Day three of weaning our little man… Judging by his beaming smile, we think he’s enjoying it! Today he ate carrot for the first time – it’s much tastier than baby rice!
On Thursday (1st November), we headed to a Peppa Pig book reading and ‘meet Peppa’ event, as part of the Penarth Book Festival 2012. Jon had the afternoon off work and we kept it a surprise from Emelia until we were getting ready to go. She was so excited to meet her favourite cartoon character! John Sparkes, the narrator and voice for several of the characters in the TV show, read a few Peppa Pig stories before Peppa and George arrived! An orderly queue was formed, and Emelia and I joined the back of it whilst Jon gave Asa his bottle. Please forgive some of the fuzzy photos – we were under pressure to take a few photos knowing there was a queue behind us!!!
We all had a lovely time! Emelia sat nicely during the story time, and LOVED meeting Peppa and George! I must admit, I was somewhat dreading a room full of Peppa Pig loving toddlers, but all the children were great.
Towards the end of the event, I met an acquaintance I knew when Emelia was very little. We were talking about our older children, then about our recent additions, how they were etc. The usual polite chit chat. When talking about Asa, I told her that he has Down’s Syndrome. Telling people this news usually prompts a varied reaction, mostly positive. Today’s was one of the worst. “Oh, I’m sorry.” This was accompanied by “the face”. You probably know the face I’m referring to. That pitying, apologetic, head tilted, sometimes false look…
Excuse me, but why are you sorry? Is our son’s existence something to be apologetic for?! So, please tell me, why are you sorry? Because I’m not. Nor is Jon. Nor are our friends and family. Asa is healthy, happy, content, loved and wanted. Yes, when Asa was born we found the diagnosis of DS difficult to come to terms with. Initially. And yes, even now, we (ok, I – Lizz) may have the odd wobble. BUT PLEASE DO NOT APOLOGISE FOR THE BIRTH OR EXISTENCE OF OUR ADORABLE LITTLE BOY, OR FOR ANYTHING ABOUT HIM. Same goes for Emelia and any child.
The above is what I felt like saying. However, I simply mumbled something like, “No, it’s ok.” Next time will be different… I fully understand that not everyone knows what to say to this kind of news. But how about ‘congratulations’, ‘he’s cute / gorgeous’, even ‘thanks for telling me’ or ‘how are you doing?’. But as the old saying goes, if you can’t say anything nice, don’t say anything at all.
I came across a great blog post when Asa was first born, about what to say when a child is born with Down’s syndrome. It’s not too long, and you can check it out here.
After meeting Peppa Pig and battling through the horrendous rain, we headed to Barry Hospital where Ray is still recovering from his broken thigh/hip. Grandad Shaw hasn’t had too many cuddles with his grandson yet, due to his Parkinson’s, so tonight was a special night. I love our family. Not just our children, but the wider family too. We are incredibly blessed.
On the 2nd November, Asa got to hang out with his great-grandad Lofthouse (that’s my grandad!).
Yesterday (3rd November), we started Asa on his first taste of solid food. It wasn’t anything grand – just some baby rice – but Asa thought it a treat and gobbled it all up! Well done buddy! He is now 17 weeks, which is the earliest you can wean babies in the UK. He does seem ready. However, we’re also hoping it will help with the reflux. Asa struggles a lot with this and is very sicky; for hours after a feed he will continue to bring up small amounts. He has Aptamil Comfort milk formula which is much thicker and heavier than other milks; he also gaviscon in each milk feed plus three doses of ranitidine a day… It’s stressful at times and he always needs to be wearing a bib. The health visitor and dietitian have both given us the go-ahead to wean as normal, and we’re all hoping it will help weigh the milk down so it all stays firmly in his tummy.
I loved this weaning stage with Emelia and I’m excited too about weaning Asa. Today also went well. Keep it up Asa! (or should it be ‘keep it down’?!)
Tonight (4th November), Jon and Asa are off to watch Cardiff City live on Sky at a friend’s house. I dressed Asa in his blue hoody, so he can show his support for the ‘Bluebirds’. I just hope the other lads don’t mind this junior fan joining them for the night! Meanwhile it’s a girly night for Emelia and I. We plan to watch fireworks from the balcony, wrapped up warm with a hot chocolate!
Every so often, while reading articles online or in books, I come across something that I wish I’d had the wisdom, or insight, to write myself! Some things that I read help me to understand a bit more about God’s plans and purposes for each of us. Some things explain how I am feeling to others more clearly than I ever could (I hope that makes sense!).
This is one such piece of writing I wish I could take credit for, but alas, I cannot, for it was written by a theologian with a far greater grasp than me on unanswered prayer. I came across this while preparing for leading a youth Bible study. I was looking at grace and had read 2 Corinthians 12, in particular verses 9-10:
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”
Commenting on this passage, F. Whitfield says this:
“God’s way of answering His people’s prayers is not by removing the pressure, but by increasing their strength to bear it. The pressure is often the fence between the narrow way of life and the broad road to ruin; and if our Heavenly Father were to remove it, it might be at the sacrifice of Heaven. Oh, if God had removed that thorny fence in answer, often to earnest prayers, how many of us would now be castaways! How the song of many a saint now in glory would be hushed! How many a harp would be unstrung! How many a place in the mansions of the redeemed would be unfilled! If God answered all the prayers we put up to Heaven, we should need no other scourge. Blessed it is that we have One who is too loving to grant what we too often so rashly ask.”
There’s not a lot more I would add to this right now… I am beginning to emerge from a haze of fear, uncertainty and feeling ‘lost’ regarding little Asa’s Down’s syndrome. I am feeling a lot more positive. In those early days I begged hard for God to remove the extra chromosome from each of Asa’s cells in his tiny, perfect body. God said no. He has not removed this pressure, this disability, from our boy, but He has given us strength to bear up, increased faith in Him and an incredible supportive family, friends and church. I’m starting to think that all will be well, and actually starting to believe it now. You know sometimes, if you tell yourself something enough times, or hear God say it enough times, only then you start to believe it… I’m at that point! PRAISE GOD!
I came across this video recently, ‘JUST LIKE YOU’. I have watched it many times, possibly ten times. I am sure I will watch it several times more! I have shared it on Facebook, Twitter, e-mail and now on the blog. I LOVE this film. I really do! It’s a simple production featuring three teenagers and their friends. Three of these great teens have Down’s syndrome. I love it because these teens are just like their friends, and this is one of the first times I have seen three individuals with DS communicating so well, sharing their school goals, sporting achievements and social lives.
Please watch this film and share with your friends. Together we can raise awareness of what DS is and what it means, because as one of the teens says, “Understanding makes it easier to accept.”
Some of my favourite quotes from the film:
“Anything new is a little scary at first…”
“No-one is exactly the same. We all have our talents… Characteristics… Strengths and Challenges.”
“Understanding makes it easier to accept.”
“I have Down’s syndrome… I am not called Down’s syndrome. Down’s Syndrome is not all that I am.”
“Please don’t call her a Down’s syndrome kid or a Down’s kid.”
“Down’s syndrome is just something I am born with… It is just one part of who I am.”
“Just treat me like any other kid.”
“Invite me to your birthday parties.”
“Don’t baby… Most of the time I can do it.”
“Slow down… Please wait for me to finish talking.”
“Just give me time to do stuff, I am worth the wait.”
“We’re all different, in our own ways.”