It never ceases to amaze me how little things can trigger emotions and reactions. There you are, going along nicely, not thinking much about much, dealing with everyday life. Then a conversation, or a few words read, or seeing a photo, and Wallop! You are thrown back to a place that is not so warm and cosy.
This has happened to me this week. It all started on Monday with a conversation regarding Cathal’s next heart surgery – a.k.a. The Big One – and the latest news from the cardiologist. Old forgotten fears rose through me during this little chat, and when I say “old” fears, I mean those experienced only 5 or 6 months ago. They were accompanied by an inner nervousness that I had not felt since Cathal came home after his first surgery. This was a sharp reminder of what is to come. I know this is going to be part of our family’s life for the next few years, but logic does not come into play when your feelings decide to wake up and engage each other in an inner rugby match.
Then I got confirmation that I was accepted as a member of the DS Ireland Forum. So went in, said hello, and then started to browse through the posts and comments. The “Brags” section is the one that ambushed me. Don’t misunderstand me here, I am the first one to talk about Cathal’s prowesses. You know the way, when you have friends who just had a new baby, and ALL their conversations are about their new child? Nothing else matters anymore. Then you have your own child and, though you swore NEVER to turn into one of those “baby-junkies”, hey presto, you ARE one! All communications consumed with baby-talk! Well, let me tell you something: in the last 6 months, I have gone through this transformation for the third time in my entire life. Ask any of my friends, or work colleagues, people I meet on a regular basis. I talk about almost nothing else but “Cathal-related-topics”. It’s just Nuts!
So looking at the “Brags” section on the DSI forum was a natural thing for me to do. I brag about Cathal and I have discovered that I love hearing (or reading) others bragging about the child in their life. But I became very sad while reading these, even a little weepy.
My rational (I can even call it Cartesian – after all, this is what was instilled into me at birth) thinking took over in the form of “… What the hell?”
“What” is happening is simply called grieving. For a long time, I thought that grieving was simply for people we had lost along life’s path. At some stage, I discovered that grieving also exists in relation to the loss of relationships. Then I learned that it can also be in relation to the loss what we never had – a life we hoped for, a life we “thought” we had (I painfully learned that this last aspect if very potent).
After Cathal’s birth and diagnostic, I went through this grieving process. The sadness at time was almost unbearable: sadness for him, and what he was going to miss out on. Sadness for his parents, and the fact they were being deprived of a “normal” child, with all the “normal” pleasures of bringing him up. I know this is just over simplistic, but I make no apologies for it. This is the way I felt in those early days.
The night following Cathal’s birth, I was talking to my sister in France, explaining about him having DS, and his heart condition (as we knew it at the time, very sketchy in those first hours). I was crying my eyes out, and all I could say in the end was: “We are going to have to love him even more, to love him so much”. As if this could make up for anything!
I know that grieving is a normal process, even necessary. It helps the transition between what we had (or thought we had) and what we now have. And then it passes, and we get on with things, in the here and now. But every so often it comes back, when you don’t expect it, and tugs at you. As if to say: “Hey! Don’t forget your hopes and dreams. Put things into context.”
This little ambush reoccurs almost every time I see or hear about the exploit of a child with DS. These kids just pull at my heart. I get all weepy.
But most importantly I find myself feeling so much love, not only for Cathal, but for all the children I read or hear about (my contacts have been restricted to children so far… it’s a fast learning curve, give me a chance, I’ll get to the teenagers and adults soon, I am sure). It’s as if something in me has been liberated… strange!
I also find myself feeling a lot of gratitude. For having been pointed in this direction that I had barely heard about only 6 months ago. For having been invited to a place of such beauty and pride.
This is what I have felt in the last week. A little bit weepy.
And how was Your week?
This has happened to me this week. It all started on Monday with a conversation regarding Cathal’s next heart surgery – a.k.a. The Big One – and the latest news from the cardiologist. Old forgotten fears rose through me during this little chat, and when I say “old” fears, I mean those experienced only 5 or 6 months ago. They were accompanied by an inner nervousness that I had not felt since Cathal came home after his first surgery. This was a sharp reminder of what is to come. I know this is going to be part of our family’s life for the next few years, but logic does not come into play when your feelings decide to wake up and engage each other in an inner rugby match.
