A year ago we sat in a cold beige room with a Neurologist, his assistant and a very ghetto tube TV on wheels, looking at our son’s MRI. Without muttering a word we turned and looked into each others eyes and instantly we both knew it wasn’t good. If only it was a big joke and Bill Nye the Science guy came up hooting “You’ve been framed”
Kevan grabbed my hand tight and held tight… he never let go.
We turned to the bearded professional and turned our ears up. It was all very surreal.
Those weeks in hospital were somewhat of a blur, yet I remember everything. The smell of the cologne the annoying medical student wore, the kind nurses who took such good care of us and the pediatricians that answered our endless lst of questions. I remember how incredible my mother in law was and still is. We didn’t have to ask her to change her flights, she just did. She not only looked after Georgie she was a mother to all of us when we needed her the most, and a shoulder for me to cry on….and vise versa. I remember looking over one day at the crib next to us and seeing a tiny 1 month old baby and wondering where the mother was. Day after day I listened to that baby cry and finally one night I went over to his crib and sang to him and he looked up at me and smiled. I was so heartbroken. How could a mother leave her sick new baby alone in the hospital? I wanted my 4 month old to look at me that way and smile, and here was this tiny baby full of smiles with no one there. It did not sit well with me. When that mother finally did come to pick up her baby, I know Kevan and every nurse in the ward was thankful I was asleep.
I remember telling Archie’s story over and over again and just sitting there feeling so helpless, the unknown was gut wrenching. Even though I was scared beyond belief, I knew I had to be strong for my family and in particular Archie. Every night in the hospital room I sang (as well as cried) to Archie and reminded him that he was a fighter and that he was safe and that I wouldn’t let anything hurt him again. I told him that I would be by his side the whole time cheering him on and making him smile and believing in him every step of the way…. and that I just needed a few days of tears.
I took those few days of tears. I’m sure I wasn’t the only one.
“When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. A week is more than enough time for us to decide whether or not to accept our destiny.”
Paulo Coelho, The Devil and Miss Prym
Looking back on those long nights I realize that I wasn’t reminding Archie that he was brave and strong; I was reminding my tired aged self. I could do this. We could do this. It was time for us to leave familiar ground and venture into a world that was unknown.
What an amazing journey this last year has been. Look at his wee face!!!
Archie has become such a lovely happy little boy. He has so much love to give and shows you how much he loves you with kisses, smiles and lots of banter. Watching him smile when Georgie walks into a room and hearing him yell “AYEEEE” makes my heart skip a beat every time.
Last week I watched a miracle happen. I watched my son stand in his walker with a smile on his face and walk across the room. He picked his left foot up and moved it slowly forward then the right one followed a minute later, squealing with delight he walked across the room to his sister who was cheering him on. I knew he could do it. I was so proud of my son. You couldn’t have wiped that smile off my face if you tried. No I lie, when I heard the price of the walker I merely shuttered….Archie’s first walker is more expensive than my first car!
Oh well…who cares, worth every penny. Every day I watch Archie struggle with the simplest of tasks, whether that is unclenching his fist, making a small sound, picking his head up, looking at us and for us. Tasks that come so easy to other children, Archie has to work so hard for. He wants to move so badly, we can see it in his eyes, but it is not easy for his little body to move. Archie’s cerebral palsy is a combination of hypotonic and hypertonic, and it affects his whole body. But did that stop Archie from moving…no way batman! Watching your son come to life after a full year of dedicating yourself to giving him the best chance; is without a doubt the best gift. I saw him come to life and his eyes sparkle and so did everyone else in the room. Our Physiotherapist exact words were, “I can not believe he is moving. I did not expect him to do this. I have never seen a child as young as Archie, or as severely affected physically get in a walker and move forward”.
The last week has been bitter sweet for me. It is really hard to put into words… and I’m sure there are many people who have stood in front of us and felt exactly the same way, sometimes there just aren’t the right words. A year ago today we were told Archie’s brain wasn’t growing and he was admitted into hospital. I think as a parent you always want what is best for your children. You want to make sure they are happy that they feel safe, loved, comforted, and given the best chance possible at life filled with endless opportunities. Last year I was so sad. I was sad that my son wasn’t going to get enjoy all the things he should. I was sad that the chances of him uttering the words ‘mama’ or ‘I love you’ were slim. I was petrified every time he had a seizure that he might die…well if I’m honest I’m still a little scared, I just hide it well. Thinking of what the future was going to be like scared me. I know that everything I felt was completely typical (we don’t use the word normal anymore in this house, I mean really…what is ‘normal’), but it didn’t make it any easier.
When you are told your child isn’t meeting milestones and that the chances of them meeting those milestones in the future are slim to none, there is no greater moment to see your child meet that milestone, even if it is only for a brief second.
It is a miracle. Most parents don’t see miracles every day. We are so lucky. Our daughter has taught us that it doesn’t matter if Archie doesn’t say I love you or Mama, he says it with his smile, and as Georgie says “we can get him a device mom, no biggie”. Such a smart wise daughter we have. Watch out world, she is ready to take you on.
So in ending this extremely long blog; the sadness and fear that once tugged at my heart has slowly disappeared, and I honestly couldn’t be happier or feel more complete. Archie’s diagnosis is simply that. A diagnosis. He is so so so so sooooooooo much more than that. He is cheeky, intuitive, curious, lovable and so much more. While being home the last year with my children has been incredibly challenging, it has been equally rewarding. Our life to some might seem difficult (and when there isn’t a lot of sleep going on it is) but to us it’s just a typical day J
We don’t know what the future holds for Archie and that is okay, because we don’t know what the future holds for Georgina either! But it’s today that matters; not yesterday, and not tomorrow.
Kevan and I would like to send out a special thanks to all our friends and family that have stood by us; supported us and who have shared all of Archie’s ups and downs with us. When days get tough it’s your love and support and understanding that keeps us going. It takes a village to raise a child, and it takes a whole city to raise a child with special needs. We appreciate everyone’s help and I only wish one day I could return the favors….however if Archie keeps up his night time sleep strike that most likely will never happen, so hopefully everyone will just be happy to see him overcome his challenges 🙂
A special thanks to all the wonderful inspiring children and their families we have met the last year. I feel so lucky to be apart of your families lives and am in constant admiration of the strength and courage I see in you and your children.
“If someone you love hurts, you cry a river, build a bridge, and get over it”
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