A few sides of Claire <3

My crazy Claire Ann

Pre-Op Consult

Claire has an appointment with Dr. Schmelzer this coming Wednesday to get checked out, discuss surgery plan and schedule that surgery. This is my itinerary anyhow, what he has planned may be different but I am really hoping to get her scheduled and done before the month is over. As I have previously wrote about, the holidays were dampened a tad by my own guilt. Though this is going to be her second procedure I have prepared myself for this three times now, since the last one got canceled at the last moment I had been on quite an emotional journey preparing myself for the surgery. We have had a change in career, Chris is now working for the Union Pacific Railroad so we have amazing benefits for Claire and no more run around nonsense from Medicaid. I tried to reapply and we were denied because god forbid a person work hard and get a raise, that's an entirely other subject. 

I've been wondering lately if this process ever gets any easier; planning and worrying, not knowing when it will even be! I asked the girl who answered the phone if he had any openings for surgery this month and she wouldn't even tell me if there was a chance that we could get in. I'm not asking for patient's phone numbers to try to swap them appointments lady, I just want to know a ball park figure. Jesus, just tell me yes he's booked or no he isn't booked; he may be able to squeeze you in. I obviously wasn't expecting a definite answer. 

Little things like this are what makes this process a living nightmare. For instance the lovely nurse who rode the elevator with us post-op who said, "oh, I bet you don't want anymore kids after this". Are you kidding me? You do realize you work in a CHILDREN'S HOSPITAL right? My daughter's issues are small pebbles compared to the boulders some of these brave children face. If you are talking to me like this then how are you even able to hold this type of employment?

Big things run through your mind in fleeting glances. Sometimes its hard to get passed those little things that consume you and I think I do it subconsciously to deter from the big issues. She will be taken out of my arms and into a stranger's to go to a strange place. When she wakes up there will be confusion, anger and pain. When I get to walk in to see her she will look at me once again with those eyes that scream 'why mom?!' and I will fight back the tears that are too forceful for my efforts and make themselves apparent no matter how hard I try. I will fight the urge to let guilt consume me because I need to be the rock my daughter sees me as. The rock that I forget exists. 

Sometimes it is so hard to find that rock. I will be going about my day, minding my own damn business and BAM! I am struck by this overwhelming flood of emotions and I find myself having what I like to refer to as an 'episode'. In my rational mind I know that this is all necessary and that I am there for her in all ways possible doing right by her. There's also that little voice that tries to drag me into the dark side.The side where I can wear my guilt like a comfy sweater. I don't have to be strong because in this place I am alone. I can crumble and feel my emotions instead of giving the predetermined response to an inquiry. 

I dont think that this will ever get easier. I think that as she gets older it might be easier to prepare myself because I will be more focused on preparing her and being open about discussions. At the same time I think my guilt will worsen as she becomes aware of the process. I think the only way I can fight through this is to wear that comfy sweater and embrace it. Embrace my passion about being a mother and the fact that it consumed my life and thats where my real comfort zone is, as a mother. My path is easier than some, harder than others, but its all I know and I love our journey that's showing me that hidden strength day in and day out. 

Long overdue update

Claire is going to be 2 before I know it! I can't believe how fast time flies or how much she changes and yet stays the same. Day to day her clefts are not on my mind at all. I think more about how many spills are all over my freshly cleaned floor! She was due for a surgery last summer, July or August? Anyhow, we're on medicaid and have had some crazy issues with them. Honestly, I could write an entire blog on medicaid and how terrible their system is! It got close to the holidays and my husband and I decided that we wanted to wait for them to pass before doing this procedure. Last year was great don't get me wrong but her post op care did bring daily issues along with it. I remember Xmas morning she lightly bumped her nose and she was so upset because it was still so tender. It broke my heart that she had this hindrance on her first Christmas. That being said we... Well I.. Got started back up doing the medicaid dance so we can get her next surgery booked. I am starting to get nervous about it. Not so much about the actual surgery this time more about the million appointments (hopefully this time it's not as bad) that are 4 hours away. Claire's not as car friendly anymore! Also, the after care and of course and how this will feel to her. This surgery is a soft palate fix which will help her vocal cords and in turn help her vocabulary development. We communicate really well now and she has her own crazy toddler language like most kids do. She's outgoing and fearless, always into something! Just like last time we went through surgery I have a lot of conflicting feelings. Part of me is really excited to watch her vocabulary grow and there's also a very big part of me who is very sad to say goodbye to her quirky sounds. Obviously all of her insane sounds aren't caused by her cleft but I know some are. As any good mother would I feel an enormous amount of guilt knowing that she's waited longer than the doctor wanted even though I did do some research and a lot of hospitals won't do this procedure until the child is 2 so that's taken a little guilt away. One of my very dear friends told me in the beginning of our journey that I must be Claire's advocate and do what I think is right. I would like to think that I am doing that. She's such a happy kid and I really don't feel like this has hurt her in any way. She's developing great and I wouldn't change the last 6 months for anything. We've had a lot of fun! I have learned that no matter how hard we try as parents there will be mistakes and there's no such thing as a perfect parent. Though I am fairly sure there is a perfect child & I got her ;)