My song

Matt has been unwell for about a week now. High temperatures, vomiting and diarrhoea. It looked like he was getting better on Sunday, but on Monday afternoon the fever struck with a vengeance. We started him on antibiotics. Tuesday we saw no improvement – in fact most of the day was spent keeping his temperature down as it would climb high the minute the meds wore off. Today he was diagnosed with tonsillitis. Now we know what we are dealing with and have adjusted his antibiotics appropriately. I am hoping the high temperatures will pass soon.

It has been tough for Matt – he has really been feeling unwell. He has been so droopy and clinging. I can’t explain to him what is happening to him, so on one level I have felt frustrated. But on the other hand, since I cannot rely on words for explaining, I have discovered a very precious way of communicating comfort and reassurance to him – through song. My song. Now I am not a great singer by any stretch of the imagination, yet my simple tunes, though sung in a slightly off key manner, seem to really touch him. On Monday night he woke up with such a high temp that he was shivering so violently that he could hardly move his limbs. Whilst we were waiting for his temperature to come down, I cuddled him on my lap with his head against my chest. I could tell that he was tense and confused about what was happening to him. I started singing and immediately he calmed him and snuggled in closer. He knew that he was safe. I know he felt my love and care for him through my song. Music has many values, but over the past few days I have seen its visible effects on Matt’s body. I have been struck by what an amazing gift music is to us as humans.

A Matt look-alike

Last week Matt and I met a tiny little baby called Samuel. He has a full head of hair – dark black. He has a big red birth mark on his forehead. He has the cutest face. He has thumbs that are elegantly angled outward. He looks like a new born Matt, only smaller. He looks like he could be Matt’s younger brother. In some ways he is.

Yes I finally met another child with Rubinstein Taybi Syndrome. This was a day I have been longing for and dreaming about for a long while.

Last week Thursday Samuel came to visit us with his mom and dad. I had been in telephonic contact with them for a few weeks and finally things worked out for us to meet. I know that Sam’s parents are still trying to find their way in "Holland" and so they were probably not so excited about meeting me as I was to meet them. But for me it was so precious – knowing that we are not alone anymore. Being in physical contact with someone on the same journey – words can’t describe that feeling of camaraderie. I know our friendship will grow from here.

Pray for little Sam, who was born prematurely, and is facing a number of health challenges. I was so overwhelmed and so overjoyed at meeting them that I forgot to take photos. Hopefully we will be able to visit them soon and I can get some pics – so watch this space.

I will still hope

This last week has been fairly emotional for me. Nothing specific has happened – no big crisis or anything. But I have been thinking a lot about Matt’s communication. Last week I was looking forward to attending the second level training in Makaton Signing; yet at the same time I was also quite angry about having to go.

I really am thrilled to be finding a way of opening the door of communication to Matt. I love it every time he makes a sign. I love it – with a deep and wild joy!! I love the connection. But another part of me is not ready to accept the fact that Matt might not be verbal. I am such a verbal person. My life makes sense when I talk. My profession is about talking and listening. I build friendship through words – giving them and receiving them. Some people connect with others through touch, or doing something together – I connect through talking. It seems so crazy to me that I should have a child who might not talk.

My husband was wonderfully supportive, allowing me to vent and reminding me about how well Matt is doing. The truth of his words became clear for me on Saturday during the training session. I met a mother of a 5 year old who couldn’t speak; although he understands a lot. He hasn’t learnt to sign or communicate through gestures. He doesn’t even point – but if he wants something he will push his mom towards the thing that he wants. He is quite strong and as he is getting older it is getting harder for his mom to cope. This mother’s strength in such trying circumstances really touched my heart. And it also made me realise how much I truly have to be thankful for. Gratitude really does bring me back to earth again, and plants my feet firmly on the ground.

Yet, although I have accepted many things about Matt’s syndrome, I am still not ready to accept the thought that he might not speak. I still pray that he will. But I won’t let it dominate my life, and I won’t let it rob me from fully enjoying every communication moment with him.

But I will still hope…

Here Matt is signing KISS -he is facing away from Lloyd;

but making the sign in the mirror so Lloyd can see.

Then he turns and does exactly what he signed.

A precious kiss for his dad.

Hair

Last week I cut Matt's hair. It didn't turn out that well - clearly I need some lessons in hairdressing. That night we were playing around with some of my hats, maybe they will come into handy...

The last two photos are of Matt in his own hat - just in case you were wondering!