Dear M&S

This is the message I wrote on Marks and Spencer’s Facebook page after Seb White, a handsome little 4 year old, was included in the company’s Christmas advertising. Oh, and this little boy just happens to have Down’s Syndrome. He isn’t singled out, or given any special treatment. He is just ‘one of the gang’ – true inclusion at it’s greatest!

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Dear M&S,

I just wanted to say a big thank you from my family, especially my handsome 11 week old son, Asa. For anything in particular? The lovely clothes people have bought for Asa? Yes. The beautiful gifts people have bought us from your company?  Yes. For gift vouchers so my husband & I can go and choose gorgeous outfits for our two precious kids? Yes!

But more recently – Friday in fact – we learned that history was made. We learned that M&S are to feature Seb White as a child model in the Christmas magazine. Today we read a great article about him in The Times and The Daily Mail. You see, our adorable Asa also has Down’s Syndrome, like Seb. It’s taken us a while to come to terms with this and if we are honest we have had many tears (well, more so me!). So to see a huge company like M&S proudly feature Seb, a beautiful boy with a cheeky smile and adorable sparkly eyes and who also has DS…well it melts my heart. It makes me feel that we are not on our own, that the tide is turning, that our children will be seen as individuals first and not just their condition, which is just a small part of who they are.

I am so proud of M&S – this makes me proud to be British – and I hope that other companies will follow your high example and include people with disabilities in adverts, particularly in fashion and lifestyle! So well done M&S and thank you from the 4 Shaws from Dinas Powys! …especially from Asa who will grow up to be whatever he wants to be!

Lizz x

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.

Psalm 66

I read this Psalm 66 today. I love how sometimes you come across something you’ve read before, but see it in a different way. All my life I have known God is good. Everything He does is good. His very character is good. He does not make mistakes. Sometimes, life is not easy. I’m not referring to Down’s syndrome here, although I acknowledge that it has its challenges, both now and in the future! But life in general can be hard going and battle heavy for us all. For example; work, a toddler’s tantrums, the busyness of needing to get things done, motivation, exercise; the list goes on. It can be easy to slip in to a mundane routine and not appreciate or recognise God’s goodness amongst the trials or ordinariness of our tasks.

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*BOOM* comes a reminder of God’s goodness. *BOOM* here’s a reminder of why it’s good to share our lives with each other. *BOOM* God is AWESOME – the Bible even says so! Loving getting ‘down with the Bible’!

Here’s the Psalm for you to read for yourselves. See what I mean?!

Psalm 66

Shout for joy to God, all the earth!
Sing the glory of his name;
make his praise glorious.
Say to God, ‘How awesome are your deeds!
So great is your power
that your enemies cringe before you.
All the earth bows down to you;
they sing praise to you,
they sing the praises of your name.’[a]

Come and see what God has done,
his awesome deeds for mankind!
He turned the sea into dry land,
they passed through the waters on foot –
come, let us rejoice in him.
He rules for ever by his power,
his eyes watch the nations –
let not the rebellious rise up against him.

Praise our God, all peoples,
let the sound of his praise be heard;
he has preserved our lives
and kept our feet from slipping.
10 For you, God, tested us;
you refined us like silver.
11 You brought us into prison
and laid burdens on our backs.
12 You let people ride over our heads;
we went through fire and water,
but you brought us to a place of abundance.

13 I will come to your temple with burnt offerings
and fulfil my vows to you –
14 vows my lips promised and my mouth spoke
when I was in trouble.
15 I will sacrifice fat animals to you
and an offering of rams;
I will offer bulls and goats.

16 Come and hear, all you who fear God;
let me tell you what he has done for me.
17 I cried out to him with my mouth;
his praise was on my tongue.
18 If I had cherished sin in my heart,
the Lord would not have listened;
19 but God has surely listened
    and has heard my prayer.
20 Praise be to God,
    who has not rejected my prayer
    or withheld his love from me!

