One year on...remembering Theo

It seems like a cliche, but it really doesn't feel like a whole year has passed! On this day last year, we welcomed and said goodbye to our son Theodore. Over the last year, we've been through times of happiness and times of great sorrow.

Theo was only with us for a short while. Some people spend their whole life looking for their purpose in life...searching for the one thing that will make an impact and cause their name to be remembered always. Theo managed to achieve this in just 4 and a half hours. That was all the time God required of him here before his work was done. Although Clare and I don't fully understand why his time was so short, we know God's will was done because we see it in the effect Theo's life has had on other people as well as ourselves.



We are certainly changed by all this. In some ways we are older, wearier and more battle-worn. But in others we are stronger, firmer in our faith and more trusting in God. The good surely out-weighs the bad.

As Clare and I look back over the past, we also look to the future. We don't know what's around the next corner for us but we know that we will make it through because we trust in a God who promises to be with us always. He hasn't always made it easy for us over the last year but he has always been there for us. We know we can rely on God because he has a track-record of not letting us down.

Finally, a very big and heart-felt thank you to everyone who has supported us over the last year. In many ways, big and small, you have made our journey easier and for that we are extremely grateful.

To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.

Jude 1:24-25

Taking the plunge!

I've been meaning to post this for over a week now but have been so busy that I have only just got round to it! We received an email from Clare's friend Di who made the decision recently to get baptised. Baptism is a public declaration that you believe in God and want to follow him. It also involves getting quite wet! Christians get baptised to follow the example of Jesus who was baptised by John (... the Baptist, funnily enough!). This is part of the email that Di sent us, explaining why she made the decision.

Although I was Christened as a baby and Confirmed as a teenager in the Anglican church, and have been a practising Christian at Martlesham Christian Fellowship for 23 years, God has been nudging me for quite a while now to affirm my faith!

After many discussions, and much prayer, I was baptised by full immersion (adult baptism) this weekend, in the sea at Sizewell (church weekend at the Christian Conference centre there), to affirm my love for God (photos attached). It was amazing! God is good!

I just thought you would like to know, as your testimony through the blog, and your example of ongoing love for God through Theo's life and death has been one of many influencing factors in my decision.

This was very exciting news for us! Di has been a great support to us over the last few months (I still remember the lovely food parcel she had delivered as a surprise for us when we came home from work one day....mmm!). It is even more touching that Theo had his own small part to play in her decision. Clare and I are both very happy for her!

One step closer

Finally, I have some more news for you!

I had a phone call from our geneticist yesterday who told me that he had got the results of my x-rays back from Great Ormond Street. The good news is that they have said that they can't find any link between me and Theo! You may remember that when we first went to see the geneticist, he was concerned that I exhibited some of the same issues as Theo (shortness, wonky legs, arthritis, cloth ear, etc). He had thought there might be the possibility that I had mosaicism. If I did, it could potentially increase the risk that we could have another child with the same condition.

It seems that this is not the case and so hopefully the chances of recurrence are greatly reduced. We have yet to see him officially to get the full details and we still have to wait for the results of Theo's genetic tests to come back. Nevertheless, this is a very positive sign and gives us hope that there is light at the end of the tunnel.

The geneticist is still chasing Theo's genetic results to see if they're finished so as soon as we know anything, I'll let you all know.

Thanks to you all for your continued prayer and support!

Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD.
Lamentations 3 22-26

Waiting

Today is the 5 month anniversary of Theo's birth and death. It has passed largely without incident or upset which I take as a sign that, although life is still hard at times, we are both slowly coming to terms with things. Clare is cooking me a nice dinner of toad-in-the-hole as we speak (despite being a bit under the weather!).

We are still waiting for the results of Theo's genetic tests and my x-rays. The waiting seems to be harder than the grief these days and it's so very hard to be patient when all we want to do is start our family.

We had a church weekend just over a week ago and, whilst looking through the book stall, a book jumped out at Clare because of its title..."Wait". The book contains a poem that's apparently done the email circular rounds in the past. It talks of how God is capable of giving us everything we want but often tells us to wait because it is by doing this that we learn more about him and grow in Christ. The words of the poem are truly inspired!

Wait by Russell Kelfer Desperately, helplessly, longingly, I cried; Quietly, patiently, lovingly, God replied. I pled and I wept for a clue to my fate... and the Master so gently said,"Wait." "Wait? you say wait?" my indignant reply. "Lord, I need answers, I need to know why!" Is your hand shortened? Or have you not heard? By faith I have asked, and I'm claiming your Word.
My future and all to which I relate hangs in the balance and you tell me to Wait?" I'm needing a 'yes', a go-ahead sign. Or even a 'no,' to which I'll resign. You promised, dear Lord, that if we believe, We need but to ask, and we shall receive. Lord, I've been asking, and this is my cry: I'm weary of asking! I need a reply.
Then quietly, softly, I learned of my fate as my Master replied again, "Wait." So I slumped in my chair, defeated and taut, and grumbled to God, "So, I'm waiting...for what?" He seemed then to kneel, and His eyes met with mine... and He tenderly said, "I could give you a sign. I could shake the heavens and darken the sun. I could raise the dead and cause mountains to run.
I could give all you seek and pleased you would be. You'd have what you want, but you wouldn't know Me. You'd not know the depth of My love for each saint. You'd not know the power that I give to the faint. You'd not learn to see through clouds of despair; you'd not learn to trust just by knowing I'm there. You'd not know the joy of resting in Me when darkness and silence are all you can see.
You'd never experience the fullness of love when the peace of My spirit descends like a dove. You would know that I give, and I save, for a start, But you'd not know the depth of the beat of My heart. The glow of My comfort late into the night, the faith that I give when you walk without sight. The depth that's beyond getting just what you ask From an infinite God who makes what you have last.
You'd never know should your pain quickly flee, what it means that My grace is sufficient for thee. Yes, your dearest dreams overnight would come true, but oh, the loss if you missed what I'm doing in you. So, be silent, my child, and in time you will see that the greatest of gifts is to truly know me. And though oft My answers seem terribly late, My most precious answer of all is still "WAIT".

