Looking Back, Looking Up.

I am behind with this blog. I am still catching up from a while ago – I scribble down notes, or make a quick rough draft in Microsoft Word, and finalise it when I can. Part of the problem is that Jon and I can’t decide on a name for the blog! Get your act together Lizz!

[Author’s note: We finally decided on Down With Asa, one of the first we ever thought of! Funny yet frustrating]

Tonight I have been working on the timeline of Asa’s life so far, from the pregnancy through to now. Simultaneously, I have also been working on the pieces of the puzzle that made up the prenatal potential diagnosis of Down Syndrome, through to receiving the confirmation a few days after Asa was born.

As a result, it has been an emotional night reflecting on Asa’s journey through the pregnancy and those early weeks in the Neonatal Unit at UHW. It always happens when I’m working on the blog. Going back over those memories that would prefer to stay hidden in the deep, dark place of my brain.

Tonight I’ve been reliving the moment we found out there was a possible problem and the awful statistics given to us that are forever burned into my heart. 50% chance of a chromosome abnormality, 10% chance of a heart defect (but no chromosome abnormality), 15% chance the baby would not survive (e.g. miscarriage or being stillborn), 25% chance of no complications and a typical, healthy baby. When we were first given these statistics, I saw them every time I closed my eyes, in bright yellow lights. It was awful. Now I am thankful that these memories are fading, and that God comforts us.

“He [God] tends his flock like a shepherd:
He gathers the lambs in his arms
and carries them close to his heart;
he gently leads those that have young.”

~ Isaiah 40 v 11

So while those horrible memories and statistics are at the forefront of my mind again as I work steadily on Asa’s story, we can move forward in the knowledge that both our children are perfect, healthy, and so very precious… Also in the knowledge that we have an awesome God who never, ever leaves us, and who is gently guiding us.

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?” ”

***

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?

***

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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Fear Vs. Faith

Tonight has not been a great night. Tonight has been one of those fear-stricken, heart-breaking, joy-stealing kind of nights. I get like this sometimes, where I allow – I choose – fear to rule over faith in my wonderful Lord. I hate feeling like this.

Can I just say, I am not depressed, in case anyone is wondering? I don’t want people to think I’m sad all the time, because I am not. Nor am I rejecting Asa by feeling sad sometimes, because I love him very dearly. I am rejecting the DS, which is impossible, as it is literally a part of him, in his very DNA and that makes him who he is. But I am scared of the unknown future. I am lonely and upset that our life is different than expected. Not in a bad way, it’s just different. (Remember the Welcome to Holland’ piece of writing?)

Alas, I cannot help myself, for I am weak and miserable tonight. Jon and close friends will tell you that I am a worrier. Regarding DS, I read a lot of information on websites – all the positive ones I lap up in eagerness, and all the negative, scary ones seem to build up without me realising it, until a floodgate is opened in my heart, and an outpouring of what I can only describe as grief gushes forth and tears fall like red hot lava.

I came across a DS site for new parents. I clicked on the ‘real story’ section, and I realise that these stories from parents, siblings and those with DS themselves, are supposed to be positive and encouraging, but tonight, I have not found this to be the case. One of the stories that most upset me was about the effect of DS on siblings, and as much as it was supposed to be encouraging, I just felt extreme sadness for Emelia. There were other stories too that tugged my heart or caused fear. In the end, it was too much for me. I ended up getting very upset, sobbing for God to take the DS away from our precious boy. I prayed for every single part of his body:

…Head and brain development…

… ears

… eyes

…mouth

…speech

…his stridor (noisy, squeaky breathing)

…stomach and reflux

…legs

…feet

…his low muscle tone

… ability to walk

I sobbed as I prayed for each of these body parts and developments. I know this post may offend families of those with a disability or DS, but I’m being honest and very vulnerable right now. Usually when people ask me how I am, I am real with them. It’s who I am. Why would I be different with an online format? If you don’t like it, you don’t have to read it.

As I was praying tonight, alone in our bedroom, I asked God to send Jon down to me without me having to call out to him. I needed my husband to support me but I couldn’t move. A couple of minutes later, Jon came downstairs and found me in a bit of a state. GOD IS SO FAITHFUL. Jon prayed with me, for me, for Asa, and indeed for our whole family. He is my rock and is remarkably strong.

After I had cried my way through each of Asa’s body parts, I had the idea of asking people in our church to volunteer to pray for a specific area of Asa’s development and continue to do so as he grows… I’m not sure if this will come about as it could potentially make people feel awkward. However, if anyone would like to pray for a specific development, then note it in the comments or let me know in some way.

Sadness yet Hope

Over the past week or so, the first line of this hymn has kept coming back to me time and time again: O Love that wilt not let me go”… However as I didn’t know the rest of the lyrics, I finally ‘googled’ it tonight. Oh, wow. This hymn could have been written by me if I was clever enough! It explains so much of how I am feeling (not all the time, but occasionally I allow the dark clouds to hang over my head) – the sadness, but also the hope and acknowledgement of God’s love, compassion and goodness.

Although it’s an old hymn, I love this new version by Indelible Grace – click here to listen.

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O Love That Wilt Not Let Me Go
George Matheson (1882)

O Love that wilt not let me go,
I rest my weary soul in thee;
I give thee back the life I owe;
That in thine ocean depths
Its flow may richer, fuller be.

O Light that followest all my way,
I yield my flickering torch to thee;
My heart restores its borrowed ray,
That in thy sunshine’s blaze
Its day may brighter, fairer be.

O Joy that seekest me through pain,
I cannot close my heart to thee;
I trace the rainbow through the rain,
And feel the promise is not vain,
That morn shall tearless be.

 O Cross that liftest up my head,
I dare not ask to fly from thee;
I lay in dust life’s glory dead,
And from the ground there blossoms red
Life that shall endless be.

***

Some photos from Asa’s tummy time earlier this evening – he’s doing so well with this!

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