“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!

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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!

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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.

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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

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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. :-)

Treasure Baskets and Chicken Pox

Oh dear, our poor little boy has chicken pox. Emelia had it at the end of January, quite mildly really, so we expected Asa to get it the same time. However, two weeks later, here they are. Our health visitor warned us that Asa would likely have it worse than Emelia as he has been in direct contact with the virus… great. And she was right! The first spots appeared on the 6th February, and every day more bright red, sore looking spots have crept over his little body. Thankfully he isn’t trying to scratch the spots.

Aww my poor little boy…

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Asa asleep in my arms after a very grizzly, milk-refusing kind-of-morning!

20130207_151912Our little man had the pox much worse than Emelia. I’m glad he’s had it now as hopefully he won’t have it again. He’s too young to be trying to scratch the spots so we’re hoping there will be no scarring. Emelia hasn’t scarred either, phew!!

Again, I find myself unable to be in public spaces with the children. We are in quarantine in the house!!! Today is Sunday, and Asa and I are at home. We are sad to be missing church, but at the same time, it is rather nice to have Asa all to myself! …And it’s been so quiet!

This morning, after breakfast, and Jon and Emelia had left, I read Asa a story. It felt a bit strange not having Emelia clambering to join us! We also had chance to get out the ‘treasure basket’ as shown to us in the ‘Speak and Learn’ DS group. Treasure basket is a basket filled of natural materials. In ours, we have a bowl of uncooked pasta, wooden nail brush, a small pebble, baby brush, child’s wooden spoon, feathers (children’s artistic ones, not germ ridden bird feathers!) and a battery operated fan (I know this is not ‘natural’ but what we want is the air!)… The aim of the treasure basket is to introduce Asa to various textures. Some children with learning disabilities have sensory processing disorders whereby they don’t like certain textures. This can be items in contact with their skin such as certain clothing, food texture (something that I recently discovered affects me mildly), wind on faces etc. Not all babies with DS will have sensory issues. Some will, and this is where the treasure basket comes in to play.

What do we do with the treasure basket?

- Put Asa’s hands and feet in the bowl of pasta. This is his favourite treasure activity.
– Rub Asa’s hands, feet, legs, body with nail brush (funnily enough, he’s isn’t a fan! …But nor would I be!)
– Fan Asa’s body all over.
– Asa to experience weight, e.g. holding the pebble in contrast to the feather.
– Let Asa hold different items to feel them. The wooden spoon, even though is a child’s one, is still too big and he knocked himself in the head. No Asa, that wasn’t what was supposed to happen!

P1090864Asa deciding what to explore next!

So, while we have missed being with our church family this morning, we have had some lovely rare mummy and baby alone time. I love Emelia with all my heart, but it is great to be able to have a couple of hours to focus on the therapy and structured play activities that Asa needs to help his development.

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The First Few Days of October

I haven’t seem to have had much time to sit down and write many posts of late. Since I last wrote, Jon’s dad, Ray, has been in hospital and is still there. He had broken a bone in his thigh/hip, and has had other complications. However, he seems to be on the mend and we are hoping he will be home shortly. Ray had his 75th birthday in UHW on 4th October, a place of many memories for us all. We took both the children in to see him, which I am sure made his day.

On the 1st October, Asa had his first Community Paediatrician appointment at Llandough Children’s Centre at the hospital. It was a little bit daunting as the doctor made a long list of those specialists Asa needed referrals to. Moments like this I realise that our life is a little different to some of our friends’ and indeed, different to how I imagined it. There seems to be so many appointments at the moment, but I’m told the first year is rather intense and then it gets better… After all, these appointments are for his benefit!

Also on the 4th of this month, Asa had his feeding clinic appointment with the speech therapist (feeding / swallowing) and dietician. We were initially referred due to Asa’s difficulty in feeding. They are pleased with him, as was I, even though he hardly drank his milk, and he will be seen again soon to monitor his progress.

This weekend was our church’s ‘home’ teaching / fellowship weekend with Mike Kendall.I was able to go Saturday’s morning session, which was about encouraging others and mentioning them. I’m taking away some useful ideas that I want to implement. For example, I want to have specific people in mind to talk to each Sunday and make a bee-line for them. Sometimes it’s hard to get to speak to people you wish to speak to as Bethesda is so busy and buzzing each week – a fab problem to have!! In the afternoon the four of us headed to Barry Fire Station where we had a car wash and Emelia got to sit in the fire engine and pretend to drive it – oh, she loved it! We bought her a toy firefighters helmet – she loved being Penny from Fireman Sam!!! In the evening, we were all able to attend the teaching session and the fellowship meal. Sunday, the great teaching continued. It’s been a great weekend. A busy, ‘normal’, family weekend with our two beautiful children.