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This Girl is AMAZING

We spend a lot of time talking about AJ, and sometimes his Big Sister just doesn’t get the credit she deserves. I’m pretty sure that although this is hard on all of us, it’s hardest on her. We had a pretty good routine at home prior to AJs arrival. Bedtimes, bath times, chores, homework times, story times, you name it. She has always been incredibly excited to be a big sister.

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Averie wanted to have a matching outfit for our girls day out. Aaron works on Saturdays, so on the weekends where Averie doesn’t go to stay with someone else we have a girls day.

She was at the hospital and held him before we knew anything was wrong. She passed him over to my mom to hold for maybe 5 minutes and then declared “Id like my brother back now please”. And she was very reluctant to give him back to me even to eat until she realized that she couldn’t help feed him. She was there when we got the news of him being transferred to U of I, and that there was something definitely wrong with his heart, and this poor girl whose parents typically don’t break down in front of her got to witness her mom and dad nearly crumble. I don’t think I’ll ever forget standing up in the NICU at St Lukes with tears streaming down my face but somewhat keeping it together when she came up put her hand on my back and told me “don’t worry momma, it’ll all be ok”. And if you’re wondering, yes, I completely lost it at that point – but she also gives amazing hugs. She went home with grandad that night, and came back to the hospital to pick me up and go see her brother again the next day. I remember her holding my hand the whole car ride to Iowa City.

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Her love from her brother still hasn’t changed, as evidenced in her asking Santa to for her brother to get better for Christmas among other things. She loves her brother with her whole heart. There are random moments where I’ll catch her crying quietly – usually in the bath or when I go to tuck her in at night, and when I ask her what’s up she will tell me that she’s sad for her brother, misses her brother, or doesn’t want her brother to die. It breaks my heart, it’s pretty hard to explain these things to a kid so young, but she’s smart, she understands it far better than I would have expected a six year old to do. We hug a lot and usually end up both in tears in those moments.

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I imagine this has to be the hardest on her out of all of us most of the time though.

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Thankfully she was used to mom traveling, because I was gone for the months he was at CHOP, and am still gone 3 nights a week. Thankfully she’s used to sleepovers at Nanas and Grandmas. Also, we are thankful that she really is a “go with the flow” sort of kid because her entire world was rocked pretty hard the moment her brother was born, and not in the way we had expected.

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Despite all of this, she has rocked her first grade year thus far and is meeting and exceeding the end of the year benchmarks with marked improvements from the beginning of the year – a testament not only to the amazing support she has at school from her teachers and staff, nor only to her grandparents and other day care providers for stepping in and making sure she does her homework and practices her reading and math, but mostly to just how awesome and driven she is. She really has shone this year despite everything going on and I couldn’t be more proud of her, nor more thankful for all of the support she’s received. It definitely takes a village some days, and we are eternally thankful for the amazing village we have.

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The birthday cake she decorated for me. One of those “Grandma said I could…” Moments where she said grandma Janet said she was allowed to use nutty bars to decorate the cake. 

Some days things are a mess, we confuse after school arrangements, forget our homework, fail to put on clean clothes, oversleep after a late night at the hospital or have bad dreams and just want to lie in bed for an extra hour and cuddle. Some days she works the system and pulls the “Dad said I could / Grandma said I could” statements out and gets away with something she wouldn’t normally. Some days are harder than others and are laden with tantrums. And some days she cries when mom or dad go to the hospital and wants to know why we can’t all just stay home and we explain again that if she were in the hospital she’d want someone with her too.

But largely, she pulls through, hasn’t lost her happy attitude, ability to follow (most of the) rules and still has a drive to succeed. She has never really seemed to resent her brother, which is what I’d expect out of most kids in her situation. She’s always happy to see him, or pictures of him, even if she gets bored after an hour and begs us to check the activity calendar. She nearly always comes home from school with a smile and never, ever ceases to amaze and inspire me.

Anyway, before this gets any longer and sappier… here’s to Averie, and the compassionate, smart, sometimes sassy, always amazing kid she is… Love you Bug!

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