Being the parent of a child who is both medically fragile and has special needs, it is sometimes really hard to see the silver lining in life. While some days things are great and you can smile and laugh and almost feel like a normal person, other days you just fall into a well of confused self deprecation where it seems there is no end in sight to the monotony and drudgery that has become your life.
It makes it all the harder when you are constantly seeing reminders of the life that you're missing out on... family and friends with their 'normal' children who are running and babbling and playing... and it really drives into your heart that your child is just not the same as other children.
Last Friday for instance... I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.
Given their close proximity in age it's only natural that the children are all friends and play well together... that is, all except Nicola.
Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn't even sit unaided. She doesn't talk, she doesn't walk, she doesn't run... and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.
Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.
Don't get me wrong, I don't begrudge their happiness with their healthy children. Not at all! And while I wouldn't give Nicola up for anything in the world or change anything about her, I wouldn't wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.
But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us... just when we need it most.
About a month ago we had a massive breakthrough in her communication... she looked at me and she said "Mum. Mum, Mum, Mum." Of course, to say I was ecstatic was the understatement of the century... until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers... and it wasn't really a word at all.
One step forward, two steps back.
Sigh.
But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.
Ok, so she's almost two. I get that... waving for a two year old isn't a big deal...
But for MY two year old, it's a mammoth step! It's phenomenal! It's more of an achievement than man's first steps on the moon or the discovery of the theory of relativity.
MY two year old daughter waved! She picked up her hand and waved! She communicated with me!
Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.
Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.
She responded to my waving to her by signing 'good waving' to me in Makaton.
She used her finger instead of her thumb, and it wasn't entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. "Good waving Mum. I'm proud of you!"
Thursday, July 22, 2010
Saturday, July 10, 2010
In Loving Memory...
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God's Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
"PEACE BE THINE".
It broke our hearts to lose you, but you didn't go alone,
For parts of us went with you the day God called you home.
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
In Loving Memory of Willa Clementine Hunt
An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.
09-07-2010
Rest In Peace Princess
xxooxx
God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God's Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
"PEACE BE THINE".
It broke our hearts to lose you, but you didn't go alone,
For parts of us went with you the day God called you home.
*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*
In Loving Memory of Willa Clementine Hunt
An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.
09-07-2010
Rest In Peace Princess
xxooxx
Sunday, July 4, 2010
Take This Moment...
Ok, so, again, I am just soooo not good at keeping on top of a blog. I think I have to accept the fact that I will never be one of those people who write something here every day. We have had so much happening of late... the last month or so has just been utterly chaotic.. but I will talk more about that later... maybe.
Right now, I want to talk about a friend.
This friend probably isn't what a lot of people would consider a friend. I have never stood in the same room as her, nor have I heard the sound of her voice. I have never held her hand or hugged her, I don't know what sports she follows or what music she listens to, but we share a common ground that is so deeply entrenched in our hearts and souls that none of that seems to be very important.
We both have daughters that are HRAS positive.
Our precious daughters are almost the same age, they even share some of the same traits... the same gorgeous smile, the same big eyes and the same sunny outlook on life... but that's about where the similarities in our lives end.
Tonight, as I watch my daughter sleeping in her bed and reflect on how far we have come and how far we have to go, my friend is watching her daughter sleeping and reflecting on the fact that her life is nearing an end.
You see, my friend's beautiful, precious little girl has cancer that cannot be treated and they have made the heart wrenching decision to let nature take it's course.
I cannot even begin to fathom the immensity of this decision, or the emotions that they struggle with on a daily, or even hourly basis, yet she does it with poise and grace. I read her emails and I cannot help but cry because even now, in her deepest hour of need, she is not only a friend, but a teacher, using her own pain to help guide others on this journey.
And with such a good and gracious person as a teacher, how can I not be a student?
Indeed, from her words, I have learned a great many things, some of which I already knew that have been reinforced in my heart, and some which are new words of wisdom that I am holding fast to.
I have been reminded that every moment is precious. We never know that is just around the corner. It is time now to hug my children, play with them, make them smile, make them laugh. Revel in the joyousness that is the foundation of new life, spend time with my partner and just delight in the little things that make us both smile.
I have learned to appreciate therapy and medications and doctors visits and all of the other stuff that comes with this life that I have had thrust upon me, for even though I may curse these things for being the bane of my existance on a day to day basis, but each time I curse these things I am also reminded that I have her in my life. I may despise therapy, but every day we do it is another day that I still have my daughter.
