“We Know What We Are But Know Not What We May Be”

Since January, I have had recurring gallstone attacks. The pain is often unbearable, and most of the time, I would rather experience labour again than these attacks. Honestly! Many of you will have gallstones too, but will remain unaffected. Every now and then, these gallstones block the main duct of the gallbladder resulting in this horrendous pain that cannot be alleviated by the cocktail of prescription drugs I currently have. Emelia knows that sometimes mummy has a “very sore tummy” and she is so caring, so compassionate and so kind (usually!). A lot of these attacks have been on the weekend which means Jon is able to help out with the children and sort their meals. I should add here that the majority of these attacks come in the early hours of the morning, usually around 3-6am and can last anything from 1 – 8 hours, sometimes lasting on-and-off for a couple of days.

This weekend, I was ill again. Jon took the children out for the morning while I caught up on some much needed rest. When they all arrived home on Saturday morning, Emelia had made a card for me (ahead of Mother’s Day the next day). She rushed straight up to me, gave me a cuddle, handed me the card and proceeded to ‘take care’ of me. She brought me the remote control for the TV (she knows me well!), and came over with her Peppa Pig medical kit. Nurse Emelia was brilliant and gave me a thorough poke and prod!

Jon took the children over to the church for an open day. This lovely photo was taken by the very lovely Bethany Newberry – thanks Bes!

Emelia taking care of mummy! (This is not my finest photo – remember, I was poorly!!)

Emelia’s kindness made me wonder about her future career. Lately, I’ve been more preoccupied with Asa’s future; what will he do? Who will he be? Will he attend college? Will he have a job one day? What kind of job might he have? This weekend, I have been thinking more about Emelia’s future. This little girl of ours is… well, where do I start? She is independent(!), caring, funny, assertive(!), chatty and compassionate. Seeing how well she ‘took care’ of me, I wondered whether she might become a nurse or a doctor. My best friend Amy is a nurse and Emelia often refers to her as ‘Nurse Amy’. Emelia would make a great nurse. She would also make a great entertainer of some kind, as she loves to entertain and put on ‘shows’ in the evening, singing and dancing around her piano. One of her favourite things to play with is her wooden kitchen and all the food items stocked there. She is forever having tea parties and ‘cooking’ – perhaps she’ll be a chef… She is very inquisitive too – always asking “why?” or exploring new places or things, so maybe she’d become a police woman, detective or work for the MI5 or MI6!

Then I moved away from thinking about Emelia’s career because, to some extent, it doesn’t really matter to us what she does, so much as who she is. We pray she’ll grow up to know and love God for herself, but this cannot be forced (nor should it be) – she’ll have to make that decision for herself. She is incredibly friendly and social, she loves running in the fresh air and she enjoys meeting new people, whether that is at the beach, park or soft play. She is funny and kind. One of my favourite things about her is that she regularly says “I love you mummy” and “I love you daddy” – and she even adds in sometimes “I love Asa” and my heart melts that little bit more. This little girl has a lot of love to give. I know that as both our children grow up that they will be very special to each other (among the usual sibling rows and complaints!). We’ve already seen how sweet and loving Emelia is towards her baby brother and we know she will be an amazing sister to Asa when they’re older too.


I’m reminded of a t-shirt that a beautiful young lady, Natty, wears. The t-shirt has a quote from Hamlet:

“We know what we are but know not what we may be.”

To see the lovely Natty wearing the t-shirt, click here

How apt are these words? Asa and Emelia are individuals and no-one can know what the future holds for them, only God Himself knows that as He has a plan and a purpose for each of their lives. Asa has Down’s syndrome, that we already know, but the world is his oyster, just as it is for Emelia. Yes, we know things are going to be a bit different for Asa than they will be for Emelia, but opportunities are increasing for people with Down’s syndrome and the future is wide open! We are looking forward to seeing Asa’s personality, passions, creativity and dreams come out, just as much as we are with Emelia. We have such hopes and dreams for these two precious children of ours – and we hope you do too.

So to any parents of babies or children with DS, or if you have DS yourself, don’t lower your expectations, dream big! The world is your oyster. xx


20130314_115014Later on in the week, I took Asa to his physiotherapy appointment whilst Nanny and Grandad Shaw looked after Emelia for me. Physio always seems to wipe poor little Asa out and he always sleeps well afterwards! How cute is he!!!

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After Asa’s physio, Nanny and Grandad Shaw had Asa while he napped so I could take Emelia to the park for some quality one to one time. Sometimes I feel guilty that I don’t spend enough time just ‘being’ with Emelia, so I love, love, love getting some time with just her. One of her favourite things to do is to visit the park – her smile is proof enough of that. What a beautiful smile she has! There isn’t anything much better than a laughing, happy, contented child. Jon and I are so blessed to have both our wonderful children in our lives. We are also blessed to have family and friends nearby who are willing to help us out with childcare. Thank you especially to Nanny and Grandad Shaw. 🙂

Letter From The States

We had the following letter today from my friend’s pastor, Steve. I have never met Steve. I have never spoken to him. He lives in California with his wife and grown up children. My friend Chloe is working with the church there, doing wonderful things.

