My goodness, I do not know where time goes! It has already been a month since my last post! My goal was to post at least once a week. I need to dedicate more time to this – so that I can keep track of all of the amazing things that Ciaran and Shay are doing these days. They are growing and developing so quickly – in some ways I wish that I could just slow things down!
I am not really sure where to begin as quite a bit has happened in the past month. I guess a highlight of this month was the One Night Live Concert that I went to with Camilla, Tasha, Geraldine and Sue. This was a benefit concert which all proceeds went directly to the new Sunnybrook Hospital NICU and Delivery Unit which is to open their doors in 2010 (they raised over 15 million dollarsJ The concert line up was impressive. The acts included RyanDan, Jann Arden, Sarah McLoughlin, Josh Groeben and Bryan Adams. Each singer put on an amazing show – and sang way more tunes that expected. Bryan Adams the last act performed an entire concert – singing at least 15 hits – it was truly amazing! The concert did not finish until at least 2:00 am.
A segment of the concert included video footage of the current NICU where Ciaran and Shay lived the first four months of their life which is a pretty crowded, run down place – the video really brought me back to the early days when everything was so touch and go! It served as a poignant reminder of how far Ciaran and Shay have come. I think it was easy for me to put those painful early days out of my mind – and become so consumed with the here and now. I think I needed the reminder as I was reminded of the importance of taking one day at a time and celebrating every little milestone. Instead of getting all caught up with what they should be doing developmentally at certain ages – I need to put things in perspective. Each day is a gift – and every little milestone is something to be celebrated – whether Ciaran and Shay are ahead of the game or a bit behind – everything that they do deserves to be celebrated!
These days I am all about visual reminders. I find that they are very helpful in redirecting me when I need it and I will admit that some days I do need it. Since the boys have been home with me, I wear a necklace everyday with the word ‘Believe’ on it. The word has always been so meaningful to me – I believe in miracles – look at Ciaran and Shay, I believe that things happen for a reason – I may not fully understand the reason now – but one day I know that I will fully understand, I believe that Ciaran and Shay will reach their full potential, I believe that we are not given more than we can handle, I believe in Ciaran and Shay and know that they are fighters and will do well in life. To put it simply, I believe…
So now I get to what is happening with the babies. Ciaran has had a great month. He continues to work extremely hard at home following the OT and PT’s plan for him. His hard work is definitely paying off. He has made significant progress especially in the past two weeks – he is smiling, starting to laugh and generally interacting a lot more. He has been lifting himself up on to his arms which has been quite a feat for him. And drum roll please…this week rolled over all on his own. I had a major adrenaline rush when he rolled over – I recognize for some parents it is a small feat – for Ciaran it was huge and I was so proud of him for achieving this milestone!
Ciaran continues to see the Neurosurgeon every six weeks as he monitors whether or not he will require a shunt. We were anxious about our appointment this month as we thought that this again was a possibility. We were relieved to leave the appointment knowing that the neurosurgeon was happy with Ciaran and hence felt that a shunt continues not to be necessary at this time.
With regards to personality, Ciaran remains sweet, sweet Ciaran. He is quite shy and bashful at times – nothing like his brother! He loves to cuddle up and be held tightly. I just melt when he just stares into my eyes when he is held – there is so much wisdom in his eyes – hard to explain it – just something I feel every time we connect. He too is definitely finding his voice more these days and expressing his wants and needs more vocally which is a necessary survival tactic when you have a brother such as he does!
Which brings me to Shay. .. Shay continues to develop his own little unique personality…I have to admit that he is his mother’s son. He is a spitfire – relentless, determined, stubborn, demanding – he surely won’t take no for an answer! I thought that some of these more trying personality traits were a result of his hernia and hence thought that some of these qualities would subside in him once his hernia was rectified. Not the case. His shenanigans crack me up on a daily basis while at the same time driving me mad – he goes from screaming his head off to laughing away at the drop of a dime – he has me wrapped around his little finger! They both do!
Shay is smiling, laughing, and is dying to get your attention constantly. He will stare at you until he catches your eye and then start giggling and kicking. He gets very jealous when Ciaran gets attention over him. We are already seeing little tantrums when all eyes are not on him. The other day Cris came home from work and picked Ciaran up and threw him in the air – Shay watched carefully and then broke into tears. We proceeded to do this four more times to ensure that Shay’s reaction was purely based on Ciaran getting his Dad’s attention – sure enough it was! Too funny!
We are currently seeing a specialist at Sick Kid’s for Shay's hearing. Before Christmas, he was tested and we were told that Shay had a severe hearing loss in both ears. Cris and I were initially devastated. Upon more thought and consideration, we reminded ourselves how far both boys had come and that this was a small price to pay for how far the boys had come. After Christmas, after further testing, we were told that Shay had a condition called ‘Dyssyncrony’ which is a pretty confusing and unpredictable diagnosis. The doctor said that you can have 10 kids lined up with the same diagnosis – you would have 10 completely different outcomes. Basically, we were told that we would have to wait and see from his development. He did say it was a good sign that he is responding and is able to hear - they will do more testing on him at the end of May and then decide what will be the next steps. We are actually pretty sure that he can hear quite well. These days when he is caught up in a crying fit – he will talk to someone on the phone and will immediately stop crying with wide open eyes – again he is too funny!
I guess I need to sign off with gratitude. We are continually reminded of how blessed we are to have such amazing sons in our lives. We know that we are doing everything that we can to ensure that our boys reach their fullest potential - there is not much more that we can do. We cannot change our situations - we cannot change our boys make up - what we can change is their outcomes by working with them, loving them and accepting them for whoever they are. That is all we can expect of ourselves and others…they are pretty amazing young men already and we are so proud to be their parents!
love to all!
cris, liza, ciaran and shay