Although I know what is to come (we have already had a taste), although I know my eyes will be red and swollen from crying, although I know I will not be able to sleep, I really cannot wait for Cathal to have his heart operation. I just want it behind us. The worry, the fear and the tears will all be worth it to get our lives back on track. It feels as though time has stood still, and all I am doing is waiting.
There is no date yet for the operation, all we know is that it should be around March, when Cathal is a year old. We will see his cardiologist (I really must learn how to spell that word) in about a weeks time, so maybe then we might be able to pry some information out of him. Until then, all we can do is wait and wait and wait....
I don't want to bring Cathal on holidays outside the country in case he doesn't have enough oxygen on the flight, or the cabin loses pressure. I don't want to bring him to a hot country, in case he gets too hot and too sweaty causing him to dehydrate, which could cause his shunt to clot. I don't want to be in a country where I don't speak the language and he might have to go to hospital. All these things play on my mind. It's much safer to stay at home, a 5 minute drive from Crumlin Hospital. What can I say, I'm a little paranoid about his heart. I think I have a right to be though, in all fairness!!!
So, what can I say, I'm looking forward to having my little boy, all patched up and ready to fight the world. The sooner the operation, the sooner that can happen.
For the moment though, Cathal is just happy to bake cakes and play computer games.
hmmm, orange and apple pie!!
staying up late to help out on a raid in WoW
9 comments:
Stay strong there S. I know that's not easy with it being so far up the road and always looming, but you're quite obviously amazing parents and completely adoring your little man. With such positivity all around him he'll be fine, and the sacrifices you are making now won't feel like anything at all hen you're all off to France to see the Frenchies. I know the comfort we get from having Temple Street five mins away too, all too well, but that will pass as our men come into their own. And they will.
So you're a mammal Cathal's Mam, you want to nuture and keep your young close. And do everything you can to protect and ensure his survival. That's what we do. I want it to be over and done and safe for you too. Sending you love and good good wishes.
xx
The wait is hard on all of us. It’s like a dark cloud overhead, it would be easier if it burst and be done. A lot of people regularly ask me: “How is Cathal doing? When is the next surgery? Any update?” Their concern is nice, but I just wish I was not reminded so often…
My answer usually is: “No update, we don’t really know. In the meantime, I enjoy Cathal as much as I can”. And I do!
And think of all the fun he will have once he can go to France. I know that Gaétan – Cathal’s Mammy own 1st cousin, who is only 8 months older than Cathal! – is planning plenty of mischief for both of them…
All I can say is I am meeting *sooo* many people who have gone through this difficult operation (even just this very evening I met two such parents at a DS related event) and all had very positive outcomes. We are all with you guys and your doing a *fab* job so far so continue to be strong.
Look at how far uv come..that big man of urs has loads of fight in him and I have no doubt he will sail through his next op. We are all here behind you..it's just not nice having it hang over you, but it will pass..take care xxx
Thanks guys for the support. It's a bit of a cloud hanging over our heads, but it will clear up soon, unlike this rain that will never end!!!!
Please try to stay strong and like your Nan P said let us just enjoy one day at the time. I know I sound a bit of harsh. We all have the feeling sometimes that they will fix everything and it will be all done and dusted when it is over. But did you know the best doctor Cathal has got is you.. not the others, and he got you for the rest of his life- That is the real blessing..Keep your head up S.
Je crois en effet que l'on a tous hâte que cette opération ait lieu. ainsi vous pourrez "passer à autre chose" : que la mécanique du cœur soit réparée pour se consacrer à l'amour de ce petit cœur sans crainte du lendemain. En puis nous , les frenchi, on a très envi de faire plein de choses avec Cathal en France; Gaétan attend de pouvoir jouer et partager des aventures, mais aussi des bêtises avec le petit prince.
Ce qui va aider Cathal à passer cette nouvelle expérience chirurgicale avec succès, c'est les talents du chirurgien mais aussi l'amour de ses proches, l'énergie que nous lui transmettrons, et notre soutien aux parents et tonton, tata, nanny, de prêt ou de loin.
bisous
dom
Hello from California, I found your blog through your mom. Cathal is just adorable!
I understand about being paranoid about his heart. It's the momma bear in you. I felt that way too. In fact sometimes I have thought dealing with a heart condition is harder even than the Ds diagnosis because it is so unpredictable. My son, Reid, had open heart surgery when he was almost 8 months old, and he is doing great now...with a beautiful little scar on his chest that I am sure he will love to show off at "show and tell" at school when he gets bigger.
If they can wait until he is closer to a year, as you had mentioned in your post, and he can continue to get stronger and bigger as well as his heart get bigger...all the better for him and the success of the surgery...though I know it is hard to wait. We needed to do it at around 8 months and because his heart was so tiny, a few places were either not stitched all the way or as he got bigger another hole appeared. At any rate we may be looking at the possibility of a 2nd surgery. We see the cardiologist on Thursday to determine this. I say all this to say that waiting is actually good, just hard on you and your family. If you have any questions or want to bounce anything off of me, feel free to email tlcforeman@verizon.net
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