Here is a poem that I was given by one of my therapists that helps provide perspective of what it is like to raise a child with special needs. I find it very enlightening! I don't believe everyone mourns...I get that some people would...and I understand...however, I think that after seeing the boys rough start, I am constantly reminded of how blessed I am to have both of the boys in my life and doing as well as they are doing...and there really is no turning back or second guessing...life is exactly what is supposed to be!
Welcome to Holland By Emily Peri Kingsley
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed us in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...And you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, that's where I was supposed to go. That's what I planned."And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...in Holland.
Wow….what a crazy year! So much has happened in the past six months since I last posted…not really sure where to start. I am writing as a means to try to keep track of everything that is going on in our crazy world. I have been horrible at blogging the latest, as Ciaran and Shay continue to monopolize much of my days – which I am happy about, however, they leave me with little time to get much else done…the time and energy that goes into them could not be spent in a better way….this I know for sure as both boys are continuing to surpass expectations and they are developing in two beautiful, content and engaging little boys…they remind me everyday how blessed I am to have them in my life and the importance of celebrating the little things in life!
Where do I begin...probably the most significant thing that has happened in the past six months is that Cris was diagnosed with Hodgkison’s Lymphoma in late August. As a result, he has required treatment every second Thursday for the past five months. Thankfully, they caught the cancer relatively early and his prognosis was good from the outset. I think that this enabled Cris to stay strong and focused during the difficult weekends that he received treatment. We received fabulous news right before Christmas, that being that the chemotherapy is working and the cancer is no longer metabolizing. Tomorrow he receives his 10th round of chemo. From here, he has two more treatments with the last being on January 29, 2009. We both are so looking forward to putting this behind us. As I already mentioned, Cris dealt with the diagnosis and treatment with a great deal of strength and dignity. I so respect his glass half full approach to this unfortunate situation.
Cris being sick has again reminded us of how truly lucky we are to have such supportive, caring and loving family and friends. Our family and friends have sooo gone beyond being generous. Many times in the last few months, I have been overwhelmed with tears just knowing how very lucky I am to have the people I have in my life. From the bottom of my heart, we say thank you! For the thoughts, prayers, mass cards, endless meals, babysitting services, cleaning services, swimming helpers, phone calls, emails, people who were there to listen – Cris and I are forever grateful.
On to the babies… the most important thing to say is that Ciaran and Shay are doing amazing!!!! They continue to amaze me on a daily basis. Their little personalities are continuing to get bigger and bigger. Shay being the determined, stubborn and a lit hot headed son (sound like middle child syndrome???) and Ciaran being the one that loves people and faces. He is always so proud of his accomplishments which is so clear through his body language! I cannot express how glad I am that I took another year off to be at home with them this year. I get to see on a first hand basis how their hard work is paying off in so many positive ways.
Here are a few significant things that are happening in specific realms of their development in the past few months….
Ciaran has made huge gains in the past five months. His vision has improved significantly since we started patching him. At the moment, we are patching him for 2-4 hours a day to continue to make his weaker eye stronger. If we weren’t patching, his eye would start tuning out the input from his right eye (weaker), and he eventually would have gone blind in that eye. My thesis was on Early Intervention and the plasticity of the brain – never would I have imagined how truly powerful early intervention is…we are so blessed to live in such an informed world! If Ciaran’s vision continues to improve in the next few months, the optical surgeon will consider straightening Ciaran's right eye as he feels this will further assist in optimizing Ciaran's vision as his eyes will see better if they are moving together. I will have to get a picture of Ciaran being patched – he definitely is no longer so accepting of this time. Now he constantly tries to pull his patch off – so we have to put a water bottle on his elbow to block his arm from reaching the patch plus his hand is socked for the entire four hours each day. This is causing him to get a bit behind from a fine motor perspective, however, in the whole scheme of things – we know fine motor is something we can work on in the future – Ciaran’s vision requires our utmost attention now – as if he doesn’t use it – he will lose it!
We saw the Chief of Neurosurgery a few weeks ago for a second opinion regarding Ciaran’s need or lack thereof for a shunt. We were so relieved that he was in agreement with our current Neurosurgeon – that a shunt at this time is not worth the risk as there continues to be no pressure and there would be no therapeutic benefit of doing so. He did tell us that Ciaran’s back ventricle is extremely large which is interfering with motor center and vision center of the brain which ultimately could be contributing to some of the delays we are seeing – this discussion got the developmental team thinking at Woman’s College (they are the BEST) and they decided that they would get Ciaran fitted for a walker so that he can feel what it is like to move and have a better view of the world. We know that vision drives motor and motor drives vision…and for Ciaran – both are compromised. The walker was the best Christmas present ever (well equal to Cris’ fantastic news). Ciaran is moving all over the house. He is loving the walker….he is loving moving purposefully…it is awesome!!!
From a cognitive standpoint, Ciaran and Shay are both doing amazing. Every day, I feel so much pride when they share with me their new tricks. They are both babbling and imitating tonnes. They both have at least ten words and are learning new ones all the time. They clap, give kisses, blows kisses, gestures all down on demand which we are happy with! They can tell us who says quack, quack, quack, and what the horse, sheep, bear, lion and cow say. They are also pointing to body parts on command which we are thrilled with!
Along with his cognitive development, Shay is doing great in all other areas of development. He is very animated and engaging. He is a typical boy – loves to play and play with things for hours on end. At the moment, he loves his stacking cups, and his stacking rings. He continues to make us believe that he hears everything we say as he consistently follows directions from us (i.e. show us your eyes, nose, tongue, etc). His last hearing assessment did not show any improvements (I am not sure how accurate the testing was as he was much more interested in the toys in his hands). He is being retested in January at which time; they may consider doing a hearing aid trial. We are hoping that we won’t have to do a trial run at all with hearing aids, however, that being said are willing to do all that we can do to ensure Shay is reaching his optimal level of development. I guess time will tell. I look forward to the time that both Ciaran and Shay will be able to tell us themselves what in fact they hear and see....will take a lot of the educated guessing away from the equations.
From a motor perspective, Shay continues to be a bit behind – but he is pretty determined to catch up. He is commando crawling – able to pull into kneel and will play for periods of time in kneeling position. His right hamstring continues to be tight however, his left tightness has totally resolved which is amazing news! He is standing with support and taking steps with support. He is being fitting with AFO’s at the end of January which will provide some stability for him and which will hopefully help stretch out that right hamstring….
Whew……a lot to update!!!! In a nutshell – I will say it again – Ciaran and Shay are doing amazing….and as long as they continue to take steps forward on a daily basis…Cris and I will continue to be overjoyed! 2008 has taught us how important it is to celebrate the small things in life – we look forward to celebrating more of the small things in 2009...we are confident that there are great things to come!!!!