If we are thrown into the blazing furnace, the God whom we serve is able to save us. He will rescue us from your power, Your Majesty. But even if he doesn’t, we want to make it clear to you, Your Majesty, that we will never serve your gods or worship the gold statue you have set up.’ Daniel 3:17-18
i.e. – we know God can heal Cameron, BUT EVEN IF HE DOESN’T… we’ll still worship Him.
And we want to claim this verse:
‘Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord! I will be joyful in the God of my salvation! The Sovereign Lord is my strength! He makes me as surefooted as the deer, able to tread upon the heights.’ Habakkuk 3:17-19

But we’re struggling.

Thanks.

Murray & Dee

a different kind of Fabuland...

It’s Saturday night – four more sleeps ‘til the EUA. Speaking of sleep, we are so grateful that Cam is sleeping through. Please pray that he sleeps especially deeply and soundly the night before the EUA, since I can’t feed him for a good eight hours before they put him under anaesthetic…

We’ve had an emotional couple of days, at times experiencing feelings of real hope and expectation, and then fear and sadness and anger. At times I get so overwhelmed by the enormity of what may well lie ahead for us and for Cameron. Please continue to stand in the gap for us.

A couple of people have sent me this article, and it aptly and beautifully expresses something of the magnitude of what we’re feeling (and it reminds me of the point that Sheryl and I were trying to make in our book ‘Flight to Fabuland’ – which is now available at Exclusive Books, we are chuffed to say!):

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special , the very lovely things… about Holland.

©1987 by Emily Perl Kingsley.

7 sleeps 'til EUA

Murray’s first Father’s Day – a walk around campus with Cam and Lola.

We continue to be so blessed by the love and prayers of family and friends. We know we are being carried.

‘So if you are suffering in a manner that pleases God, keep on doing what is right, and trust your lives to God who created you, for he will never fail you.’
1 Peter 4:19

Therapy et al...

We’re getting used to having twins – Lola just about understands the difference between carpets and grass, which is great! She is incredibly gentle and friendly and sweet. Cam smiles when she licks his hands, and even when she sits on him… We are trying to discourage Lola from doing the latter.

A couple of weeks ago my mom-in-law and I visited the Baby Therapy Centre in Lynnwood and chatted to an OT there. She was hugely helpful and encouraging. She gave us a lot of perspective on Cameron’s situation, explaining that of the seven senses (sight, hearing, touch, taste, smell, movement in space and ‘propriaception’ – joint sense) Cam has a hindrance in just one of those areas. We’ve been doing some therapy with him, based on the ideas she gave us, to stimulate his other 6 senses and so prepare him for the vision he will, Lord willing, develop once they have removed the cataracts. We’re already noticing how much his auditory and tactile senses are developing.

The OT also gave us tips, like how to move him around in space so that he gets used to the sensation without fear, since his eyes are not telling him where he is. And like not shaking a rattle in his face without any warning. He’ll get a fright, he won’t enjoy it and he won’t learn anything. We need to prepare him with our voices, or with touch, for anything that a sighted child would be prepared for through vision. We also always start talking at the door of a room he’s in so that he hears us coming and doesn’t get a fright when we suddenly say, ‘Hello my boy!’ right in his face. We are learning piles and heaps.

Last night Murray met with an optometrist from New Zealand who is specializing in fitting contact lenses on babies with Cam’s condition. He was really encouraged. My mom and I went to visit a blind family that the Baby Therapy Centre recommended we meet. This was also a really valuable experience and they very graciously gave us perspective, and hope.

We still await the results of the blood and urine tests, and the EUA on 25 June seems like eons away… Fourteen more sleeps.

Thanks again for prayers, thoughts, kind words…

Much love, d

Lola

Yesterday (5 June 2008) Cameron’s Granny and Grandpa gave him a golden retriever puppy! We’ve named her Lola. Please pray with us that she will become a friend, protector and guide for Cameron, and that she will love him and make him laugh a lot. Please also pray that she doesn’t destroy all our furniture…

‘Lola’ means ‘crowned with compassion and grace’ (from Latin). According to our name book, the spiritual connotation of the name is ‘perceptive insight’. So a pretty good name, we thought!

Yesterday I also had to take Cam for blood and urine tests, which was quite an ordeal (mostly for me)… Our prayer is that the results will not reveal any genetic or metabolic abnormalities, which should confirm that the reason for the cataracts is idiopathic (i.e. random).

THANK YOU for continued prayer, love and support for us as a family!

Latest...

Hi all

Yesterday (3 June) we saw Dr Jacobus Pauw, the opthalmologist who will be performing the surgery. Great guy; really gracious. He is going to do an examination under anaesthetic of Cam's eyes (with Murray in on the procedure to do the refraction) on 25 June, and then they will make a decision about when to do the surgery - probably at 4-6 months.

Today I went back to the paediatrician - Cam needs a whole battery of blood and urine tests, to try to ascertain why the cateracts formed (genetics, etc). He also recommended that we all 3 see a specialist geneticist, to rule out any abnormalities i.t.o. us having more babies in the future...

So we keep on taking the next right step, one decision at a time, praying for wisdom and discernment at every turn.

In the mean time, Cam is smiling plenty and is cuter than ever!!! :)

Will keep you posted!

Love d

Cameron

Dear family and friends

When Cameron Benjamin Reyburn made his way into the world on 7 April 2008 our lives changed in the most beautiful, breathtaking way. What followed were six weeks of being blissfully awestruck by absolutely everything about his tiny person.

