The Ties That Bind Us Can Set Us Free…or Send Us To The Beach

Our family looked forward to this beach vacation for a month. KC works so much, and we have been so busy with school, dance, therapy, and gymnastics, that a get away is exactly what we needed. Just like any new experience though, there is always a bit of anxiety. After days of packing and preparation, we were on our way.
I assumed Benjamin wouldn’t tolerate the heat too well, and I pictured him and me sitting on the balcony all weekend. No complaints here. 🙂 Benjamin had different plans. Benjamin loved the water, loved spending time with everyone, and didn’t mind the heat thanks to the cooling pad. (Cooling pad is highly recommended)
Luckily, the resort we stayed at had amenities so wonderful that we really didn’t need to visit the beach. The past trip with the girls, we didn’t even make it to the beach. This trip, I realized that sometimes I may overcompensate trying to make sure Benjamin is able to have as many new experiences as possible. I was determined to make it to the beach. We loaded up, with tupperware in tow (recommended by fellow trach mom), and hauled it to the beach. So did Benjamin love it? He loved it so much, he slept the entire time. I think it meant more to me that he made it to the beach than it did to him.
The beach vacation was flawless, enjoyable, and even a little relaxing. I realized many things that I guess I was starting to figure out…1. We’ve got this. 2. We are not missing a thing 3. Benjamin’s equipment is now a part of the family. I now realize that I don’t even consider that Benjamin’s equipment is out of the ordinary. While sitting on the deck with Benjamin, a gentleman kept asking me something while he floated the lazy river. I kept repeating “excuse me?” when my sister in law finally realized he was asking if Benjamin was ok? She smiled and replied yes, and he asked if it was asthma. She chuckled and replied “no.” I chuckled because I am so oblivious to all the equipment now that I even thought the gentleman was “hitting” on me. Thinking about the current me compared to that extremely scared mom leaving the NICU is amazing. My past fears of never leaving our home are far behind us. We haven’t allowed equipment to change our lives or slow us down. We have embraced the equipment and appreciate all that it can do for us. My nephew at 8, is amazed that someone was able to invent such a device that can not only keep Benjamin alive, but also allow him to LIVE. Me too!!!!

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The View From The Back Of An Eagle

As a teenager, I occasionally ran into situations where someone hurt my feelings. That feeling is so foreign to me now as an adult, but tonight, reading over a medical professionals assessment of Benjamin brought back some of those feelings. I know this may be a hard comparison to understand, but this is how I felt. My feelings were hurt. I also know that this assessment was a professional one of someone only doing their job, but when you read something you are not expecting, it is a hard pill to swallow.

Benjamin’s weakness throughout makes so many physical activities difficult or impossible for him, I really try to focus on his many, many strengths. We all have areas of weakness, and this is how I look at Benjamin’s. Tonight, my heart was shattered as I read over a report that took out one of Benjamin’s stronger points… His vision. We know Benjamin has difficulty tracking and moving his eyes around due to eye muscle weakness, but I have never doubted that Benjamin was able to see me. He mimics what we do, smiles at funny faces, and loves watching “Jake and the Neverland Pirates.” Going through paperwork tonight, I read a recent report mentioning possible cortical blindness from brain damage. First of all, Benjamin has a myopathy, and yes he has a history of hydrocephalus, but his brain should be one of his strong points. Secondly, the report mentioned “processing problems.” This has never been a concern of mine for Benjamin, but I guess we will just…Add it to the list. I realize these are professional opinions and I completely respect them, but what a knife to the heart. Maybe one day I will be able to separate easier from things like this, and focus on just Benjamin, but tonight (or morning…it’s 4:59 am), all I can do is think of ways to prove this wrong.

Today, I received a medal from a close family friend who passed away. The medal is of St. Joseph of Cupertino. St. Joseph was a boy who was unable to hold a job due to his cognitive deficits. St. Joseph in prayer, however, was so close to God that he levitated with only the mention of His name. This is how I picture Benjamin…being lifted up on eagle’s wings leaving all of the ropes that tie him down. Benjamin will continue to prove people wrong, and we will all rejoice.

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