this is the day…

A little over 18 years ago, I felt like I got burned.

Here I was, our third son had just been born, and within an hour, the very intelligent, but awful-bedside-mannered geneticist was in our room, suggesting this must be “the saddest day of your whole life.”

There’s something within me, hearing those words once more, that makes me want to fight…

No, I give no man the power to declare for bad or sad what God has allowed to play out for good.

It wasn’t that the day wasn’t hard or sad or other perhaps well-intentioned adjectives. I just knew that such wasn’t the way it had to be.

There’s something about having a child born with a disability that’s humbling from the onset. There’s this big pit in the stomach and gulp in the throat that parents who share this experience can immediately recognize in one another, just looking them in the eye. It’s a little of this, “Lord, how in the *&$%#! am I going to do this! You trained me for something else! I have all these plans… all these expectations…”

And just like that, you have to throw the plans and expectations right out the nearest window.

For Josh, it was trisomy 21 — Down syndrome — or a third copy of that twenty-first chromosome. Additionally, he had an atrioventricular (AV) canal defect, meaning there was a hole between his heart’s chambers and the valves that allow the blood to flow — an unsurvivable condition unless fixed in the early months of life.

Also for Josh, he got sick before then with a nasty respiratory virus (aka RSV). As documented here, we spent most of the month of March of 2002 in the cardiac ICU wing at Cincinnati Children’s Hospital. Joshua was on a respirator most of that time, unable to breathe on his own, with many moments terrifyingly touch and go.

But once the shock wears off and the medical issues are for the most part dealt with, then comes real life. Real life for the parents of children with special needs means changing your expectations, loving them just like any other kid, preparing them for adulthood, focusing more on what they will teach you as opposed to what you will teach them.

I can remember thinking at some point in those early years… “Yeah, fine… this is all well and good and true. He’s kind of cute right now. And everyone always talks about how loving kids with Down’s are. But what about when he’s not so little any more? What about when he’s not so cute? What about when puberty’s past, and he has man hair and everything? What will we do then?!”

And if I’m honest, I admit. That day scared me.

Friends, today is that day.

Today, Josh finishes his last day of high school.

And it’s a little crazy. I mean, with the spring of 2020 being nothing like how we thought the spring was going to be, the reality is that the story of my life is nothing like I thought it was going to be.

But what’s crazy? 

It’s better.

I have learned more. Grown more. Been tugged and stretched and maybe cried more. Learning more about who God is and who I am in relation to him. But it has never been anywhere close to the so-called saddest day.

Four days ago, I was standing in my kitchen, so proud of myself for being again really creative, making a homemade, pretty gourmet-ish, spicy sauce. As the container I was holding slipped out of my hand, I instinctively brought my non-oven-mitt-covered hand over to catch the falling container. I then quite painfully burned a good two-and-a-half by four inch section of my left wrist. Friends, it was nothing short of awful. 

Just yesterday, no less, I looked down at my still sore, probably-now-scarred arm and noticed something…

Right in the middle of the charred skin, there is a well defined, small shape. Clearly, there is a heart, smack dab in the middle of my wound. Yes, I was wearing a thin bracelet with a small heart charm. With burning hot sauce caught on the charm but the bracelet not immediately removed, the charm essentially served as a branding device on my wrist. But what was crazy, was that it was only when I was willing to look a bit past the burn and the pain — which still sometimes exists — could I finally see the beautiful. And now, that is all I see.

Congratulations to our Joshua. What a glorious day today is… what a special celebration!

It is beautiful indeed.

Joyfully…

AR

19 Replies to “this is the day…”

  1. Beautifully written and through your posts, I can see how much Josh is a blessing to your family. God is good! Congratulations to Josh on his high school graduation. Glad your arm is better too. Love the little heart left protected on your arm.

  2. Very well said. I firmly believe that when God searched the universe to see where He would place Josh, he took into account three people who’s lives would be changed and moved towards His end. As I have seen with other evidences in the past, He chose wisely.

    1. Beautiful, Joshua is a blessing to so many including me and Todd. Josh does so much more than just bring purpose-he brings joy; happiness; interaction; and understanding to a harsh, hard, cold world. Just like several other people I know with special needs; he brings many important things to this world ; yet this world is trying to extinguish . We must vigorously continue to battle the issue of abortion!!

  3. Oh my. Relational writing at its finest. We all have, for whatever reason, that “saddest say” experience. Yet we also have the promise of being branded with/in the heart…if we allow it. And may I add that this amazing young man who finishes HS today has a huge heart. What other HS grad calls to say he loves me and wants to thank me for the influence we’ve had in his life? Yes, your have trained him up well…and God has used him mightily.

  4. Fabulous post! I say what Josh said to me this January…I want to know you (him) better! Please tell him that. Can’t wait to see what great things lie ahead for all of you. Love to the Albins!

  5. Beautifully written sister and as his extended family we celebrate Josh as well. See ya in a couple weeks to give the grad a big hug.

  6. Thank you for raising Josh into the young man he is today. I am so thankful for that night out on the back porch with you when God hit us between the eyes that it was time to get to know Josh better. We have cherished every moment with him. Like you, he has taught us more than we could ever teach him. I look forward to many more times with that sweet boy and you guys whom I’ve known forever, and love like family. Here’s to the next chapter…!

  7. Josh is a gem in God’s s garden. He has been blessed with wonderful parents and brothers to love and nourish him to be the incredible man he is today. I just can’t believe he has graduated from high school. I am so proud of the man he has become and I know God will continue to bless him and move him in the direction he wants him to go.
    Albin’s , please don’t be strangers to your Cincinnati friends. We love you deeply.

  8. Such a Gem of a writing and Gem of a person Josh is today, yesterday and ALWAYS ❤❤❤ As a parent of a son with with different abilities, raising our boys is both the most challenging and Rewarding Blessings that God ever entrusted us with all our lives. And I am so overjoyed He also put you, Josh and your family in my life. Thank you for sharing your story. Love you ❤❤

  9. Congrats to Josh!!! So beautifully written, too!!!! By watching your family, our family has grown as well……thank you!!!!

  10. Ann
    Yet another wonderful peek inside your head over this 18 year period of “here you go”.
    Moving piece…but disappointed with no pictures or videos!

    Cheers to Josh!!!

  11. Once again I am touched by your incredible writing. I love getting these little peeks into the life and heart of such a great friend. From me to you I give a great big “virtual hug”. Congrats to Josh (and to the both of you) on his graduation. Looking forward to the plans He has for him.

  12. Sweet Ann this is so beautifully spoken! I have always felt this special place in my heart for Josh and many like him who make this world a better place. You are one of the amazing mothers who have sacrificed and given so much of yourself and as a result we all benefit. I truly believe Josh is a beautiful golden nugget in the Father’s heart and he will live to see and be a testimony of God’s power and demonstration in the days to come. Thank you for sharing!
    ☝️

  13. Thanks for sharing Ann. Tears of joy are flowing. You and Josh are such an inspiration to many. I love and miss you❤❤

  14. Love you Ann, beauty all around us, when God gives us eyes to see…
    Bless you and happy Birthday to Josh and to you, Mom!!

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