Ichthyosis Awareness Month
After learning that Thomas had ichthyosis we discovered that May is Ichthyosis Awareness Month (IAM). I always thought it was interesting he was born during the month dedicated to the skin disorder he had. For this reason, I decided in April that I would devote the month of May to educating people about ichthyosis and remembering Thomas through pictures on Facebook and Instagram. There is a lot to learn about his skin condition and the different types. If you haven’t already, I hope you’ll take the time to learn more here.
After Thomas was born, I had many thoughts about his first birthday and how we would celebrate. One thought that never ever crossed my mind is that he wouldn’t be here physically for his party. I never imagined he wouldn’t be here to eat his smash cake, to blow out his candle, for us to sing Happy Birthday to him, and to swim in the pool with his daddy. It is heartbreaking that those things didn’t happen, but what I do imagine now is that he sat in Jesus’ lap while our Lord sang Happy Birthday to him, and there is no question he could hear it! I can’t help but smile thinking about his laughter as he was celebrated by Jesus and our family and friends who are with him. I wish I could have been there too as I know it was a celebration like none other.
The birthday week
As Thomas’ birthday approached, I knew I still wanted to celebrate his precious life as if he was still here physically with us. I told Buddy I wanted to have a party at our house and invite our families and a few close friends. Right after Thomas passed away I needed a project so we decided to completely redo our den. Buddy loves projects so he jumped on it very quickly. We had a lot of pictures of Thomas printed and framed for the funeral and I knew I wanted to use them in our new den. One Saturday, while my mom and I shopped for a few more décor items, Buddy painted the entire den, so it was ready to be decorated by the time we got home. But I realized very quickly that I wasn’t ready to put everything out yet, so my project went undone for several months. I write all of this to say the project had to be completed before everyone came over for the party so Buddy and I spent Thomas’ birthday week decorating the den. It was very hard and I cried with each picture of Thomas I placed as they brought back many memories. Along with the pictures, Buddy and I started to relive our first moments with Thomas. We cried together many times throughout the week. We also spent a lot of time getting our Web site ready to be launched on Thomas’ birthday. We intended to publish the Web site back in the fall to keep everyone updated on Thomas but then we went into the hospital and it had to be put on hold. I knew I still wanted to have the Web site in hopes it would impact, bless and benefit others but I didn’t know if or when I would be ready to release it. As time went by, I informed Buddy in April I wanted to debut it on Thomas’ birthday; I believed it would be very special and sort of like a birthday present not only to Thomas but for everyone else as well.
As you can imagine, Buddy and I woke up in tears as our sweet baby wasn’t in our arms on his first birthday. While it was hard to get out of bed, we knew we had a busy day ahead of us. We took Max to Petsmart to be groomed and then headed to the cemetery to decorate Thomas’ grave and spend some time with him. We talked to him, took a lot of pictures and ate a cupcake for him. We then picked up his cake from a very special friend. The theme of Thomas’ birthday was baby elephants, which is what his nursery is done in and also what our friends did my baby tea in last year. Our friend made a small cake for my baby tea that we saved because it was perfect for Thomas’ smash cake. Even though I knew we wouldn’t eat it, I still wanted to display it and put a #1 candle in it. As we traveled home to get ready for the party, I shared with Buddy some of my favorite memories with Thomas. I always enjoyed cuddling with him, especially after bath time. Thomas HATED getting a bath, so I got to rescue him every time and we both loved it so much. I also loved laying him on my chest as we watched Bachelor in Paradise together. Another favorite memory I mentioned was Thomas’ first (and only) beach trip. My parents, Buddy and I took Thomas to the beach in September before he became very sick. I can’t tell you how thankful I am we got to take him to the beach and make those memories. We have sweet pictures we will treasure forever. I also really enjoyed Thanksgiving Day with Thomas; it was just a good day. I held him a good bit of the day, and then Buddy held him for a while. My family came to visit us in the hospital and brought us dinner. We had great conversation, a lot of laughter and took some precious pictures with Thomas in his little turkey outfit. It was one of his last good days before he became seriously ill.