We know that the sentiments expressed in this poem are true of the God we put our trust in. Although loss and waiting patiently are hard to bear, we believe God uses these things to develop our faith and character so that we can become more like Him.

Like Father Like Son

Yesterday, we had our first genetics appointment. Although we've had a lot of input from various doctors regarding the genetic side of Theo's condition, this was the first time that we had talked to someone who was fully qualified to comment on the genetics.

We found out that Theo's genetic samples have yet to be submitted for testing as they were waiting for the go-ahead from us to proceed. Now that they have that, the samples are going to be sent to a laboratory which specialises in skeletal dysplasias. The geneticist told us that they might be able to get the work done at Cambridge, but failing that it would need to be sent abroad. The time scale is 2 months in the best case, but could be anything up to 6 months.

The results of Theo's genetic tests should hopefully reveal that he has the gene that causes SEDC/Kniest and so confirm the original diagnosis. If this is the case, it will mean that they have a genetic test which can be conducted at about 12 weeks into pregnancy if that is what we decide to do. In the absence of any such test, early growth scans should be able to pick up indications of a problem.

So far, so good... but now we get to the chance of recurrence. As a back drop to this, the problems associated with Collagen defects (such as SEDC/Kniest) include eyesight, hearing, bone growth, early on-set of arthritis, spine and joint issues, amongst others.

Now as a under-average height, arthritic, half-deaf, flat-footed, talipes-affected, loose-hip jointed kind of guy... this set off a few alarm bells! Although the geneticists we saw whilst Clare was pregnant didn't seem that concerned with my various ailments, it turns out they might have more of an impact than originally thought now that the diagnosis has changed from Achondroplasia to Kniest or SEDC.

It is possible that I have Mosaicism with regards to the collagen defect which effected Theo. As I understand it (and here comes the science part), this would mean that a certain subset of my cells would be affected by the defect and, if this were the case, would account for my one or two problems. If my sperm were effected, it would explain how Theo ended up as he did.

In terms of predicting the likelihood of it happening again, it gets a little tricky. As I understand it (and I probably don't!), if I suffered from this problem, and all my sperm were defect, then that would leave us with a 50% chance of recurrence. If only 1% of my sperm were affected, that would take the percentage down to a half.

Unfortunately, it seems unlikely that they will be able to give me a percentage sperm defect amount and so we may not be able to find the exact chance of it happening again.

But, before we get too ahead of ourselves with the doom and gloom, they haven't said that I have this problem yet. It's just an avenue they think is worth exploring. My issues could be all coincidence. After all, I lost my hearing in one ear when I was 3 so that probably isn't genetic... the arthritis could just be a result of my bad legs. The are going to take x-rays of my long bones, spine, etc and send them to Great Ormond Street for examination. That will give them more of an indication of whether they think I'm affected.

So that's the score. I haven't covered everything off because it gets quite detailed and I don't want to bore people with technicalities! If you want to know more information, drop me a mail and I'll fill you in.

How does this make us feel? A bit despondent, if I'm honest because we were quite hoping that it would just be "one of those things" and we wouldn't have to worry about it again. Also, we're going to have to wait even longer for answers that may be difficult to take and require us to make hard choices.

Nevertheless, we know that God has a plan and that this plan is good. We know that He will help us on this new path and give us the strength to get through it because He's done it before. So, we are in the process of picking ourselves up and getting on with it. Please pray for us, particularly Clare as she's taking this quite hard and had really hoped we could move forward with our family in the near future which seems unlikely now.

I will keep you posted with more news as it happens. Thanks for reading!

Did you hear it too?

Did you hear it too?

They say that angels don’t appear nowadays.

Yet that’s what it was like, a mighty choir, joyful, glorious.

A strange song, ebbing and flowing like the eternal sea,

Far away beyond the stars.

Did you hear it too?

Perhaps I just imagined it. Wishful thinking. Was it all in my mind?

And yet the feeling was real. The love was real, overwhelming,

Beyond all human sense or logic, bright as the sun,

Dazzling my eyes.

Did you hear it too?

Did you hear it as your soul flew to the arms of your Saviour?

Did you know that you would leave us grieving?

Did you know how hard it would be?

Did you know that we would never forget?

Did you hear it too?

That majestic choir would have engulfed all other sounds.

All you would have heard was the music of the love of God.

One day we shall hear it too.

One day we shall all sing together.

by Hugh Dungey