And then, two weeks ago, we discovered that Cameron has bilateral congenital cataracts, which means that he isn’t seeing more than a cloudy blur of light or dark. He is still the same impossibly adorable baby boy who smells delicious at bedtime and is just learning to laugh. And yet now he faces a future of countless operations, possible – even probable – glaucoma and blindness, a life robbed of colour and beauty and opportunity and ease. So much of what we have pictured of our lives with him seems now to mock us cruelly. Will he go to a mainstream school? Will he be able to drive? Will he be teased by nasty children? Will he read music, or see a sunset on top of the Drakensberg, or backpack his way through the cathedrals of Europe?

Murray being an Optometrist with a degree in Genetics means that we have faced a mental Everest of frightening textbook case studies and patient histories. We have spoken to specialists in South Africa and abroad, read article after article, rehashed the options and possibilities of Cam’s situation over and over. The spectrum of our emotions over these past days has ranged from paralyzing terror that makes my skin ache, to confident hope, to anger, to numb calmness, to utter despair, to disappointment, to the quiet sadness of grief. And we have wept… and wept.

The low down is the following: if they operate now to remove the cataracts, Cameron’s sight could develop pretty well, but he will almost certainly develop glaucoma, which is not always treatable, and if developed in such a young patient results in blindness within a couple of years. If they wait a few months before operating, the risk of his developing glaucoma is lessened, but his vision will be the poorer for the delay. So we are stuck between a rock and a hard place. Do we operate early, give him the best chance at vision and hope that he doesn’t go blind after a while? Or do we wait, and at least give him some, if limited, vision, hopefully for the rest of his life?

I know it was no accident that in those sacred moments of Cam’s delivery, the hymn It is well with my soul was playing softly in the calm, sterile caesarian theatre of the Pretoria East Hospital. I will never forget Murray’s ecstasy, Cameron’s first cry as they lifted him from me, and the ancient words:

O Lord, haste the day when my faith shall be sight
The clouds be rolled back as a scroll…

At the time I didn’t know of the clouds that Cameron would face, and how desperately I would long for the physical clouds of congenital cataracts to be rolled away from these precious tiny eyes I have come to love far more than I can say. I know that God will roll away the clouds to reveal the blazing light of His glory. I don’t know yet how He will do that. Perhaps by miraculously healing Cameron physically; or perhaps by giving him spiritual eyesight to accomplish His Kingdom purposes.

There are, however, a few things I know for sure.

I know that with our God, the best is yet to be.

I know that I don’t have to say, ‘Oh God, look at this great mountain!’, but rather, I can say, ‘Mountain, look at our great God!’ He has never let us down; He has never not come through for us; He has never disappointed. Even when the end result has been different from what I wanted or envisaged, in hindsight His way has always been higher and better than my way. And I know that in this situation His character – perfect in love, power and wisdom – will be no different.

I know that God knit Cameron together in my womb, fearfully and wonderfully. I know that every day, every moment, of his life was laid out before one of them came to pass (Psalm 139).

I know that we will do everything in our power to make sure that Cameron leads a brimful life of wonder, opportunity and zest. Someone wisely said that ‘normal’ is just a cycle on the washing machine… so I am determined never to let it be said that Cam will not lead a ‘normal’ life. He is a whole, unique, potential-laden little boy with his own character, temperament and personality just waiting to be unleashed on the world.

Since his conception I have been praying for Cameron, that he will be a man of God, set apart for His purposes. I’ve prayed that he will live out loud every bit of the potential that God has placed within him, that he will have a mighty heart, and that he will be wise. And so I know that this scary, sad situation will be used of God for Cameron’s good and for His glory.

We have been overwhelmed and humbled by how this news has affected people – our closest family and friends, and then also people who have never even met us or Cameron. We have been deeply touched to hear of churches, cell groups, prayer chains on literally every continent around the globe who are praying for us. We have been so encouraged by the visits, phone calls, SMS’s and emails, the meals brought, the Scriptures given, the words of life and hope and love and favour bestowed upon us. We are particularly grateful to our families, and to our church family of Waterkloof Baptist, for their rock solid support for us at this time.

I thought to just include the following verses, which have meant a lot to me over the past two weeks (maybe so you can remind me of these things when the stress and fear set in again, as I know they inevitably will?):

Psalm 77:19
‘Your road led through the sea, your pathway through the mighty waters – a pathway no one knew was there!’

Is 40:11
‘He will feed the flock like a shepherd. He will carry the lambs in his arms, holding them close to his heart. He will gently lead the mother sheep with their young.’

Job 42:2
‘I know that Thou canst do all things, and that no purpose of Thine can be thwarted.’

Psalm 84:11
‘For the Lord God is a sun and shield; the Lord gives grace and glory; no good thing does He withhold from those who walk uprightly.’

Psalm 138:8
‘The Lord will work out His plans for my life – for Your faithful love, O Lord, endures forever. Don’t abandon me, for You made me.’

Ephesians 3:20
‘Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.’

And then the words of yet another brilliant hymn:

Be still, my soul! The Lord is on thy side; bear patiently the cross of grief or pain;
Leave to thy God to order and provide; in every change He faithful will remain.
Be still, my soul! Thy best, thy heavenly Friend thro’ thorny ways leads to a joyful end.

Be still, my soul! Thy God doth undertake to guide the future as He has the past.
Thy hope, thy confidence let nothing shake; all now mysterious shall be bright at last.
Be still, my soul! The waves and winds still know His voice who ruled them while He dwelt below.

Be still, my soul! The hour is hastening on when we shall be forever with the Lord,
When disappointment, grief and fear are gone, sorrow forgot, love’s purest joy restored.
Be still, my soul! When change and tears are past, all safe and blessed we shall meet at last.

We meet with another ophthalmologist this week – probably the one who will do the surgery. Please continue to pray for wisdom for all concerned. Thanks so much.

Love Dalene

Hi all!

We will keep u posted on Cam's eyes here!