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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BIG NEWS

ASA IS HOME!

ASA IS HOME!!

ASA IS HOME!!!

Did you get that?! One more time, ASA IS HOME!!!!!! Our little boy came home yesterday after four very long, exhausting weeks (and one day)!

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Asa finally gets to wear his ‘coming home from hospital’ outfit!

To make it even more of a special day, yesterday was Jon’s parents’ wedding anniversary. And it wasn’t just any anniversary, but Margaret and Ray’s GOLDEN wedding anniversary! We were a bit naughty as we kept it a surprise! We invited both sets of parents round for a cup of tea and cake after we ‘visited’ Asa. The discharge from the neonatal unit took much longer than expected as there was a long checklist to go through, plus we had to feed him (and occupy a toddler, yikes!). I texted both sets of parents to say we’d be 20 minutes coming home. In they walked to discover their little grandson was waiting to give them a cuddle! SURPRISE!

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Left: My mum, Anne, made this cake for Margaret and Ray’s Golden Wedding Anniversary, for our little informal gathering. (With extra special secret guest!).
Right: My mum’s first cuddle of Asa, aged 4 weeks and 1 day old!

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This morning, we took Asa to church without anyone other than our parents knowing Asa was home! No-one really noticed at first, except those sat in the ‘Oasis’ area where we were sat. There were a few whispers, people pointing and trying to crane necks and see what was going on, and Mark Lonney informed Matt Lewis, who was speaking, that baby Asa was in the building! We did inadvertently cause some commotion in Matt’s sermon (sorry Matt!). I must admit, I have been dreaming of this day for ages, finally getting to show off our whole family, and we did it. After church we could barely move for people wanting to see him and talk to us.

We are incredibly blessed to be part of Bethesda – it’s such a supportive, loving, compassionate, prayerful church. I’m in tears as I write this. We have seen and experienced God through these many, many faces, these friends, this family of ours. It feels like home.

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Friday afternoon I had a phone call from the unit to say that Asa might be discharged the following day and would I like to come and spend the night at the hospital ‘rooming in’ to get used to looking after Asa. It was a long and difficult night as Jon couldn’t stay with me, and Asa had to be woken and fed every 3 hours through the night, taking sometimes an hour (or more!) to feed…plus his noisy breathing (stridor) made it difficult to sleep. A lot of the night was spent in tears, but we knew we were close to having him home!

P1090073Our first night at home altogether as a family. Precious times!

Bye Bye NG Tube!

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Asa’s NG tube has come out! At last! After almost 4 weeks of Asa having many wires, lines and monitors attached to his tiny little body, this is the last to be removed. This little tube kept him alive when he was too poorly and tired to feed. Now little man, it’s down to you – show the doctors you’re ready to come home. Show them you are strong enough because you have God on your side.

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“Please Lord, bring our son home soon. I want to be able to look after him myself, cuddle him when I want, feed him and change him myself. I want to go for our first family walk as four Shaws. Oh, let it be soon Lord!”

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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.