Friday, June 11, 2010

Happy Birthday?...

It is almost June 21st. Tessie's birthday. The Toots and I handed out her party invitations to all of her classmates today at school. The kids all seemed pretty excited for her 'Cowboy/Cowgirl' themed party complete with pony rides for the kids.

I have debated about writing this post for a while. In fact, I have actually started and deleted it on three separate occasions. Why, you ask? For one simple reason...I am afraid I will come off looking like a sympathy seeking jerk. But I promised myself when I started this blog that I would write honestly and about whatever was on my mind at the time. With that, here goes...

I do not enjoy the Toodle Bug's birthday and I never really have. It is the one day of the year that my self pity wins out and I dwell on the 'what should have beens' with our situation with The Toots. It is a concrete, black and white, inescapable reminder of all the things a 'normal' child should be doing that Tessie will never do. It is the day we celebrate her being another year older, while in reality, she is the same age mentally. It is the hardest day of the year for me.

I have already planned a party based on what the other kids in her class voted on for her to have. My reasoning is that if the other kids feel involved in the whole party process, they will actually show up the day of the party. For my part, on the morning of the party, I will be worried the whole time that most of the kids won't show up. While Tessie would not realize it, I would, and it will break my heart for her if it happens. Luckily, this particular group of kids love Tessie and don't seem to have "outgrown" her yet.

I will bake her a cake that she cannot eat, have the other kids blow out her candles and all make wishes, and plan games for the kids that, for the most part, she cannot play. I will ask each kid to open the present for her that they brought and will 'ohh' and 'ahh' over it way too much because I feel like I need to make sure the kid knows that Tessie likes it. Meanwhile, Tessie may be asleep. Next the kids will take turns whacking at a pinata filled with goodies that Tessie cannot play with. They will rush to fill their baggies with loot while Tessie sits in her wheelchair thinking who-knows-what. I will plaster a smile on my face and crack jokes with the kids and adults while wanting to cry the whole time.

See what I mean? Sympathy seeking jerk.

In the evening, I'll have to repeat the whole torturous performance for my family. Well, minus the games and pinata. I will be counting the seconds until the day is over.

By the end of the day I will be exhausted. Absolutely drained from my 'performance' of being a 'normal' mom. I am not a 'normal' mom. Not with The Toots. Their is no 'normal' to be found. And what is so "funny" about it all is, any other day of the year I will honestly tell you, "Hey, this is not a bad life. Yes, it is hard and yes, sometimes very, very scary but not bad. I am happy and lucky to have the life that I do." But on her birthday, I cannot summon it from anywhere.

At bedtime, after putting The Toots to bed and our nightly ritual of meds, alarm hook-ups, and making sure that she has Baby Tad singing her lullabies, I will immediately get into my bed and try not to cry.

And here is what I really think my heartache on June 21st actually stems from:

I hate her birthday for all that it represents that she will never do, and I love her birthday because it means that she lived another year to celebrate it. And I will lay there in bed and pray to God that I get to celebrate another birthday with her next year.

However, just in case you are wondering if I plan on 'blogging' about her birthday party this year, I do. And it will be written, not from my perspective, but from Tessie's. And trust me when I tell you, unlike me and this particular post, she will have you smiling. She does not feel sorry for herself one little bit and never has.

Hmmm...maybe that is one of the many life lessons that my little Toodle Bug is here to teach me?


  1. Joanna, while we grieve with you for what should have been, we are blessed that what could have been was not. All of us could have been without two loving, generous souls that have made all of our lives richer. I for one will be celebrating with you, for on the 21st you gave us all a gift - the lesson of unconditional love. "It is what it is", to quote someone (in)famous. It is love.

  2. Angie couldn't have said this any better. You, your family and Tessie have all given us the gift of knowing unconditional love. My motto in life has been "It is what it is" and I truly believe that with every ounce of my being. You are a remarkable woman and Tessie is a remarkable child. Please don't ever forget that.