Happy birthday, Adelaide!

Next Wednesday, October 17th, Miss Adelaide Grace will turn 3. Her birthdays have always been bittersweet: While we are thrilled to celebrate another turn around the sun together, (and goodness knows I LOVE planning a party), we are reminded that another year has gone by and she is still struggling and seizing. I mean, I’m pretty aware of this on a day to day basis, but birthdays are a forced reckoning. There’s no compartmentalizing and I can’t turn this milestone into an inchstone. Birthdays are what they are, and they come whether you are ready for them or not.

10/17/16 Adelaide’s first birthday party

10/17/16 Adelaide’s first birthday party

Jackson’s birthdays are different. Disclaimer: I know I shouldn’t compare the two, but c’mon, that’s not realistic. Ok, back to Jackson. I’m in awe of how fast he’s growing, who he’s becoming and thrilled to see him so excited on his day. As a parent, there is something so rewarding about watching your child develop into an individual with thoughts, opinions and feelings of their own that they can articulate. Then to be able to get to know the person they are and dream with them about who they will become. With Jackson, we can reflect on how much progress he’s made over the last year… not how much we’ve lost.

We celebrated Adelaide’s 1st birthday in Chicago. We had been living here for a month and there were all of 10 people in attendance because that’s pretty much all the people we knew outside of the Hamilton cast. Due to a pneumonia brought on by aspiration we had just added an NG tube to the mix through which Adelaide was receiving all liquids. Several times a day I would thread the small tube through her nostril down into her stomach and her birthday was no exception (I took it out for photos). We had also recently started her on a ketogenic diet as a seizure treatment so she was not going to be permitted to have sugar for the foreseeable future. That meant the adorable first birthday smash-cake was out. Even a taste of frosting could alter the efficacy of the diet. That said, we had a lovely afternoon with friends and family, I decorated our home and spent way too much on on the party and a beautiful cake. Then, later, cried because she couldn’t eat the cake and because I was terrified of what her future would look like.

10/15/17 Adelaide’s second birthday party

10/15/17 Adelaide’s second birthday party

Adelaide’s 2nd birthday was a slightly larger affair, still hosted in our home and I still spent way too much money on the cake and decorations. This party looked much different though, this time we were able to invite some of Adelaide’s friends: other children with disabilities who we had met over the last year. Instead of silently obsessing over what Adelaide should be doing at that age, we sat with other children and laughed and chatted with their parents. By age 2 we had a better idea of what we were up against and hopes of catching up had been put aside for a reality of just trying to make today a better day than yesterday. We sang happy birthday and served the cake - to everyone except Adelaide, who was now being fed through a g-tube in her stomach and still not eating sugar thanks to keto. There were definitely still tears that day but instead of coming from a place of distress it was a mournful cry. Similar to the sadness you might experience on the birthday of a deceased loved one. 

This year, marks several changes to our birthday celebration for Adelaide. For starters, we will not be hosting it in our home as we have invited too many guests. You see, I wasn’t convinced we would be celebrating Adelaide’s 3rd birthday. I don’t mean for that to sound morbid but when you watch your daughter be resuscitated twice, hospitalized in a coma and hold her through countless excruciating seizures, you just don’t take any day for granted. We are celebrating Adelaide turning three because she’s alive. She made it. Hell! We all made it! It took a small village of people but we managed to keep her with us for another year and THAT deserves celebrating.

9/22/18 Adelaide at nearly 3 years

9/22/18 Adelaide at nearly 3 years

What also deserves celebrating is that for the first time ever, Adelaide will be able to eat a little cake on her birthday! We came off the ketogenic diet a few months ago when it became evident that, if it had ever been working, it wasn’t anymore and we could resume a traditional diet. Her swallowing strength is still pretty questionable so she may just get a bit of frosting but, finally, she can have all the frosting her little heart desires.

It will still be an emotional day as we note that Adelaide is not doing better at three than she was at two. I will allow myself to mourn the daughter that will never be and know that thats ok.  I wish she could enjoy the party. I wish she knew how all the people in that room have fought for her. I wish I could take away her pain and struggles and seizures or at least give her the gift of a treatment that will work. But I can’t. She won’t know its her birthday or what a normal three year old “should” be doing but I do believe that love from another can be felt and perceived. So hopefully, she feels all love from all her well wishers and that gives her the nudge she needs to continue her fight so that we can celebrate her again next year.