I don't know how many of you got a chance to see the latest edition of Baby on Board on RTE.
I bring it up because the similarities were uncanny. The couples son also had downs and four heart conditions (damn, he beet us with our measly 3 conditions). It was so nice to see others in the same situation, not that I would wish this on any one, but to see that we are not alone was a huge comfort. We recognised everything, the gauntlet of emotions, the door into ICU, the waiting room were you wait while your baby is in surgery, even our surgeon, Freddie (that's Prof. Freddie), was there. I did shed a few little tears, because even though we have been through a surgery, we haven't had the big one yet. It's the heart and lung machine that scares the bejesus out of me. The six hours of waiting doesn't help either. I wish we were on the other side, but we are not, and we still have to wait for the time to come. I try not to think of the upcoming surgery too much, you could start to get obsessed with it. The best thing, as with everything, is to take it one day at a time, and cherish every moment, even when all that Cathal does sometimes is scream in my ear the entire day.
Slowly, I have come to realise that we are not alone with Cathal, there is a huge community out there, and I am starting to get involved. I recently joined the Down Syndrome Ireland discussion form, and so far loads of people have said hello to me. I also sent in the application form to become a member of DSI (look at me being organised!!). Rollercoaster has been fantastic too, and it's there that Nick (Downsdad) introduced Jacob to me and sent me 'Welcome to Holland'. I realised that it was ok to grieve, and I found it easier to accept it all through Jacob's story. (Thanks Nick).
I would like to thank every one who has sent their best wishes and support over the last few months, and I hope you keep reading.
I have a feeling that I am going to meet a lot of good friends on this little journey that the three of us are on.
5 comments:
One day at a time, and frequent stops to smell the roses, taste the coffee, swat the flies, scream as necessary, punch something (as therapy, naturally!) and make that little space for oneself where it's just ok to feel guilt, self-doubt and also resentment. But above all that, Ben & Jerry's Phish Phood on the odd occasion!
Much respect to that fine lookin' young feller there. He's got a very comfy looking blog!
HI There
Delighted to see your blog.
I am Caroline Casey and am Chairperson of Down Syndrome Dublin. Welcome aboard. You can contact me at ccasey@dsdublin.ie or visit our web site www.dsdublin.ie ,if you would like to talk at any time.
Best wishes,
Caroline
Yes Cathal's Mammy, one day at a time is the only way forward, hard as it is not to think about what's ahead. I have no doubt you will get there..good on you for joining DSI..when I joined our support group I found it very therapeutic, great to be able to talk to someone who knows where you're coming from and some who are further along the road who can advise you on what lies ahead. Good luck with it but don't let it take all your time..leave some aside for keeping this blog going and keeping us up to speed on how your little beaut is doing. All the best..Sesame
I'm so glad you got to see that Missus. The media can be such a trap for newly special parents. Sometimes they over simplfy to get the message across, and underestimate the public, and sometimes they blow things out of all proportions and scare the hell out of anyone who has just heard the news. Sorry. The. News.
Telling the truth, but showing coping - that is the best way.
Congratulations to you for doing that for your readers. Sharing is Caring as my Boo says (when he is taking my dark chocolate kit kat, grr)
xx
Thank you fellow bloggers!!!! And Caroline. Hammie, Boo is dead right, sharing is caring, especially when it gets you chocolate. By the way, glad to see he's joined the blogging world
Post a Comment