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And it's Christmas

And just like that it’s Christmas! The past weeks have been some of the busiest of my life but quite honestly the most rewarding. When Avery came into the world we were thrown a lot of curve balls. Nothing was for sure and phrases, diagnosis’, gtube, seizures, cortical vision impairment, etc. were all things that came charging at us over the course of her first 2 years. In the midst of it all I had to remain strong and advocate for Avery. There were so many times where I crumbled and fell but had to turn right around, get back up, and press on.

2 years ago on Easter when I was in the PICU with Avery I couldn’t help but think of all the other parents out there. The families that were far less fortunate than we were, couldn’t spend every waking minute by their child’s side in the hospital, or let alone purchase every single item that “could” maybe help their child. My heart would ache for these parents. That’s where Averys Light was born. It didn’t actually launch until this year on August 6th but the dream came alive two years ago on that snowy Easter morning. The last few weeks/month have been spent shopping for adaptive equipment for kids, wrapping, making more bows than I thought I knew possible, and delivering each and every gift. Oh but the deliveries… getting to stare each and every one of these beautiful people in the face, see the hope we just gave them and see the SMILES. This is when I thank God for gifting me Avery and igniting a passion inside me for these amazing people.

I was on my way to what was the final delivery, I of course had my Christmas music playing when the classic “Breath of Heaven” came on. Even though I know all the words and would typically sing I just sat and listened.

“Do you wonder as you watch my face

If a wiser one should have had my place

But I offer all I am

For the mercy of your plan

Help me be strong”

Now I understand this is about mother Mary however, I couldn’t help to have those lyrics resonate with me… I wonder all the time why God chose me, think that He should have chosen someone much wiser that has already walked this path. Yet in the midst of it all I will give all I am, trusting His plan. He has made me strong thru the process and thru it all Avery’s Light was born.

I arrived to my final delivery in wonder and the lyrics still resonating with me, to be greeted at the door by a gentleman about my fathers age. They had adopted 3 special needs children that required 24 hour care, not every moment was easy, he probably had days where he felt someone more qualified could do better. BUT he was doing it and those kids adored him! So once again I am humbled and thank Avery for opening my eyes to see the world in such a different light, for her grace and for helping me find my voice and most of all my passion!

This year hasn’t been easy, in fact it’s been really hard. My actual business has drained me, there has been little progress with Avery, and I have felt I have been pulled in a thousand directions. However, to end the year on such a high note with building relationships with other special needs families in the area, being able to bless so many this Christmas and most of all see the beauty in these children has been forever changing.

Avery has been busy as well. She is in preschool 2 mornings a week, just started hippo (horse) therapy, was invited to her first friends birthday party that was just for her and not her siblings, had her first Christmas concert, and is still loving crawling around and listening to music. My heart has melted so many time in the past few months. Watching her get her face painted at her friends birthday and her friend greeting me by saying “Avery is my best friend”. To watching her clap during her Christmas performance. These are all things I never knew we would accomplish but here she is, continuing to prove the doctors wrong!

This last week Avery had a seizure it has been 7 months since her last one. She was transported to the hospital for a few hours of monitoring and then we were released. It was a bummer, if I am honest, I was discouraged. It’s hard to not let defeat take over. We have come so far yet we take a huge step back. This is our life, Averys life and in moments like this we are reminded how fragile life is and reminded to not take this life for granted!

I read an article the other day “Being a special needs mom is…” the article was filled with exactly what life looks and feels like as a special needs mom. Below are a few of the things…

“Letting go, and letting God.

Spending thousands of dollars on things that “might” help.

Feeling guilty a lot.

Being fascinated by a babies fine motor skills.

Loving fiercely.

Learning how to have a louder voice to make up for the one your child’s lost.

Never sitting down alone, or just never sitting down.

Feeling a sting in your heart when you see a toddler walking next to their momma at the store.

Being strong.

Being weak.

Feeling that no one truly understands.

A new found passion for inclusion and acceptance.

Making decisions, lots and lots of decisions.

Asking God why for the thousandth time.

Saying I love you a million times even though you know it won’t be reciprocated.

Kissing them on the nose 1000 times a day because it’s the closest feeling to them kissing you back.

Being needed every second of everyday of every week of every month for the rest of your life.

Finding joy in the itsy, bitsy, teeny, tiny, little things.”

I have chosen to find joy, to advocate for my child and for others, to kiss and hug Avery all the time because I never know if it will be my last, and to be so passionate about inclusion that I am determined to make it the new standard.

Could He have chosen someone wiser? Yes! Do I fail everyday? 1000% Yes! But I am determined and forever grateful He called me to run this race! Cheers to 2023 and all the things that are to come this year!

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