Shattered Dreams?

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Unable to hold our son that night... :-(

Three months on, and I still see these images in my mind… How bittersweet those first few days were.

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I love the devotionals and blogs written by ‘Girlfriends in God’. These three women write so beautifully for Christian women about faith, life and love, and everything in between. It’s for parents, for busy professionals, for young women and older – for women everywhere.

I don’t read these devotionals every day. Today I read the post from 3rd October. I found this post so moving, so inspiring, so helpful. It’s about shattered dreams that we may face. This may take various forms, such as a divorce, the heartache of infertility, the death of a child, or losing one’s job, and so on.

Here is a snippet from the devotional:

“Every day I receive emails from women who have had their dreams shattered. A husband has an affair, becomes addicted to pornography, abuses the children, or deserts the family. A child gets caught with drugs, becomes pregnant, or dies in a car accident. Parents divorce, friends betray, careers come to an abrupt halt. The list is endless. So what do we do when our dreams are seemingly destroyed? The answer to that will shape the rest of our lives.

 

Does that mean we give up our dreams? I can promise you this, whatever dreams you have for your life, God’s dreams are greater. The power of the Holy Spirit the disciples received after Jesus’ resurrection, and the impact they made on the world thereafter, was beyond their wildest dreams. That’s what God does with a heart that is wholly yielded to Him. That’s what He does when we give our shattered dreams to Him. I have learned to stop saying, “Why me?” but instead start saying “What now?” ”

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When Asa was first born, it was incredible – now we had a baby boy and a little girl! This is the dream right? The dreams we had… Daddy would play football with his boy, teaching him to kick the ball, to ride a bike, to love God. Mummy would choose some adorable little outfits, pray with and for him, wash football kits. Emelia would tease her baby brother, try to dress him in girly clothes, force him to wear makeup or play hairdressers… Perhaps!

Later that night, in the Neonatal Unit, the nurse told us that our perfect little boy had some features of Down’s Syndrome and that the doctor would meet with us tomorrow to discuss it.

*BOOM* – shattered dreams. Would Asa ever get to play football with his dad? Would he be sporty at all? Would he…? Would he…? Would he…? The questions in my mind kept coming. That was possibly one of the worst nights of my life (other than the second night in hospital). My baby was not with me, and was poorly, fighting for oxygen and fighting an infection upstairs in the NNU. My husband was not with me – he was home without his wife and new child. My daughter was not with me – to make me chuckle or distract me from my pain. My God – yes He was with me. Thankfully He is always with me. The Bible tells us He never leaves us or forsakes us (Hebrews 13 v 5), and I know that to be true firsthand.

 P1080936Daddy and his boy, aged 2 days old.

The next day, Saturday 7th July, we met with the doctor who confirmed his suspicions of Asa’s DS. We signed the consent forms for the necessary chromosome testing in a haze, a fog of fear, of worry and of pretending to be fine. I can honestly say that Jon and I thought our dreams were shattered. That second night I sobbed and sobbed, praying God to take the DS away, feeling utterly terrified and alone. What made it worse was that night Asa had two seizures and the doctor couldn’t tell me why.

While pregnant, even though we knew our baby faced a 50% chance of having DS, we didn’t really think it would happen to us. How arrogant we were. How ignorant and foolish. I wish with all my heart we had done our research… We would have seen that our dreams needn’t have felt like they were shattered. I wish then what I know now. That DS isn’t the end of the world. But I can’t go back in time and change that initial reaction. Those ‘bad’ days are lost forever, and I feel guilt for not fully being there for my son. I adore Asa, we both do. He is his own person. DS doesn’t define him. Our dreams for him are similar to Emelia’s – for us to raise him well, for him to be happy, to love God, to go to school and learn, to fall in love and to be loved. Are any of these dreams sounds familiar for your children?

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Sometimes life throws us a curve ball – something that we don’t expect, or imagine, or want, or know how to deal with… Stresses come. Illnesses happen. Death steals. Sin destroys. Yet there is one thing we can do – we can stop saying “why me?” and ask God “what now?” Trust in Him, lean fully on Him with all your heart and go with it.
(It’s ok, I’m telling myself this too, not preaching to you!)

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NG Tubes, Expressing and Frustration!

P1090015Feeding Asa his necessary amounts of milk has been one of his biggest issues. Not to mention one of our biggest frustrations. He just finds it so exhausting and falls asleep after a few sucks of a bottle. Because he has also been fighting two infections, he has been too weak to even try the bottle, so until recently, nearly all feeds have been through his NG tube. While I was in hospital after Asa’s birth, I collected by hand colostrum (the first early stage milk) in tiny little syringes for Asa to have. It was painful at times but I knew it was the best stuff for our little man.

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Left: Expressed breast milk, EBM, in little syringes for Asa’s NG tube.
Right: Taking in the frozen EBM in a cool bag to store in the hospital’s freezer. We took it in every few days as stock of my EBM ran low.

