OUR NEW NORMAL

Adjusting to our new life was rough for a while. Not only were we adjusting from going to one child to two (one of which wasn’t potty trained yet-that’s enough stories for a whole separate blog), we were also trying to absorb all the information I was finding on the Internet. Mike and I were also fighting ALOT. His adjustment to children in general is a little rougher than mine and I cant really blame him, as frustrating as it is. I come from a large family, 6 sisters and 4 brothers, while Mike only has a sister. Were from two separate worlds. Quite literally actually. He was born in the Philippines and I was born here in good old Levittown, Pennsylvania. We both adjust differently and I would say he doesn’t adjust as quickly or as smooth as I do. On top of just the normal adjustments of two children, we were fighting about Owen. He was still trying to tell me we didn’t know if Owen actually had Beckwith-Wiedemann Syndrome. He made me so angry with that. I wanted him to come to terms with it so we could try and cope together. But how could that happen if he was still believing Owen didn’t have it? To say our marriage was tested this past year would be an absolute understatement. I remember constantly looking at Owen’s tongue and obsessing about it and when I would bring it up to Mike I could hear the irritation in his voice. He would tell me it was fine and that I needed to stop worrying about it. I tried to stifle the anger I felt but I couldn’t. I was exhausted. We had a 3 year old at the time, a now 1 week old, and I felt like my life was so chaotic. Nothing made sense. Nothing was as I pictured. Anger. Anger is what I felt for weeks. Anger at my husband. Anger at the world. And anger at God. I think I was the most angry with him. I kept thinking why? And I can’t tell you how many times people kept telling me God doesn’t give you anything you cant handle. I used to use that saying and over the next few weeks I grew to HATE it.

The one amazing thing that was able to break up my anger was watching the bond grow between Michael and Owen. It melted my heart. Owen was Michael’s perfect little brother. Michael loved him so much from the second he came home. All he wanted to do was hold him. He even wanted to be like him. He would stick his tongue out while he was next to him and ask me to take a picture. The love I saw in Michael’s eyes for his brother gave me hope that other people would hopefully view Owen in the same light. The world is terrifying for your children. Let alone a child that has special needs or physical differences then other children. And children are sometimes not even the worst offenders. Over the course of the 7 weeks before Owen had tongue reduction surgery strangers felt the need to always point out Owen’s tongue. As if I had no idea it hung out of his mouth all day long. Some honestly meant nothing by it, I could tell. Some would say, “Aw look hes so cute hes sticking his tongue out.” I would just smile and say, yeah he does that all the time, as I would choke back my tears. Who has the time to explain to a stranger that the reason his tongue is like that is because he has a rare syndrome? And honestly, at the time, I wasn’t quite sure I wanted to share that with people. I didn’t want to accept it even though I knew, and my husband still wasn’t accepting it because a doctor had yet to confirm it.

I wanted to keep his syndrome to myself and my family for as long as I could. I think honestly some of it was embarrassment and some was fear. I wasn’t embarrassed of my son, I was embarrassed for him. I remember specifically choosing which pictures to post on social media. I would purposely post the ones where his tongue looked the most in his mouth. I love my kids fiercely and the thought of people making fun of him or pointing out physical attributes of his hurt my heart. I remember taking Owen to the doctors office two days after we were discharged from the hospital. We were in the waiting room and his name was called. The nurse bringing him back looked at him and said, “What’s with his tongue?” Let me tell you. It took absolutely all of my self control and all of my might not to lash out at her. My husband looked at me out of the corner of his eye and gave me THE look. The look he always gives me when he knows I’m about to go Momma Bear and loose my shit. I let it go. In that instant it wasn’t worth it. I just gave her a dirty look and kept walking to the exam room. I felt sorry for her. It was in that moment that I knew that interaction was nothing compared to what we would face for the rest of his life, so I had better get even thicker skin then I already had.

We finally had an appointment with Dr. Kalish at Children’s Hospital of Philadelphia. After googling and reading, I realized she headed the whole BWS research at CHOP. That provided me with alot of comfort since we live so close to CHOP. From what I read people from all over the world bring their children to see her for BWS. When we brought Owen to his appointment I started to feel nauseous. I remember having to actually hand him to my husband because I physically felt ill. At the time I thought it was something I ate but now that I look back on it I think it was because I knew that this was the day we would get our confirmation. This was the day Owen would have his label. That he is a BWS baby. That he is a syndrome baby. I almost didn’t make it through his whole appointment. It is crazy what having children does to you. I’d like to think I am pretty tough and can handle many things. I get called in for work for emergency heart attacks for God sakes and not even that stresses me out or shakes me. My children? Their my Achilles heel. While meeting with Dr. Kalish she told us there are two ways to confirm that Owen has BWS. One way is by the physical signs and one is from genetic blood work which would take a few weeks. She explained to us, however, that the blood work could come back negative and he could still have BWS. This happens because BWS doesn’t affect every area of the child’s body. So testing the blood can sometimes come back negative. Yet if you test an area that is affected, such as Owen’s tongue, it will come back positive. Because of this, she told me that if children exhibit a specific amount of the physical signs, then they get diagnosed off that. She took one look at Owen and gave my husband the confirmation he needed and the confirmation I knew was coming. She took all sorts of measurements of Owen. She said that every time Owen sees her and her team in the office they will repeat the measurements to keep an eye on how he is growing. She then gave me a book made by a woman who has BWS that helped explain how this happened to Owen. She also gave me a ton of paperwork that listed all of the specialists he needed to see. Plastic surgeon for his tongue, oncologist for the cancer risk, pulmonologist for sleep studies, orthopedists for his leg discrepancy, cardiologist for an EKG and echo, early intervention for physical therapy, occupational therapy, and speech therapy. I thought I was overwhelmed before? I thought I was angry before? Could I please go back to before we came to this appointment? No wonder I felt ill and ready to vomit. She also explained that every three months Owen needs to come to CHOP and have an abdominal ultrasound and blood drawn to make sure there are no cancerous tumors growing. These ultrasounds needed to continue until he turned 8 and the bloodwork until he turns 4. Babies with BWS have an increased risk of childhood cancers such as kidney cancer and liver cancer. She explained that once we got the genetic blood testing done we would know what type of BWS Owen has and we would have a better idea of what his cancer risk is.

I still couldn’t accept the cancer word. I didn’t want to. And I still don’t. I left that appointment defeated. I thought getting the official diagnosis that I knew was coming would provide me some kind of comfort. What the hell was I thinking? No wonder my husband stayed in denial the past few weeks. Why the hell did I decide to accept it ahead of time. I could have had two weeks of comfort like he had telling myself Owen didn’t have this syndrome. There was that anger again. I cried and cried on the drive home. My heart literally felt like it was breaking. All of this was out of my control and I hated every single second of it. This was our new normal and it wasn’t going to change. I needed to accept it and be strong for our son. I made up my mind on the drive home from that appointment that I would be as strong as I could for him because I knew he was going to need me to be. This wasn’t about me or my feelings anymore. This was about him. This is the life he was dealt. It now became my mission to make it the best possible life he could have. This was going to be the only normal he knew so it would now be ours to.

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