As her first birthday approached, I have spent a lot of time thinking about everything that has happened in the last year. I think most parents would agree that the first year of parenthood is tough, but with the extra challenges we have faced, this has been by far the most difficult year of my life. Bex has probably spent more time in hospitals and doctor's offices in her first year of life than I have in my entire life. I have had to hold her down while she screams to have her blood drawn more times than I can count. There have been times I have tried so hard to hold it together, but have ended up breaking down in tears listening to a doctor talk or while asking questions. I can't stand the smell of Pampers diapers because it brings back all the memories of the two weeks we spent in the hospital with her.
As hard as this year has been, it has been one of the best years of my life as well. I can't even begin to describe the amount of joy Bex brings to our lives. There are also so many things that Chris and I have to be thankful for:
- We are Parents!: It took us two years to get pregnant with Bex. Two years ago at this time, we were in the midst of fertility treatments and beginning to wonder if parenthood was even in the cards for us. We have been blessed with a beautiful, strong, and amazing little girl and we are thankful every day for her.
- Amazing Family and Friends: The support we have received from family and friends has been truly amazing! We are so fortunate to have so many wonderful people in our lives, who love and cheer for Bex. Our t-shirt sales for IS research turned out to be a bigger success than we ever imagined. We sold out of two orders of shirts and were able to make a donation of $2350 in Bexley's name to go to IS research!! She is so lucky to have so many people on Team Bex!
- ACTH Worked!: The more research I have done on IS, the more stories I have come across where families struggle to find a treatment option that works. One of the scariest things about the IS diagnosis was listening to the neurologist talk about how detrimental the hypsarrhythimia is to the brain. He talked a lot about how it is almost impossible for the brain to develop with those chaotic brain waves firing constantly. We are thankful every day that ACTH worked for Bex…..and worked quickly!!
- Small Victories: One common theme that I have read most parents talk about when watching their child face developmental challenges is that the lows are lower, but the highs are higher. This statement is so true! Chris and I get the biggest high and celebrate the smallest steps forward in her development. Whether it is saying “ba” for the first time or grabbing and chewing the church bulletin, those moments bring a smile to my face and sometimes tears to my eyes because I am so thankful that she continues to make progress!
This year has not gone as I had planned, which is hard, especially when you are a planner like I am. If someone would have told me all that was in store for us this year (the brain abnormality, missed milestones, physical therapy, and IS), I would have said I couldn’t handle any of it and wanted to give up before we even started. However, I would have missed out on all the truly wonderful things that have happened this year and all the joy that Bexley brings to our lives. So I think the biggest lesson I have learned is that no matter what happens, we will figure out a way to handle it. We have handled and faced challenges this year that I would have thought a year ago we would not be able to handle, so I know going forward we will figure out a way to take on any other challenges that may come our way. So now, when my mind starts to wander with worry or we start to get nervous about what a doctor will say, we remind ourselves of this and it helps.
Happy 1st Birthday, Bexley!! We are so blessed to be your parents!! Thank you for all the smiles and giggles that brighten all of our days!! We are so proud of all you have overcome and accomplished this year!!