My heart is aching today

  Not for me this time, for a friend. We just got back from some more tests in Toronto and everything was great. Today my friends Leila and Eli are taking their sweet little boy, Jakobi for his own cranio surgery. They were lucky to also live near Sickkids Hospital and blessed the same amazing plastic surgeon, Dr. Forrest. I know that everything will be fine in my heart but my head is right back to our surgery day with Fenn. The feelings I know she is feeling, the pain of watching as your baby is taken away and you just have to sit and wait... it's awful. I will be by my phone and thinking of them all day today while this is happening 18 hours away from where I live now. It is so unfair that any parent has to watch their children go through these things and that any child has to endure this. I will be anxiously awaiting the news of Jakobi getting out of surgery and getting snuggled by his mum and dad. I hope the day will pass quickly for them today. Send whatever it is you send, prayers, postive thoughts etc their way for me today please, for strength for the parents and healing for Jakobi. They are a special little family and we love them.


Fenn and Jakobi playing Sept. 2012

Here again...really?

  Everyone keeps telling me how great I'm doing considering and well, today I came to the conclusion I'm not doing ok at all. I'm sick with flu right now, feel beaten down, tired, stressed (wish there was a better word cause this seems overused) overwhelmed, discouraged amongst other things. Today I watched a movie half heartedly, wasn't really watching, but it came to a part where the family pet died and for some reason I just lost control and broke down, I cried for half an hour, I cried for banana bird, I cried for Fenn, I cried for myself and I just cried without really knowing why. I was aware I hadn't cried for a very very long time and it seemed like I just needed to. Now I am left in this weird feeling place. I wish I didn't have to worry about anything but Fenn right now, bills, groceries, getting dressed, making meals, you name it, I don't want to think about it.  I just want to be with Fenn.
  I know people just want to support us right now but its hard to accept help and it makes things feel real when I'm trying to ignore them. I feel like people think Fenn is on his deathbed or something when I see happy, playing, having fun, making us laugh almost all the time. He has come a long way since his first surgeries for sure, he's developing normal, like any normal 2 year old. I knew with his congenital defect there was a chance of things returning and possibilities of more surgeries because I'm one of those people who researches the heck of something. Over the past several months I watched moms from the support group I joined online going back with their kids after they thought they were done with these surgeries and I left the group because I just didn't want to think about it anymore. Since visiting the IWK and finding out about some other issues we didn't know where there (chiari malformation, small ventricles in his brain) now I am forced to consider more seriously what is in our future. To be honest, I just don't know. I'm trying my best to not think about it at all but its hard with all these concerned people around. It's like people are expecting bad news and I don't want to expect bad news, I want to expect a misdiagnosis or at the very least it doesn't need an operation. I can't imagine watching Fenn go through this again.
  All I know is right now I just want to be locked up in my house with no danger of seeing anyone. I realize this is unrealistic but it's how I feel. It's not personal, I just can't be forced to talk about Fenn right now, I just want to enjoy this next week and a half with my baby and with all of us as a family. Mike will be staying in Ontario to find work because he was unable to find work that could support us here, not ideal for Fenn, but it needs to be done.
 I just don't know what to say anymore, my stomach is in knots, my head hurts, I'm sad for my baby, I can't concentrate on anything right now.

Where my head is at....

  I can't stop thinking about Fenn's future, what's in it, is he done with surgeries and complications? There is no way of knowing, when people ask me, and they do often when they hear about his journey I really don't know the answer and that scares me.

  I am part of a 'support' group on facebook for cranio moms, I say 'support' group because really I think the group just makes me more nervous for the future than anything, it isn't really comforting me at all. There are so many moms on there whose kids 2-3-4- years later going back for surgeries when they thought they were finished with Cranio. When I look up photos of cranio children years post op I can still see there is something wrong with them. I can see that their heads still don't look normal and wonder how their families can't see that. Truth is I won't notice either and I doubt I have any friends or family who are going to tell me Fenn doesn't look normal. When I look at photos of him pre op I can see how odd shaped and abnormal his head was but back then I only thought there was something slightly off about the shape. Nope, it was really off, out of the situation I can see that. Maybe it's the same now, I can feel his head has a lot of bumps and ridges but I think with his hair in it's not very noticeable anymore, maybe it is?

  I don't want him to struggle in school because he looks different. If my friends and family aren't telling me you can be sure his classmates will tell him so I really hope he does look normal. Also now a mom has been posting results of a case study of a lot of cranio kids and how they are struggling in school. I feel like maybe this nightmare will never end and I will always have to remember what Fenn has gone through. He may have to go through much more and I don't like that idea at all.
 I can't believe we are still waiting for a MRI at IWK. We have been waiting since last summer. I have no way of knowing if the episodes he has been having are related to his Cranio or not. I'm just so over having to think about this, can't wait for our SickKids appt in May so I can find out if everything is ok. Feel free to give me an honest opinion on whether or not he looks normal with his head shape because I really think I can't tell. I don't think I've seen one photo of anyone else;s cranio kid that looks normal to me.