Balancing on your butt

The word adversity has been floating past me; I hear people using it to describe our tough situation being turned into something positive. I agree with them that Larkin’s medical issues have been many things but I had never really considered adversity.   Moses, Noah, Job, and Joshua – now that was some adversity.  Us?  We got us some difficulities. 


I suppose that the word adversity carries a great deal of weight in my mind. It is a heavy word don’t cha think? Here is what I think is the key to staying positive and focused through the very difficult times we have experienced over the past 3.5 years; I have never ever felt alone.


Granted we have our family and friends. Goodness knows we would be lost without all of you. You have held us during the darkest moments and listened to me rail, anguish, and sob. You also rejoice with us as smiles, verbal skills, hugs, and those sweet moments of development arrive. Albeit slowly – but we’ll take em.


Going deeper – I have never been alone because I have always felt God’s presence in my life with Larkin. I have always felt an embrace, a presence by my side, a spiritual release in tears that are shared with our Heavenly Father. Prayers that went from being specific requests to Him when I stopped to breath, to a non-stop dialogue all day long. Talking with God and I don’t care who knows it. I talk to Him all day long and I gather so much peace from our relationship.


Our relationship wasn’t always so grand. I have ignored Him. I have let Him down. However, He was right there next to me when I finally got the message to be still and listen. I will still fail because I am human but through our conversations – we work through it.


I use the phrase “the rug pulled out from under us” a great deal when I speak to groups about this journey. That is exactly how it has felt each time a diagnosis or set back comes along. From the waiting room when she was 3 weeks old and I was digging my heels into the floor not wanting to go back into the doctors office to hear “Larkin has Trisomy 21” to her first EEG where I shook so badly I thought I might drop her and collapse. Dr. Farris so gently telling me what Infantile Spasms entailed, and I distinctly remember when Dr. Bertrand at St Louis Children’s said the words “it looks like Lennox-Gastuat” to me. I felt like I was falling, fainting, throwing up, and still standing there blinking all at the same time.


Blinking as the blood leaves your face, hands, blinking as your stomach pitches, and rolls. Then finding strength to say, “What is next” because that is what you must do. I’ve had to find balance on my butt as I am sitting on the floor after the rug is pulled out from under me. Not because I am a gifted Pilate’s expert, (those of you who have been in class with me KNOW that aint it) but it is because I am carrying a little girl who requires us to never ever drop her. Andy and I can hit the floor and while it hurts being dropped, we must always remember that we are holding Larkin.


Balancing on our butts, holding her, and figuring out the best way to get back up on our feet and find another rug. It is just a matter of balance and taking the time to make the best plan possible. Larkin’s Neurologist here at Carle and I were having a conversation a few years ago about a medication and I sighed and said that I didn’t have a choice and she told me that I do have a choice; I just don’t have a good one. Is that adversity?


For those of you who think you couldn’t be as strong, or handle it as well, yes you could and you would.  I have faith in all of you that you would step up and accept the challenge.  You are stronger than you know.


Today at Panera my friend, Tracey and I were having an impromptu lunch. Neither of us is able to get out in the afternoons because our kids nap but today Larkin was still awake and by fluke, we met up. We had fun and Larkin was engaging with her smiles. Her most recent tricks are making faces and noises with her mouth and today she was puckering up as I went in for a kiss. Tracey caught it on my cell phone camera.


This does not look like adversity, this looks like a child of God and a mother who is never alone.





This entry was posted in Uncategorized. Bookmark the permalink.

10 Responses to Balancing on your butt

  1. Amy says:

    aww amy.. so beautiful…

  2. That is so true. I will admit that I felt completely alone a few times and felt that God had forgotten about me and my sick baby. But you get through it and move on to the next trial.

  3. mrs.chicken says:

    How beautiful you both are.

    You both shame me and lift me up at the same time. I am blessed to have stumbled on you.

    You and Larkin are the Chambana that I love.

  4. Shell says:

    You speak the truth, Amy! None of us are alone–and you’ve found the best way to make God real . . . take Him with you everywhere you go! We are truly blessed that God loves us so much that each one of us is His most precious child. And I agree . . . to spin another phrase: adversity is 20% what happens to you & 80% what you make of it! Thanks for helping to make my journey something beautiful, as well.

  5. Ecki says:

    That’s so beautiful Amy. I really need as since I’ve been so frustrated with Kayla lately. But when we’re just snuggling quietly together, that’s when everything is OK and I know that everything will be OK in the future.

  6. Katherine says:

    I’ve been thinking of you this past week. We had a little scare with the little guy and I tried my best to channel you.

    You are such a blessing to your children and even to someone you don’t know. God Bless.

  7. Terri says:

    Pure sweetness.

  8. Jen Smith says:

    I love it, what a beautiful pict of you both!

  9. Melanie says:

    Amy that is the most precious picture!!!! I am understanding what you said about being still…I’ve not always been my best at following God’s plan and many times had to stumble to realize that the things I wanted wasn’t in his plan…in time and with many stumbles I found that his plan ended better than mine could have ever. Now I am learning and diciplined to be still and am finding so much peace with it. YOU KNOW what I mean in maybe the same but also differnt ways. Thank you for that beautiful post and picture. Thinking of you all often…hugs from the Bates family!!1

Leave a Reply