Step 2: Acceptance

Hahahah....yea right, I'm pretty sure step 2 is not acceptance...but I don't think I am consistent enough to go through all 12 steps...or however many there are! I titled this post acceptance because I think that is where I am right now. I think that after the heartbreaking news I received last week about Cam's heart that I was in such pain and anger that I would have called that step, THE I HATE EVERYTHING STEP. I pretty much did. I hated that God kept piling on more and more, I hated everyone that didn't know how I felt, I hated myself for hating everyone. I felt alone, and scared, and did I mention alone? I still feel alot of those feelings, but now I am able to deal with them a little more appropriately. Last week if I saw a commercial that might have contained a small sad moment I was in tears. Usually not the way I handle things. Crying is not really my way. But last week I'm pretty sure I could have filled the bathtub with my sobbing.

This week I'm still angry, still confused, and still very scared. However, I'm also able to look beyond and see that this is just another step in Camerons journey. Another hump that we will have to overcome. I hate that he is the one actually having to go through this process, but we are his support, and I need to be that for him. If I'm always wailing "why me?" then I won't make for a very good support. He needs me to be strong and brave. He needs me to be there and hold his hand and smile when he can't. He needs me to sing to him, so that he knows I'm there, and if I'm off in the corner somewhere crying and cowarding away then how can I be what he needs me to be? So right now I am accepting that Cameron is just that....Cameron. He comes with alot of different needs, and is quite the complicated child. But he is my child and so I owe him everything he needs.

This stupid heart surgery scares me to death. It scares me the most because I don't like the idea of them actually stopping his heart. Even though it's for a brief period, when they work on someones heart they use a bypass machine so they can stop the heart and so that it is still while they repair whatever it is they are repairing. I don't like that. It also scares me because this isn't part of the deal. Cameron has Apert Syndrome. He needed head surgery, hand surgery, foot surgery. NOT HEART SURGERY. I don't think one should have to have EVERYTHING on their child surgically altered. So far the only part of Cam's body that will possibly be spared of surgical intervention will be his elbow. I'M NOT EXAGGERATING. This seems too much. Too much for one small, precious child. So yes I'm scared. VERY, VERY SCARED. The good thing is .....Cam is not scared. Nope. Instead he is beautiful, sweet, and has no clue that once again he will have a major surgery to repair he most precious heart. But then he will wake up, and that is when he will need me. He will need me to tell him how strong and brave he is. He will need me to rub his little arm and his Rosy little cheeks. He will need me to accept that this is his journey and this is just how it is.

So I accept. I accept this life that God has chosen for us. I accept that Cameron is going to send me to an early grave from worrying so much. I accept that alot of my life is going to be spent making sure that when he comes out of surgery that I'm there being his mommy, and singing his favorite songs. I accept. I'm not sure that this will always be how I feel. I'm sure that my heart can only "accept" so much. But for this moment....for this surgery....for Cameron, and for my sanity I'm trying to accept that this is our life. This is our most beautiful, wonderful, and crazy life. I ACCEPT!

Fighting with God

So today I have had a few choice words with my creator. I took Cameron to a routine Echo today for his silly heart issue. He gets an echo every 6 months to make sure it stays stable. He technically wasn't due for this echo until October, but since we had his hand surgery coming up at the end of the month we wanted to get it over with before he was all casted up and uncomfortable. Anyway, this morning we drove to the outpatient cardiology clinic, had his echo, waited for about 20 mins in the room for the Dr...thinking I would be going home and still somewhat stress free about his heart issue.....NOT THE CASE!! Cameron has something called Sub-aortic Stenosis. It's where a part of the artery under the mitral valve becomes thick and it causes a narrowing in the space where blood flows from the right side of the heart to the left. In aortic stenosis this narrowing causes decreased blood flow. Sometimes it's very minor and only requires monitoring for at least a few years, and then is corrected with surgery when it gets to a certain point. Cam has reached that point. I was told at his last echo to plan on this coming somewhere between two and three.....NOT NOW.