I have learned that even in the face of adversity that may seem impossible to overcome, I will find a way to get through. I have the strength and courage of a family with wisdom that spans half a century and encompasses the face of the globe, all of whom will be standing with me when I need them.
Nicola and her medical complexity may have turned my life inside out and upside down, and it may have challenged everything I ever thought I knew in my life, but it has also brought me friends and family who have become an important part of my life.
I may not see them every day, or even every other month. I am lucky if I see some of them every other year. I may not know their faces or hear their voices, but they are still in my thoughts every day. I laugh with them in their moments of happiness and I cry with them in their moments of pain, but most of all, I am just thankful that I have them as friends.
Now... with that, I have three sleeping children, medication has been given and feeds are up to date... so I am going to go and enjoy a few moments of precious sanity, savour a nice warm shower in this faux winter and then curl up in bed with a good movie and enjoy some nice spacious sprawl time before all of my off spring end up in my bed, which will be in about two hours and thirty seven minutes, give or take a few seconds.
But I leave you with this...
Take this moment and own it. Cuddle your children, kiss your partner, eat that piece of chocolate, and revel in the small things... don't take a single moment forgranted, because you never know what tomorrow will bring.
<3
Right now, I want to talk about a friend.
This friend probably isn't what a lot of people would consider a friend. I have never stood in the same room as her, nor have I heard the sound of her voice. I have never held her hand or hugged her, I don't know what sports she follows or what music she listens to, but we share a common ground that is so deeply entrenched in our hearts and souls that none of that seems to be very important.
We both have daughters that are HRAS positive.
Our precious daughters are almost the same age, they even share some of the same traits... the same gorgeous smile, the same big eyes and the same sunny outlook on life... but that's about where the similarities in our lives end.
Tonight, as I watch my daughter sleeping in her bed and reflect on how far we have come and how far we have to go, my friend is watching her daughter sleeping and reflecting on the fact that her life is nearing an end.
You see, my friend's beautiful, precious little girl has cancer that cannot be treated and they have made the heart wrenching decision to let nature take it's course.
I cannot even begin to fathom the immensity of this decision, or the emotions that they struggle with on a daily, or even hourly basis, yet she does it with poise and grace. I read her emails and I cannot help but cry because even now, in her deepest hour of need, she is not only a friend, but a teacher, using her own pain to help guide others on this journey.
And with such a good and gracious person as a teacher, how can I not be a student?
Indeed, from her words, I have learned a great many things, some of which I already knew that have been reinforced in my heart, and some which are new words of wisdom that I am holding fast to.
I have been reminded that every moment is precious. We never know that is just around the corner. It is time now to hug my children, play with them, make them smile, make them laugh. Revel in the joyousness that is the foundation of new life, spend time with my partner and just delight in the little things that make us both smile.
I have learned to appreciate therapy and medications and doctors visits and all of the other stuff that comes with this life that I have had thrust upon me, for even though I may curse these things for being the bane of my existance on a day to day basis, but each time I curse these things I am also reminded that I have her in my life. I may despise therapy, but every day we do it is another day that I still have my daughter.
I have learned that even in the face of adversity that may seem impossible to overcome, I will find a way to get through. I have the strength and courage of a family with wisdom that spans half a century and encompasses the face of the globe, all of whom will be standing with me when I need them.
Nicola and her medical complexity may have turned my life inside out and upside down, and it may have challenged everything I ever thought I knew in my life, but it has also brought me friends and family who have become an important part of my life.
I may not see them every day, or even every other month. I am lucky if I see some of them every other year. I may not know their faces or hear their voices, but they are still in my thoughts every day. I laugh with them in their moments of happiness and I cry with them in their moments of pain, but most of all, I am just thankful that I have them as friends.
Now... with that, I have three sleeping children, medication has been given and feeds are up to date... so I am going to go and enjoy a few moments of precious sanity, savour a nice warm shower in this faux winter and then curl up in bed with a good movie and enjoy some nice spacious sprawl time before all of my off spring end up in my bed, which will be in about two hours and thirty seven minutes, give or take a few seconds.
But I leave you with this...
Take this moment and own it. Cuddle your children, kiss your partner, eat that piece of chocolate, and revel in the small things... don't take a single moment forgranted, because you never know what tomorrow will bring.
<3
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