Asa’s Hearing Loss Diagnosis

Ok… One of my biggest fears since Asa was born was the very real possibility of a hearing impairment. Today Asa has been diagnosed with moderate conductive hearing loss in both ears… This is due to ‘glue ear’ – a build up of fluid in his inner ear. The audiologist, Jacqui, described it as a ‘temporary conductive hearing loss’…but she couldn’t rule out a mild permanent ‘sensori-neural’ loss in one ear – the result was borderline.

Asa’s last hearing test on 28th August was emotional. Amy came with me and I am thankful for her support and positivity – she doesn’t let me get away with much moping around! Back then, I was told he had a hearing loss in one ear – I forget which one. Today’s hearing test was to check his other ear and if this ear was fine, no intervention would be necessary… The ABR (automatic brain response) hearing test today shows that he has a hearing loss in both his ears, as stated above.

The audiologist, Jacqui, said that Asa is currently unable to clearly hear all of the necessary sounds needed for speech, particularly the higher pitched, softer sounds such as ‘s’, ‘f’, ‘sh’, ‘th’. This means that early intervention is necessary to help his speech development. The options we’ll be looking at are either a softband bone conductor hearing aid, or the more common hearing aids (if his ear canals are big enough). Thankfully decisions aren’t needed today – I’m told we’ll meet with Dr Roberts sometime to discuss these options in details.

I’m writing all of this from a purely factual point of view, because if I stop long enough to think about it, to really think about it, my heart feels like it’s quite possibly breaking in to a thousand pieces and those constant flowing tears will be back to soak the laptop on which I am typing. I know people will be thinking that ‘it’s not the end of world’ – and they would be quite right. However, since Asa was born, it has been one of the things I have been most worried about. We knew he faced around a 40% chance of hearing and/or vision problems – that’s another one of the statistics given to children with DS.

When he failed the newborn hearing test before he came from hospital, he failed in one ear. That was upsetting enough, but there was hope. Hope that his other ear would compensate and that all would be well. Out of all those who fail this test in one or both ears, 9 out of 10 will have no hearing loss. 1 in 10 will have a hearing loss to some degree. This is the category we fall in to. The 1 in 10.

When I am feeling particularly anxious, nervous or scared, I get what I call ‘sicky stomach syndrome’, where these negative, anxious thoughts dwell on my mind, causing very real symptoms – feeling sick, ‘butterflies’ in my stomach, a flare up of eczema and sometimes headaches. Today, I cannot shift the ‘sicky stomach syndrome’. I had it while I drove in to the hospital, alone. I had it while searching for a parking space. I had it while walking in to hospital. It was still there when Asa was undergoing the test. It was there while waiting for the computer to plot all the results on a graph. It was there while I silently cried and prayed to God. I had it while the lovely Jacqui was telling me the results. It was there while Asa had the tympanometry test to see if the hearing loss was conductive (temporary) or sensori-neural (permanent). It was there as Jacqui wrote out the summary and informed me of the next steps. It was still there as I drove home, willing things to be different. It’s there even now, hours later, when the children are in bed and it’s just me and the laptop. The ‘sicky stomach syndrome’ does usually fade. I know it will return. I know people will think I am being dramatic, but most people probably won’t have been in our shoes. I’m vulnerable and hurting and sharing my honest thoughts.

Matt Redman’s CD was playing in the car on the way home, and the song ‘Never Once’ really resonated with me. Yet again, the tears came. I’ve included the lyrics at the end of this post, for you to read if you’d like… Powerful yet simple.

I started off very factual and numb writing today’s blog entry. Now, the tears don’t seem able to stop. It’s a reminder that God, for reasons only He knows, doesn’t always answer prayers in the way we want. I’m still trusting Him for the future. What else can I do?

Proverbs 3 v 5: “Trust in the LORD with all your heart and lean not on your own understanding”

***

Never Once
(Matt Redman, 2011)

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Our Little Light

Today has been an emotional day. The hospital rang to say that Asa’s hearing test had been done this afternoon. He passed in one ear but not in his other. I can’t remember which way round it is. This doesn’t necessarily mean a permanent hearing loss in the ear – it could be fluid in the ear, a faulty test, or some other problem – but I’m afraid terrified he may be deaf in one ear. I know that this is not the end of the world, yet I have been in floods of tears. We have been told that around 50% of those with DS have vision and/or hearing problems, and 50% don’t. We’ve been hoping and praying that he fell in to the latter group. I had my mum and cousin around for lunch earlier when I had the phone call, so it was hard to remain ‘normal’ while wanting to run and hide!

For some reason, that phone call has really upset me. All day it has been on my mind and tears have pricked me eyes throughout the day. The thought of our precious son suffering any kind of medical problem is almost too much to bear. I don’t want him to have any hearing loss. I don’t want him to have any vision problems. I don’t want there to be anything wrong with him. No-one would wish any difficulties on their children. It’s triggered off fears of a more difficult life than imagined when I fell pregnant so easily this time around. Obviously life with two children will be harder, but I get so fearful of how much more difficult life might be, now that we know Asa has DS. Part of it is the ‘unknown’ that is so scary. I wish with all my heart I wasn’t so fearful and negative.

I was watching a bit of ‘Glee’ on TV today while Emelia was napping. Will, the choir leader, goes regularly to visit the children’s cancer ward in the local hospital. Each time he goes in he takes his ukulele and sings to, and with, the children. Will leads them in a beautiful rendition of the following song:

“This little light of mine, I’m gonna let it shine,
This little light of mine, I’m gonna let it shine,
This little light of mine, I’m gonna let it shine,
Let it shine, let it shine, let it shine!

Hide it under a bushel – NO! I’m gonna let it shine.
Hide it under a bushel – NO! I’m gonna let it shine.
Hide it under a bushel – NO! I’m gonna let it shine.
Let it shine, let it shine, let it shine!”

I started crying again at this point. Seeing all the beautiful characters singing along was really moving. I realised that Asa is like our little light – we’ve got to let him shine. Let him somehow shine out the love of Jesus for the world to see, for God’s glory. I will not ‘hide’ Asa under a ‘bushel’. God has a purpose for our precious son. He doesn’t make mistakes. He will one day fulfil His purpose for Asa for all to see.

I tweeted this today:
“This little light of mine, I’m going to let it shine!” – Asa is our little light to shine in the world to reflect Christ’s love & goodness.

 

Yes there will be challenges ahead, but this little boy (in addition to our 2 and a half year old) will bring much joy – not just to our lives but to the lives of others. He may lead a simpler life than his friends but we pray that through him we can bring people closer to Jesus somehow – through the many doctors / hospital appointments, through celebrating his differences, through encouraging him to love Jesus with all his heart, through being a little light in the world. Both our children are little lights of ours and we do pray they will shine out the love of Jesus from their hearts, that all may see Him in them and want to know Him more…

Asa needs love, protection,and encouragement to reach his full beautiful potential, and his little flame will burn ever more brightly as he gets older and learns different things, especially just how much he is loved, not just by us, our wider family and church – but by the Creator Himself. xx

(NB. All babies now have this newborn screening hearing test shortly before being discharged from hospital, so while it’s been an emotional day because of his potential hearing impairment, it’s also positive because it means he may be home soon! Although not trying to get our hopes up too much).