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I know that some of our posts recently have been somewhat ‘negative’ – please bear with us – we are learning new things and adapting to our new life, and with that comes the ‘ups and downs’. From the start, we vowed to be open and honest in this blog, to share the heartache, but also the great, exciting stuff of raising our two precious children. Yes, Asa has Down’s syndrome. But he is first and foremost our son – our adorable, smiling, happy, playful little boy. Emelia is also a joy – full of life, hilarious, fun to be with and beautiful. This blog is also about our faith journey too… So how well does this Psalm fit in with that?! Verses 5 and 16 talk about sharing what God has done – “come and see / hear”… That’s what we hope to be able to do, to invite you all in to our lives, in to our adventure. We are looking forward to sharing what God has been doing, and IS doing in our lives and in our church.

 P1090262A sunny autumn, family day at Barry Island beach…

Facing Reality

This evening, Jon and I (along with Emelia and Asa!) met with Dr Roberts in our home. Dr Roberts’ name has come up several times since Asa has been born, so it was nice to finally meet her. She is the children’s hearing specialist. She went through the summary from Asa’s hearing test a few days ago and explained things to us again about the high pitch sounds. Asa will have more hearing tests in the future and these will build up a more comprehensive picture of where Asa’s hearing actually lies. *Gulp!*

The options we have for helping Asa’s hearing:

1. No intervention yet; watch for signs Asa can/can’t hear, monitor the hearing loss;

2. Hearing aids, which would involve fortnightly visits to UHW for the first year or so to check the fit, get new moulds as necessary and check they are working effectively. This option is only possible if Asa’s ear canals are big enough!

3. Softband bone conductor hearing aid. This is a bit like a hair band with a single hearing aid attached which sit behind the ear / on the skull to conduct sounds through the bone to the cochlear. It is easier to use for little ones.

Dr Roberts said that she’d leave us to make a decision and would likely contact us in a week or so to have another discussion about the way forward. I love that there is no pressure and the doctors and audiologists are willing to listen to the parents. Part of me does not want any intervention – just let Asa be a little baby, let us just enjoy him, no more medical appointments; I want it to go away. Another part of me wants what is best for him and the desire for him to be able to fully hear everything. And yet another part of me is concerned for his speech development and wants immediate action to help him!!!! We’ve been told that Asa’s hearing may get worse over the winter months due to coughs, colds and general congestion, and that this worsening may be temporary or may gradually get worse. *Another gulp!*

I am still finding the fact that Asa has a hearing loss in both ears quite difficult to come to terms with. I know that it’s not the end of the world. I keep remembering my wise friend Emily saying that, “yes, there’s a problem, but at least there is a solution to this particular problem,” and she’s so right. This problem can be helped. Plus God is in control of it all anyway.

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Our little Superman Poser!

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Tonight I’ve had a fab time reading my Bible. I haven’t picked it up as much as I’d like lately, but I’m blessed when I do! God’s word, the Bible, is living and is relatable even after thousands of years! Tonight I have been reading Nehemiah:

“…Do not grieve, for the joy of the Lord is your strength”… (8v10)

“Stand up and praise the Lord your God, who is from everlasting to everlasting. Blessed be your glorious name, and may it be exalted above all blessing and praise. You alone are the Lord. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you.” (9v5-6)

Every now and then I re-discover (or discover for the first time) a gem hidden in God’s word. This is one of my favourite passages. Chapter 8v10 is a rebuke. Those who were listening to Ezra and the Levites reading and teaching the Law realised the severity of their sins and were deeply grieved by them; but Nehemiah is saying to the people not to grieve their past sins, God has forgiven them – instead focus on God and He will strengthen us and be our joy. How apt for me. I find it hard to let go of the sin in my life and it upsets me that I continually fail God and those I love. But the joy of the Lord is my strength! He graciously upholds me when I mess up, which I do, with alarming frequency.

I love chapter 9, especially verses 5-6. It’s a reminder that God made (and makes) everything, He alone gives life. God didn’t make a mistake when He created our little Asa, nor did He with Emelia or any baby born. Nehemiah 9 is about the people of Israel, God’s special people, letting God down again and again. Yet God forgives time and again! I’m reminded of myself here, with alternating between faith and fear; sadness and joy; hope and despair. God understands and is faithful to forgive me, just like He did with the Israelites. This chapter demonstrates the compassion, grace, forgiveness, love and mercy of God…

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Oh God, how awesome You are that you love us so much! I praise You for being willing to forgive me even when I least deserve it. Not just once, but time, after time, after time!!!! I’m thankful for your grace and mercy, for You loving me, a broken and weak woman!