Real talk: birthdays and special needs

Quinn turned 6 last week!! This year seemed a lot harder for me than the previous years.

Traditionally, we would make mini productions out of birthday parties. This was really easy in the early years when we just had Ty. Growing up, my family didn’t really do birthday parties so I wasn’t going to either. When Ty’s first birthday rolled around, it just seemed so monumental. With my sisters help, collectively we let our creativity run wild and birthday parties grew into big affairs. My thing was the cake!

With Quinn’s birthdays, it became very tough to hold these parties. At first, it was because she was a January baby. Later, it was more for my own mental reasons (see REAL TALK below).

• 

• 

• 

• 

• 

• 

Her first birthday party was a typical affair. It was Care Bears themed, inspired by a onesie she had on when we FaceTimed with my sister. Everyone was so excited to plan a party for a girl this time.

• 

• 

• 

• 

On her 2nd birthday, hosting parties just didn’t make sense for that year. I was pregnant with Eli and his due date was 2 days after Ty’s birthday. Because due dates are unpredictable, we were going to give Ty a special playdate for his birthday. So we did the same for Quinn. We took her to Coco Keys (an indoor water amusement park) with another family friend. We knew Quinn loved the water. She swam before she could walk. She took her first step at 19 months old and was swimming long before then. The running family joke is that she’s going to show us all and become an Olympic swimmer.

• 

• 

• 

On year 3, we merged all 3 kids birthdays into one big birthday bash. My sons’ birthdays ended up being 4 days apart in April so why not include Quinn too? My in laws migrate to Florida during the winter so this is just convenient for them to make it. And of course, we would take the party up a few notches to make up for the combined party.

• 

Year 4 was another birthday bash.

• 

On year 5, we kept our celebrations private. By then my depression was an all time high. I didn’t want to give a status update on how Quinn was doing and what we were trying. It was exhausting trying to keep a brave face when I was unstable inside. Instead, we took the kids to a bounce house. It didn’t feel special enough and I told Mike “we are not doing that again.” Quinn had a great time and might have not known any better but I wanted better for her.

This year, we did a playdate at a trampoline park. We invited another family friend to join us. Their oldest daughter had been in the same grade with Quinn for the last 3 years and we’ve grown closer. They understood our family dynamic better since they are familiar with special needs. The play date went very well and Quinn had a wonderful time. We went during Toddler Time so that music wouldn’t be too loud and the lights wouldn’t be dimmed. Quinn probably could have handled the stimulation but I want to keep things calm and easy for myself. Quinn’s age was brought up because she’s past the age limit for Toddler Time (cutoff is 5yo) but they were very understanding and let us in.

---

Ok, here comes the REAL TALK. Every year, Quinn’s birthday hits me harder and harder. On her actual birthday, I am happy and excited. We always have cupcakes and sing a song. The depression comes a few days/weeks/months later when I have to admit she’s 6 years old out loud in conversation or a meeting. It’s another year where her window of rapid growth closes. It’s another year that she enters the next age group, when developmentally, she is still at ~2 years old. Every year, the gap between Quinn and her peers gets larger and more obvious.

I know what you’re thinking. I just need to accept her for who she is and where she is and be grateful. Forget what everyone else is saying or thinking. I agree with all of that but it’s A LOT HARDER said than done.

It took me so long to get used to introducing my daughter as a “child with special needs”, but only because it is the quickest way to stop the questions and looks (and possible judgement).

Just because I can say “special needs” in the same sentence with “Quinn” now without tearing up, doesn’t mean I’ve fully accepted Quinn’s current state. I almost can’t accept it because I’m afraid I’d lose my drive to keep up with all this work. My personal therapist said in some way, we need a little touch of delusion to cope with all of this. He is right. To the untrained eye, she could pass for a typical 6yo. So it helps feed my illusion that everything is ok and will be ok.

Her birthdays bring me back to reality. At some point, I’m not going to be able to keep my illusion. For my own sanity, I need to keep myself in check with reality so I don’t crash and burn if/when Quinn’s reality does not turn out to be what I want for her. Of course, I love her and am so proud of what she’s accomplished so far, given her very difficult circumstances. But I don’t think I will ever stop wanting her to actually play with her peers or express what she is thinking or independently taking care of herself, as her peers are doing right now.

My 2019 mantra:

“We are trying to defy odds. That’s why this is so hard.“

No specialist or therapist will tell me what their “best guess” prediction is for Quinn because they don’t know or don’t want to discourage us. Anything can happen. She’s still so young. The older she gets, the more sure her path is determined. I get that.

So I give myself permission around her birthday to sink in a little depression while I mourn for what could have been. When I’m ready, I pick myself up and continue the good work of trying to raise a strong and independent woman. I continue to research other alternatives and discover life hacks to make our world just a little easier. I continue to take photos and videos so I don’t miss the small stuff. I continue on and hope for the best. Because if all of this is the cost of having Quinn in my life, then I’ll pay it.