Adopting Kai: Adjusting to ARM (anorectal malformation)

November 27, 2017 adopting a boy, adopting again, anorectal malformation, imperforate anus, neurogenic bowel and bladder, November 2017 Feature - Urogenital, Urogenital System 8 Comments

A while after our family adopted our daughter Hannah, we were touched by the face of a sweet boy who was living at China Little Flower in Beijing.

After months of praying and searching, we were finally matched to this child that I had already fallen in love with.

When we were able to read his file, my heart sank when I saw some scary (to me) diagnoses:
Imperforate Anus.
Neurogenic Bladder.
Single diseased kidney.

Although this child was already mine in my heart, I was overwhelmed with what these needs might bring to our already busy family with four other children. Imperforate anus had certainly not been on my medical needs checklist, and it was not something I had seriously considered nor desired to learn more about.

But when it is your child, you will do whatever you need to do. And so, with trepidation, I went forward.

I learned as much as I could. I joined a fantastic facebook group of moms who had adopted a child with ARM (anorectal malformation) from China. These moms were knowledgeable, encouraging, and amazing, and yet I still found myself overwhelmed with what was to come.

Then the day came when Kai became ours. And we fell head over heels in love with this boy…

this boy who has the sweetest heart of any child I have ever known.

After we got home we traveled to Nationwide Children’s Hospital in Columbus, Ohio to see Dr. Mark Levitt, the premier surgeon for children with imperforate anus. Kai had a long battery of tests that gave us more information about the state of his anatomy.

We found out that he would have to have surgery on his spinal cord due to fatty filum. We learned that he would need multiple surgeries on his bladder and urinary system, the eventual outcome of which was uncertain. And we learned that the surgeries done on his colorectal tract in China were done poorly, causing permanent and irreversible damage.

This was overwhelming to say the least, and absolutely heartbreaking. I had more than a few anxious moments trying to navigate these new waters.

With the support and guidance of moms who traveled before me, however, we are making our way one step at a time. And, although it all feels important, it no longer feels scary or overwhelming.

In the past three years, he has had six surgeries, three of which occurred out of state. Although the potential for traveling for surgeries seemed daunting, I have found the surgeries to be incredible bonding times for us with our son. It is such a blessing to be able to care for him and love him through these times.

Things like enemas and catheters which once seemed scary to me are now as ordinary as discussing brushing teeth or any other activities of daily living. They are just not a big deal. We need a little extra planning in our daily life, but turns out having a child that needs a little help to use the bathroom did not require a major change in how we live our lives.

It just required our hearts to stretch.

Kai loves monkeys and playing cars. He cries if he has to miss school because he loves going so much. He loves his siblings and cousins with passion. He is full of smiles and laughs and hugs and love.

I would not trade this kid for anything on earth.

We have a big, busy family. Each of my children brings their own set of joys and challenges. I have found Kai’s medical needs to be no different.

What Kai needed most was a family, and what we needed most was him.

Adoption is always a leap of faith. Adopting a child with a scary sounding diagnosis takes this leap to another level. But that leap is so very very worth it!

– guest post by Emily

8 responses to “Adopting Kai: Adjusting to ARM (anorectal malformation)”

  1. Emily says:

    Beautifully written post. Your family is amazing and I am so blessed to call you friend. One of the greatest lessons you teach here is that Kai (and all of us with disabilities) is so much more than his diagnoses or medical needs. Kai is an incredible human being and so are you. Love you.

  2. Joyce Abbott says:

    You and Jeff are amazing parents, and I have enjoyed watching the children grow. Much love and many prayers for the entire family.

  3. Stan Rapp says:

    Your willingness and dedication to adopting Kai is a tribute to the power of a loving heart. Your deeply touching story is sure to inspire so many others thinking about adoption. God bless you and your amazing family.

  4. Erez Katz says:

    Wow — what an incredible touching story.
    Congratulations to both of you, Emily and Jeff. I admire your courage and your selfless drive to make our world better.
    May Kai continue to bring your beautiful family joy as he grows to become an accomplished young man who brings good to society himself.

  5. Ginger Schlanger says:

    I am inspired by your faith and calm! I will now include your family in my prayers, too.

  6. Rachel says:

    I love this – we are about three weeks away from adopting our son with IAA and I’m a little terrified but know in my heart he is ours, so we will take what comes! Thank you for posting your story.

  7. Tony Duda says:

    Just awesome Emily! My love to you and Jeff and your entire family. I wish I was closer to you guys and could see you more often. Thank you for sharing Emily!

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