Then I got confirmation that I was accepted as a member of the DS Ireland Forum. So went in, said hello, and then started to browse through the posts and comments. The “Brags” section is the one that ambushed me. Don’t misunderstand me here, I am the first one to talk about Cathal’s prowesses. You know the way, when you have friends who just had a new baby, and ALL their conversations are about their new child? Nothing else matters anymore. Then you have your own child and, though you swore NEVER to turn into one of those “baby-junkies”, hey presto, you ARE one! All communications consumed with baby-talk! Well, let me tell you something: in the last 6 months, I have gone through this transformation for the third time in my entire life. Ask any of my friends, or work colleagues, people I meet on a regular basis. I talk about almost nothing else but “Cathal-related-topics”. It’s just Nuts!
So looking at the “Brags” section on the DSI forum was a natural thing for me to do. I brag about Cathal and I have discovered that I love hearing (or reading) others bragging about the child in their life. But I became very sad while reading these, even a little weepy.
My rational (I can even call it Cartesian – after all, this is what was instilled into me at birth) thinking took over in the form of “… What the hell?”
“What” is happening is simply called grieving. For a long time, I thought that grieving was simply for people we had lost along life’s path. At some stage, I discovered that grieving also exists in relation to the loss of relationships. Then I learned that it can also be in relation to the loss what we never had – a life we hoped for, a life we “thought” we had (I painfully learned that this last aspect if very potent).
After Cathal’s birth and diagnostic, I went through this grieving process. The sadness at time was almost unbearable: sadness for him, and what he was going to miss out on. Sadness for his parents, and the fact they were being deprived of a “normal” child, with all the “normal” pleasures of bringing him up. I know this is just over simplistic, but I make no apologies for it. This is the way I felt in those early days.
The night following Cathal’s birth, I was talking to my sister in France, explaining about him having DS, and his heart condition (as we knew it at the time, very sketchy in those first hours). I was crying my eyes out, and all I could say in the end was: “We are going to have to love him even more, to love him so much”. As if this could make up for anything!
I know that grieving is a normal process, even necessary. It helps the transition between what we had (or thought we had) and what we now have. And then it passes, and we get on with things, in the here and now. But every so often it comes back, when you don’t expect it, and tugs at you. As if to say: “Hey! Don’t forget your hopes and dreams. Put things into context.”
This little ambush reoccurs almost every time I see or hear about the exploit of a child with DS. These kids just pull at my heart. I get all weepy.
But most importantly I find myself feeling so much love, not only for Cathal, but for all the children I read or hear about (my contacts have been restricted to children so far… it’s a fast learning curve, give me a chance, I’ll get to the teenagers and adults soon, I am sure). It’s as if something in me has been liberated… strange!
I also find myself feeling a lot of gratitude. For having been pointed in this direction that I had barely heard about only 6 months ago. For having been invited to a place of such beauty and pride.
This is what I have felt in the last week. A little bit weepy.
And how was Your week?
3 comments:
I think that the death of one's expectations can be particularly devastating, for many reasons. They're self-destructive, often selfish, and they can (speaking from experience here) overshadow things that do happen. There were things I expected about Emma's life that I thought were dashed by this diagnosis, only to find that my original expectations weren't even close to what she can do. Learning to live with less - not lowered - expectations can be a 'freeing' experience, across the board.
The other thing I'll say is that this whole thing tends to make ones' heart grow - I still have trouble not getting weepy at the dumbest things, anymore. Call it a perk, a humanitarian side-effect. It's not a bad thing, I don't think.
I remember thinking it strange that we should grieve for our Babs, why would we grieve? he has autism..he's not dead. It made no sense...but then it does hit u...the grief is for the loss of the life you had planned for your child, the hopes and dreams gone..what do you do..well you pick yourself up, dust yourself down and go find a new dream..a better more achievable dream..and in time you come to realise that we are the lucky ones - the chosen few who get a glimpse into such a world..as elbog says we will have much bigger hearts because of it..
I cry at someone getting through on x-factor, how lame is that?? take care nan p..xx
Nan, I am glad to read that you have given yourself permission to grieve. You are right, there is a generation still alive today, that remembers a time when not all the children born to a family would survive infancy. So there is a spirit memory there that values survival above all else.
However; we have evolved to have greater expectations, and that means that those expectations can be dashed. So yes, grieve that loss; appreciate that loss and then move on.
If you don't stop and take that step, it will make it so much harder for you going forward, and it may trip you up, when you least need it.
As for love? Love stretches.
I recommend you read "The No 1 Ladies Detective Agency" By Alexander McCall Smith. In these books Precious Ramotswe visits the matron of the orphan farm whose solution to all child related problems is "More Love". You can always give more love; and it will help, It always does.
xx
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