Strength...

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

So there has been alot of talk about strength lately...mine, Bryan's, Sean's, Brigitte's, and Jake and Brenna's. Where do we get it? How do we do it?

I don't know the answers to either of those questions. What I do know is this. I didn't sleep at all last night. Tossing, turning, thinking. Worry, angst, control, sadness, laughter, tears....you get the picture. I went to bed early last night to get myself ready for all I have to do today. Including picking up Sean and Brigitte's medication for school, dropping off physical forms and having conversations with both school nurses about the kids, having a chat with the principal about tutoring for Sean, going to order glasses for Sean, getting a backpack for Brenna, getting Brenna a haircut, and then taking Brenna to cheer!! School starts tomorrow so there is alot to be done! Suffice to say with a normal week things would be crazy...but then there is Friday. Back to not sleeping.

I went to bed alone. Bryan was working another OT shift and wouldn't be home until midnight. Jake asked if he could come in and watch TV with me and how do you say no to that? Around 11:30 I sent him back to his bed and got myself as comfortable as I could. Bryan came home at some point because when I woke up at 3am he was there and so was Sean. Sean was cuddled up beside me as close as he could get. His head resting on my chest....soundly sleeping. I really had to go the bathroom, but it was going to wait. I needed to soak up this moment for as long as I could. What if it was the last time it ever happened? What if something goes wrong with the surgery and their are complications? All questions any parent would ask if their child was undergoing any procedure...big or small. Its just human nature. So I went back to taking in the sweet smell of lavender in his hair. Listening to his snore song. Watching his chest rise and fall. Holding him as close to me as I could. He gasped a minute and I jumped.

It was at that moment that I remembered that this isn't about me at all. This is about a 6yr old little boy who is undergoing brain surgery on Friday. I am not the strong one. He is. I am just his mom. I am just doing what I need to do to make this as easy on him as possible. We bought blankets and pillow pals. Picked out pajamas and word searches. We've got a bag ready to be packed. He is ready to do this. I am just there to pick up the pieces when he is out of surgery. To be there for him when he is scared walking to the operating room. To be there as they place a sweet strawberry scented mask over his little mouth and put him to sleep. I'll go back out to the hallway and break down with Bryan. Hug him. Beg God to keep him safe and get him back to me as the same Sean. Compose ourselves to go wait with family for the 4-5hour long procedure. Knowing the anesthesiologist is placing a tube down his throat. The residents are putting IV's and arterial lines in his little arms. While Dr. Warf makes a delicate 6-7inch incision down the back of his little neck and carefully proceeds to remove a part of his skull and brain. He will slowly wake up alone in the PACU and then they'll come and get us. Then we can begin to get him better and bring him home.

So, as I said. I am not strong. I am just his mom. Doing what every single mother out there should do for their child when they are sick and scared.

The moment....

Today I was at CHB with Brigitte for her psych appointment and for her first infusion of the new drug, Hizentra. She will get Hizentra once a week at home through two subcutaneous needles vs. getting IVIG once every three weeks via a peripheral IV. Her peripheral access is getting really bad, so we have been very lucky to get the go ahead to try this new drug.

Her appointment with Psych was at 10 and then the infusion was scheduled in the CAT/CR at 1pm. We had some time to kill in between and made our way to the cafe to check out the daily special.....lasagna or spareribs (YUCK!!!) So we headed back to Au bon Puke for some overpriced Corn Chowder and a tuna sandwich. How exciting. My mom and sister Alexis were kind enough to come with us today and served as great distractors!!

The moment came while I was standing at the soda fountain filling up my cup with diet pepsi that I swore off weeks ago. Since Sean's diagnosis, it has been my go to drink when I am not overinduldging myself with Kahlua Mudslides on the rocks. Don't Judge!!! I found myself becoming completely overwhelmed right at that very moment. It was high noon, and the place was mobbed with people. Here I am stopped dead in my tracks with tears rolling down my cheeks.