I have ‘double expressed’ since the day I came home from hospital on the 8th July. The hospital is so supportive of giving babies breast milk that they loan out double breast pumps to mums with a baby / babies in the neonatal unit, until the baby is discharged. This is a fantastic service, (you pay a £10 deposit which you get back when you return the pump), and if it wasn’t for this, I doubt I’d have continued with expressing this far. I have a pump that we bought for Emelia, but it is so noisy and slow! This hospital pump is fairly industrial (and pretty much silent!) – I feel like a cow being milked… Ha ha sorry any male readers! I want to do this for as long as possible as I know that apart from praying for Asa, there isn’t a great deal else I can do for him. We will use formula milk when he’s home, once we’ve used up the freezer store!!!

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The ‘dairy’ drawer in our home freezer!!!!

Asa has started to take a couple of ounces of breast milk via a bottle, but is very sleepy and dribbly with it. This is partly to do with low muscle tone (hypotonia), which is a very common characteristic of Down’s syndrome. It means Asa’s muscles are a bit more relaxed than most ‘typical’ babies so it’s harder for him to make the right shape with his mouth.

The Speech and Language Therapist (SALT) team have been involved and we have tried a variety of techniques, such as letting Asa have a few sucks and then withdrawing the bottle, and we’ve tried different shape teats. It’s hard to know what’s best for him, and even the SALT and nursery staff disagree. SALT are not only for speech and language problems, but also deal with feeding and swallowing issues, just incase you were wondering!

Every time we visit, we are encouraged to try Asa with a bottle of expressed milk (if it’s due when we’re there!). These are precious times, as it makes us feel more like we’re parenting our own child! We also do the ‘cares’ (nappy and clothing change, face wash, and bedding change if required). We are starting to feel like pros at knowing where things are and feeling ‘at home’. However, most of the evenings we’ve been in to see Asa, I have needed to express milk! It’s like breastfeeding and needs to be done every few hours. So I often *need* to express while at the hospital (mums, you know what I mean!!!!). I even have my own hospital expressing set and Milton jar! So out comes the screens around Asa’s cot, a pump is wheeled out, the top goes up, muslin cloth covering me as best as possible and off I go, while Jon has a cuddle with our boy, or even better gets to do the ‘cares’ and feeds. I used to feel so self conscious expressing in public, but after 3 or 4 weeks it has become a normal routine for us.

 

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).

What If Blessings Come Through Raindrops?

I’ve heard a song a few times lately on UCB Radio, called ‘Blessings’ by Laura Story. I love it! I looked it up on YouTube, and well, it’s more than just a nice song. The tune is lovely but the lyrics speak volumes. I have never heard anything like it! Each time I listen to it or watch it online, it is challenging – and changing – my perceptions of what a blessing from God means. I pray for some of these things in the song – blessings, peace, family, health, protection, strength and so on. Yet sometimes these prayers for ‘good’ things seemingly go unanswered (which I know isn’t true – God does answer, it’s just that we don’t always like the answer!).

We may ask ourselves, “How can God let this happen?” or “I’m not asking for much, why can’t God give me this one thing?”. Whilst I’ve never really asked God, “Why us?” in relation to Asa having Down’s syndrome, I do often wish he didn’t have it, for his sake and ours. I also wish my little boy wasn’t still in hospital. I pray for God to bring my son home; I miss him – Jon does too obviously – and we want him home. Yet there Asa still lies – away from us, surrounded by beeping machines, the sharp smell of disinfectant, and nurses caring for him in the blue and green uniforms. “That should be me caring for him,” I inwardly, silently cry. Sometimes not so silently if I am honest.

We look on these disappointments in life as ‘bad’ things. Painful. Confusing. Saddening. This song challenges what we think of as blessings. What if blessings come through unexpected things? What if blessings come from painful situations we need to go through? God knows what is best for us and He is in control. I don’t know why Asa is still in hospital or indeed why he had to go into the Neonatal Unit to start with; nor do I know why Asa has Down’s Syndrome, or why anyone is born with a disability. I don’t have all the answers. (I know it’s because we live in a sinful, imperfect world – that’s the short answer!). I know that God has a purpose for him, just as much as He does for each of us. I know that Asa, like Emelia, will be a blessing to us. That he will teach us many things. That our life is going to be a little different than expected, a more ‘scenic’ route perhaps. But that is ok. We will be ok! We ARE and will be, blessed, in ways we can’t yet even imagine… We are just clinging to God right now and trusting Him. It’s all we can do.

To watch the video, click this link – lyrics are below:
http://www.youtube.com/watch?v=4mmgV6mPvb0

Blessings
(Laura Story)

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You’re near?
What if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy?

What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise.

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Blessings – watch the story behind the song:
http://www.youtube.com/watch?v=S5ljV_RA0CM