Wednesday, October 28, 2009

Once again..

I am a total blog slacker.

GAWD I have been b.u.s.y.

Towards the end of September, we really swung into high gear trying to get the house ready for the boys 1st birthday party. That meant painting and organizing and shopping and planning. And in the end, we only got two rooms out of the 4 we wanted done. And we didn't even get to the hall either.

I was also getting ready to sell in the my first mom to mom sale. I only made about $400. That was a big disappointment to me and I won't sell in that sale again. It was SO much work getting ready for it, but on the up side.. Melissa and I got out of our houses for some adult time!

Then there was the BIG party!! OH BOY. My boys are 1!! I lived through it and I can't believe it! Of course they were all sick for the big day and there was some drama leading up to it with certain family members. But that's pretty much typical in the Johnson/LaLonde families. And the weather did NOT cooperate. We had planned to have it outside in a big tent, but it was way to cold. I was soooo nervous about having that many people in my house. But, in the end, it all went beautifully! We had about 60 people with the kids and my house held up fabulously. I had SO much food. After it was over I was like.. did anyone eat? LOL There were so many wonderful things about the day. The boys were amazing and LOVED their smash cakes. My best friend in the world drove 7 hours to be here with her 4 kids, as did my mom and grandma. All of Jeff's best friends came down from Midland and Bay City. We are so honored all of these people drove for hours to help us celebrate our miracles!

And since the party, we've all been sick, there's been Halloween parties, pictures... so much going on.

But what sat me down tonight finally? I really needed a place to just write out some feelings. I hate that I most feel compelled to blog when I am upset or something has royally pissed me off. But, it is what it is. And tonight, I am just heartbroken for a friend whose baby was just diagnosed with a horrible life debilitating and threatening disease called CIPO. Chronic Intestinal Pseudo Obstruction.
CIPO is also very rare.. affecting like 1 out of like a million children.

The friend is a 'virtual' friend who I know through a chat board of women with multiples. It's an amazing group of girls and I've become so attached to them. And sadly, this is the second baby in our group that has been diagnosed with this condition this year. I've talked to a couple friends in the medical field and they can't believe that not only have I have heard of this disease and know what it is, but that I actually know of TWO babies with it in our small group of about 100 women.

The first baby, J.. is somewhat stable now after many many hospitalizations. But still has chronic pain. His mother was a great comfort to me in the early days of my pregnancy when we thought Ben and Nate might be mono amniotic. And then again when Ben was diagnosed with reflux. J and his brother were and she was by default.. an expert in the conditions and now, she is an expert on CIPO. She is remarkable. I think of her and her family every hour or every day. When J was finally diagnosed back in May, I was MIA due to the move, boys being sick, losing my job.. all that shit. I really feel a huge pit of guilt for not being there to be more supportive. If only thoughts and prayers were enough. Thank goodness J is stable right now, but many many tests and a very long road is still ahead for him.

And now.. poor baby G has been diagnosed with CIPO. And he is very.. well.. not stable. In fact, it's been one thing after another for this poor child and his family. When I read his mother's most recent post this afternoon, I literally lost it at my desk and had to go for a walk. Baby G has the sweetest face you could imagine and I can't bare to look at it knowing how sick he is.

I've had to ask myself tonight.. why am I so upset by this? I don't know this child or his mother other than over the computer. I think I have concluded that A) I am also the mother of young boys only a couple months older than G and a couple months younger than J. B) It's human nature to feel bad for a sick baby C) Having dealt with Ben's awful reflux and the hospitalization of all three of my boys at the same time last winter and knowing how upset and scary both of those situations were to me and my husband, I just can NOT fathom escalating those circumstances to what these mothers are dealing with.

It takes my breath away and knocks me on my knees. It makes me very angry with the powers that be. How can these babies be suffering so? How? Why?

I don't consider myself particularly religious. Although, I am catholic, did attend church regularly and probably will again when I can.. I consider myself more spiritual. Since this has all started with baby G, I find myself praying non stop for him. Several times a day.

So.. if you read this and you pray.. or you talk to some other higher power not of this earth.. pray for baby G and baby J. They need all the help they can get right now.