Steve heard about us having little Asa, who has Down’s syndrome. His son, Mark, also has Down’s syndrome. He felt compelled to write to us, to encourage us and remind us of our important role in raising both our children. I have read this letter several times, and it is incredibly moving each time. Steve is so open and honest, and it felt like my heart was being pierced the first few times I read it, through blurred and tear stung eyes. I think this may be the turning point in me fully coming to terms with Asa having DS. It’s as though Steve has affirmed that any negative feelings I may have once had were valid at the time but don’t matter now – that in those first few weeks, that was probably the worst I felt about my baby. How things have changed! He has affirmed that it’s ok to be upset and confused about how our new life many look…

So Steve, a new friend across many miles, I publically thank you and pray that this letter may inspire or encourage others out there too. Even just one person, regardless of whether they have a child with DS or just a friend reading our updates.


Lizz & Jon,

Chloe just told me that you have had a baby with Down’s Syndrome several weeks ago. The subject came up because my son Mark was just in here making us laugh. Mark is 29 years old and also has Down’s. I asked her if I could write to you and tell you what our life has been like with our son. We went to the hospital not knowing anything could even possibly be wrong. Yet when I looked in my new son’s face I knew the truth. I was very upset but mostly just confused and did not know what to feel. We thought we had failed somehow or been forgotten by God. I was very numb and when people called to congratulate me I didn’t know what to think.

My pastor was out of town when Mark was born yet when he heard about our situation he called me on the phone. He said that God must have thought very highly of my wife and I to have given us such a gift as Mark. This has proven to be the most true statement we have ever heard in our life. The genetic specialist said, this baby will just require more love, and he will return more love to you than you will be able to give. A parent of a Down’s child came to the hospital and said, this right now is the worst you will ever feel about your baby having Down’s. These statements also have proven to be true.

 Lizz and Jon, yesterday was my birthday and so many people told me that I have been a blessing to them; Chloe made my cry with the things she said to me. The reason I tell you these things is that who I am and what I do, is only because I have Mark in my life.  I am a better man, I have love for others, my other children are great people, I have a soft heart, even my fathering of my church people is because of him. I can cry in front of people because of my son and his unconditional love in my life. Hold on to each other and love this child more. Learn from your baby and let God have His way in you through this time. When you hurt, love more and you will one day testify as my wife and I have that we shudder to think who we would be today if it wasn’t for Mark in our lives. When I pray I say thank you for such a gift as this boy. Lizz and Jon, God must have thought very highly of you to have given you such a gift. Thank Him and cherish and love your child and more love will fall back upon you than you can possibly imagine.


Pastor Steve Orsillo


The Perfect Tool

“A walk through the scriptures shows several times when the perfect tool needed in the hand of Almighty God was a child.”
Wess Stafford

This was tweeted yesterday by Compassion, an international child sponsorship charity. I read it at first without thinking too much about it. Then I read it again. And again. Then once more. This will be true of Asa, I realised.

Some examples of children / young people in the Bible who God used in a mighty way:
David was a mere boy when he killed the huge giant warrior Goliath. Josiah became king at the tender age of eight years old, doing what was right in God’s eyes. Jeremiah said to God that he was ‘just a boy’ and God replied, “You must go everywhere I send you, and you must say everything I tell you to say. Don’t be afraid of anyone, because I am with you to protect you,” says the Lord. (Jer. 1 v 7-8). When Jesus went missing as a young lad of twelve, Mary and Joseph found him in the temple teaching adults.

Soon our little boy will be home from the Neonatal Unit at UHW, God willing. Then the fun begins!!! The breast milk expressing will cease. The sleepless nights. The never ending bottle feeds will start. The encouraging of our little sleepyhead to finish his bottles. The first time we take him to church to show him off to friends and family. Our first family walk as a family: with mummy, daddy, Emelia and Asa. The teaching of the Bible and about Jesus. The family prayer times. This list goes on!

On the many ‘bad days’ I have had lately it can be difficult to look in to the future without getting upset. But even on those bad days, we know that God is good. We have a hope – an assurance actually – that God has a purpose for Asa. How do we know that?

Jeremiah 29 v 11: For I know the plans I have for you,’ declares the Lord, ‘plans to prosper* you and not to harm you, plans to give you hope and a future”

Asa is, and will be, a blessing, both to us and to others. He will teach us many things and we’ll all learn about each other as we grow. He will teach acceptance, patience, joy among trials and the importance of celebrating difference. He will teach others too in ways we cannot yet imagine. Our dear friend, Vicky Pici (some know her as Bibby!), recently said, “Asa might be the greatest preacher in your family”. Wow, what a thought!!! What an encouragement this precious friend is at this time.

A letter to our son:

Asa Jonathan Shaw, our beautiful, darling little boy. You have a purpose to fulfil! You have been created for a reason. You will teach many people many things. You will bless and encourage. You will be a joy yet stubborn… Like your daddy, and his daddy, and his daddy too (I’ll get daddy to tell you the story when you’re older!). Ultimately, we know that you will be a perfect tool in the hand of God, for His glory. One day. Soon. Goodnight sweetheart. We love you son, xx


*(NB. ‘prosper’ here doesn’t mean financial gain or reward)