Honestly I feel numb. When the Dr. told me that it was worse and he would need to have surgery within the next couple of months, I cried....but then I became numb. It was like I was on auto pilot. I got the information I needed, and left. I realized I was upset when I ended up in Charlotte, simply because I just started driving in the wrong direction and didn't stop until I realized it was going to be a really really long ride home if Cam wakes up and wants to eat. I got home, I called Paul, I called my parents, then I sat down and had one of the most volatile conversations with God that I can remember. I questioned, I yelled, I said bad words, and I told God he was making it really hard for me to love him. And that is how I feel right now. I feel like God is forsaking me, and even though my mind knows that he is all loving and the ultimate healer, my heart says that my most precious baby is having to go through too much and it needs to stop.

So for now Cam's hand surgery has been cancelled yet again. We will hopefully be scheduling this heart surgery for some time in the near future, and my faith is wearing extremely thin. I feel like I keep lecturing myself about God's mighty power, and how this is all a part of his wonderful, beautiful plan. Well right now his beautiful, wonderful plan is looking pretty SHITTY!!!! I feel like God keeps letting me down...like seriously what do I have to do to prove that I'm in this...You gave me Cam...I embraced him...I have even learned from this experience about unconditional love....TRUE LOVE.....then you throw some curve balls in their...extra bonuses....couple of extra surgeries...and illnesses.....I still follow you...I pray to you, and trust in your ultimate all knowing greatness....and in turn...This....another horrible thing. When does it end? When I no longer have any faith? I know things could be worse...I know others suffer much more sadness, much more pain. But now that it has been happening to us, I'm not sure why it's still considered part of God's plan. I'm just confused. Scared and confused, and angry.

Please say an extra prayer for our sweet Cam. Pray for his precious heart, and if you don't mind throw a couple extra ones in their for me because I'm having a hard time praying right now.

Craniofacial awareness month!

So September is Craniofacial Awareness month. Last September, we were still in the hospital with Cam but he was getting better and we were trying to prepare for coming home. I do remember one of my mom friends whose little girl has aperts telling me about Craniofacial Awareness month, and how they would send me some bracelets so that I could hand them out to family and friends. I also remember at that time thinking all I want to do is get my baby home and try to grasp some sort of normalcy in my life. I remember wanting to get home and hide. Not really because Cam looked different, but because in the NICU I really didn't have to explain Cam to anyone, everyone there also had a sick baby, but coming back to reality meant that everyone Else's babies were fine and mine wasn't. So in a sense I started realizing how much that I may miss the NICU. When we did get home and get into somewhat of a routine I of course couldn't wait to take Cam places....but at first it was only to the places where people already knew about him.

I distinctly remember the first trip we took to Walmart. I kept a blanket on him and in his car seat because even though I wasn't embarrassed of my sweet baby I was embarrassed of the stares. I didn't know how to handle them at first. I didn't know if people were looking and thinking...hmmm wonder what that sweet baby has? or if they were thinking that mother must have done something for him to be like that...or she must have passed something to him. All of them made me feel weak. Like I couldn't possibly be a good mother because I was ashamed of my baby....Well it passed quick. Soon enough I didn't care what people thought, I loved Cam so much that it didn't matter. But I do appreciate those that don't just stare weirdly at us, but instead ask us....hey what is going on with your kid? anything but rude staring...I hate that.

So now I have a whole new appreciation for this month. I appreciate that there are people everywhere that look different. Honestly...I come across perfectly normal...non-syndromic people that look a little different from time to time....what I have learned is that judging others on looks is cruel. It doesn't serve a purpose, and until we know someone we can't make judgments on their looks unless we choose to be shallow people. I understand that Cameron will forever have people question his deference, but it's my hope that through Craniofacial Awareness that we spread the importance of acceptance and understanding. Cameron has changed my life in so many ways, but one of the best ways has been in my own selfishness. I have learned how to accept others difference's and more importantly I have learned to never judge someone based on their looks. I feel so blessed that I have Cam to continually remind me of the important things in life. So I encourage everyone to think about the way they judge others, and how they stare when someone looks different. Because like our motto says behind every face is a heart, and that is such a powerful statement that I'm glad to be a part of this crusade to inform people of difference!!