“Ch Cha Changes!”

 

A lot has been happening in our lives lately. In September, Ben and I finally found a home we could call our own. After six long years of looking, constant changes in the housing market and seeing one bad house after another, we finally found one that felt like ours. I know there are so many people who can relate, but packing and moving SUCKS.

 

For anyone who knows me, I hate change.  I don’t adjust well, I get really bad anxiety and when we made the decision to move from the duplex to our house, another wave of grief hit me. I spent 6 years living at the duplex, which is the longest time I’ve lived anywhere than my childhood home. Major life events happened in that duplex! We got engaged and married while living there. We lost my sister while we lived there. We had our first child while living there and went through hell on earth with her diagnosis and treatment. We celebrated her end of therapy, clear scans, and two birthdays while living on Jimmie Street. There were so many memories there, not all of them are good, but damn, it was a good place to start out.

 

The hardest part about finding a home in the market isn’t just the pricing…its walking into a house that’s occupied and trying to imagine it being yours. In the time we looked for a house, we almost found one in 2019 but it ended up not being the one for us. When we found our house, I think it was the first time that I walked into a house and felt like I could call it home. Being a ranch, it had a lot of potential for Brooklyn because we still don’t know what kind of equipment, if any, that she will need. I felt a wave of calm walking in and after looking around, Ben and I agreed that this was home.

 

I was worried about how Brooklyn would adjust but home girl rolls with the punches and has adjusted swimmingly. At first, she kept asking to go “home” meaning the duplex, but after we got her things here, she warmed up to it quickly. I think she warmed up faster than I did! When we finally cleared out the duplex, I cried. It was a good home for us for the time we were there and thus ended our chapter at Jimmie Street.

Moving on to other changes, if I were to tell you about the growth our daughter has had….you would be blown away. Back in September, Brooklyn was scheduled for surgery on her eyes. I think I wrote about this before, but I was desperate to find a second opinion. I didn’t want to put Brooklyn through her 8th surgery in two years. After we found a new doctor, it was decided Brooklyn needed vision therapy instead of surgery which made my mom heart happy. Making the decision to put your child under general anesthesia for another surgery is one of the hardest things i think we’ve ever had to do, and we do not take that decision lightly. I was glad to find an alternative. In October, Brooklyn got her first pair of glasses to help her eyes relax while she’s looking at things and also help strengthen the muscles in her eyes so that her gaze is more straight. Everybody always talks about her side eye, and I always say that she can’t help it, because she really can’t. At first she didn’t adjust to her glasses well at all. She hated the! There was a lot of bribing with Bluey and The Lion King But eventually she’s gotten used to them and we’ll wear them for extended periods of time. I’ve never seen a kid look so cute in glasses before! Now in addition to her physical therapy and occupational therapy, we’ve thrown some prisms in with her glasses wearing in order to shift her world to the right so that her gaze will go to the right and strengthen the muscles in her eyes. She kind of looks like Harry Potter in her glasses and it cracks us up!

 

Brooklyn has also gotten leg braces that came in two pieces. One piece goes just above her ankle, and the second piece goes up her leg just under her knee. She has a lot of weakness in her legs and doesn’t quite stand on her feet properly. The purpose of the braces is to give her proprioceptive or balance feedback so that she knows what it’s supposed to feel like when she stands up properly. Let me tell you, these braces are great, but I feel like they add 20 lbs to my kid! She is heavy! She tries to take steps when we go out and she has her shoes on, but does not like to do it for long periods of time. Brooklyn is learning how to pull to stand on everything and it is so cool to watch, but also terrifying because you really have to think about everything you have out and whether or not she can reach it. I love to see all the progress that she has made since she finished chemo almost a year ago.

 

I know I’ve talked about it before, and we’ve always wondered what Brooklyn’s language development would look like because of the amount of the brain that she’s missing, but to hear her ask for songs from The Lion King, Moana, Bluey, and basic nursery songs, is incredible. She knows the words to songs, and will sing “Mr. Golden Sun” with me. She loves to sing how far ill go from moana with Ben and it makes my eyes sweat every time! There is just something so precious about a tiny voice singing. To see her in church trying to sing along is so sweet, and to hear her talk about “far Pete” makes my heart happy.

 In addition to singing Brooklyn now has a long list of people that she knows. Any time the dog barks she goes through her list of people that typically come to the house starting with my mom, going through all of the grandparents, and several other family members. She also loves to talk to anyone who will listen while I’m on the phone. I love listening to her imaginary conversations too! Several of them start with “Hi Papa dawatch! What doing? Watch Bluey! Oh das nice! Okay! BYE!”. She pretends to talk to a lot of people but is emphatic about actually calling people.

 

Brooklyn spent some decent time at the Columbus at Akron zoo this year, learning animals and their sounds. Since watching “The Lion King”, every lion is “Simba”, and she has discovered tigers and loves them. Brooklyn loves dogs, cats, and lions. She is starting to three point crawl around the house growling like a lion, which always makes us laugh. There is no greater gift than watching this child grow and develop and to see how cognitively on track she is! She’s started branching out and trying new foods as well which is AMAZING!!!!

 

January 29^th marked 1 year since Brooklyn finished her last round of chemo and had her last Nulasta shot, and this month marks one year since she completed treatment. Since her last clear MRI in December, she is scheduled to have another MRI March 5^th. We have truly been blessed with growth, love and some normalcy as a family this past year and continue to teach Brooklyn that she is brave, she is strong, she is loved, and that she is a blessing- all of which are starting to become verbalized by this beautiful human. We always want her to know that she is fearfully and wonderfully brave.