What happened? I guess what happened was that I realized my life has become Children's Hospital Boston. My sister had just made the comment "Shannon, your like famous here. You know everyone." I think it finally had sunk in that I have spent so many days living, breathing that hospital that even the staff at Au bon Pain knew me. We ran into countless nurses, doctors and friends just in our short venture from Fegan 10 to the Main Lobby, all with a ready smile and a big hello for Brigitte!! She is a face you don't forget. She is the one who always has the ability to make someones day. They love her. What made it so real today was that we happened to run into Brigitte's geneticist, Dr. Amy Roberts. We exchanged pleasantries, and then got down to the nitty gritty of Brigitte news when we both realized we were having a very intense conversation about Brigge in the middle of Au bon Pain as if it were nothing. Dr. Roberts was the first to realize "Lets have this conversation somewhere else." Me: "Are you free Friday, we'll be on the 3rd floor Surgical waiting area waiting for Sean." Her: "Perfect, when I get a break, I'll come up and we'll finish."

Seriously???? Sean is going to be laying on an OR table with his head cut open and I am going to be multi-tasking taking care of Brigitte business in the waiting room. This is our reality. I totally lost it.

I quickly composed myself, wiped my eyes with my T-shirt....and headed to the cashier. Proceeded to pay, sat down with Mom, Alexis and Brigge....got on with our day.

I guess what I am trying to get at is that emotion comes at different times. Often, inopportune times. Sometimes you have to just go with it. Let yourself have that moment. Acknowledge it and move on. For as you know, life goes on with you or without you. Whether your home and able to weep privately or standing in the middle of Au bon Pain with a tray full of corn chowder. If you don't have these moments, something is wrong with you. I have decided that these little moments are what continue to remind me that this isn't a dream, nor is it a nightmre. Its reality and we just need to make the best of it. Even if it means multi-tasking in the surgical waiting room.

Sean and his Chiari

Wow, guys!! It really has been a long time, hasn't it!! So much for me being better about this, huh?!?!?

Well another day, another diagnois. This time, another child.

We recently found out that Sean (my 6 year old) has a Type 1 Chiari Malformation. He will be undergoing major brain surgery this Friday at Children's Hospital in Boston.

Shock and disbelief do not do our feelings justice. We had just started to get ourselves on a good path, and then WHAM! Out of the blue this happens.

Bryan and I had a long conversation last night about how we are truly feeling about this. I came to the conclusion, that honestly, I just don't know how to feel. When it comes down to it, I am so angry. Angrier than I have ever been about anything that Brigitte has gone through. This in itself, is leaving me so angry. Why am I not more upset about things that Brigitte goes through? Have we just learned to deal with the fact that this is her life and none of it is such a big deal anymore? How sad is that for her? Or is it that we just have never realized the full impact all of this has on her on a daily basis because she hasn't been old enough or verbal enough to tell us how she really feels, unlike Sean?

Sean is surely telling us how he feels. He is so angry. He is so sad. He is so scared. Why shouldn't he be? He is about to endure one of the worst things in his lifetime.

My question is why does this keep happening to us? Why my kids? Does it make me a bad person to question these things? I continue to wonder what I have done that someone feels so strongly in punishing my children for something I have done. Surely, they have done nothing to deserve this. Maybe I am looking at it from the wrong angle. I know that I should be looking at it from the perspective that someone is using me to show the world how it should be done. That you can get through trials and tribulations with grace and dignity. That you should always look at things knowing it could always be worse. We are the family that comes together and just does what needs to be done whatever the days calling may be. I keep telling myself that there has got to be some wonderful thing that is going to happen to us. Maybe we'll hit the lottery? Maybe we'll be the millionth customer at Hannaford and win a years worth of free groceries? This is what I tell myself when I walk into my upstairs bathroom that still doesn't have a sink after I broke it 3 years ago with my hair dryer....I put a big hole in the porcelain. This is what I tell myself when Sean and Brigitte sneeze and cough all night because of the rugs that so desperately need replacing in our bedrooms. This is what I tell myself when Wells Fargo wants 10k for our new mortgage modification that I just don't have. This is what I tell myself when Bryan works his 3rd 16hr shift of the week and is only going to get 3 hours of sleep for the umpteenth time this month.

Then I remind myself that complaining and wishing doesn't make the present any easier to deal with. That we just have to get up another day and keep doing what we are doing. That my kids are smart, beautiful, honest, respectful, loving and more importantly, ALIVE. That we are doing a good job despite how hard we struggle. That once again we will get through this trial and be better off on the other end.

At the end of the day, it really is hard to believe in all of that. I have to though, its what keeps me going.

Pray for Sean!!!