Ten Fingers. Five Toes.

July 21, 2018 adopting a boy, adopting two at once, amniotic band syndrome, amputation, June 2018 Feature - Orthopedic, limb difference, missing arm/leg, Orthopedic, prosthetics 6 Comments

It’s summer, and time to celebrate one of my very favorite days… my “youngest little’s” birthday! I am the mama to four amazing, yet very different boys, and I relish celebrating everything about these sweet souls. Especially this little guy – Johnny.

This is Johnny-Cake’s second birthday home, and I am forever humbled that God chose us to be his forever tribe. The magnitude of that gift always takes me back to the first day I saw his endearing little face, and I just knew, he was ours!

It was only a few short years ago, in the spring of 2015, that I was combing through our agency’s waiting child list and came across a picture of the most precious little boy! His eyes were bright, and he had a happy, yet mischievous smile that lit up the entire photograph. He was also young, with what appeared to be a minor special need, at least to us. Johnny is a limb difference kiddo and is missing his left leg. There he sat, in blue jean overalls, staring back at me with the cutest grin I’d ever seen! It was right then and there that I knew he was ours, and we were his, and in God’s perfect timing, that wish came true!

With bold faith and trusting hearts, we had just signed up for the greatest adventure of our lives… we were taking a giant leap of faith and adopting from China! We were also planning on adding not one, but two little boys to our growing family. Having already found our “oldest little”, we were in search of another little man, when Johnny popped up out of the blue!

It’s always truly amazing to me how God orchestrates each and every adoption story. His perfect timing and assurance that He knows best always shines through in the end, no matter how truly challenging the road is. As I think back over the long road that we’ve traveled I realize now, more than ever, how God so intricately has woven our two boys’ stories together, and it always restores my faith that when we “let go, and let God”, things always turn out exactly the way they were meant to.

I had been praying over our oldest little for the previous two years before we were able to officially adopt. Time and time again, we would be met with obstacles that would keep us from moving forward. I know now that, had we been able to proceed, we would have missed out on adopting Johnny.

Initially, moving forward to adopt both boys would prove to be quite an arduous task. Aside from what seemed like a maze of distracting other obstacles, when I first inquired about Johnny, a family had already requested his file. In the adoption world, families can request a waiting child’s file for an allotted period of time. During this time, the family has the opportunity to research and seek medical advice about the child they are interested in adopting. Our sweet boy had a family doing just that! My heart sank, but I quickly reminded myself that God had this, and all I needed to do was to hand over my fear and worries to Him, and He would take it from there.

Our agency explained to me that they were expecting to hear back from the reviewing family on the following Monday morning. I prayed my heart out that weekend. Yet, having experienced the ups and downs of the adoption roller coaster ride, I knew anything was possible. Honestly, my hope was just a shallow glimmer.

Come early Monday morning, my heart practically jumped out of my chest as we were given the news that the previous family had declined Johnny’s file, and graciously asked for it to be passed to the next family… us!

Since then, life with our little guy has been nothing short of amazing – and a huge learning curve for all of us.

When we first arrived home, we set up an appointment with a pediatric orthopedic surgeon at Shriner’s Hospital, in Chicago, so that we could get a clearer picture of what Johnny’s needs might be. The doctor explained that Johnny’s limb difference appeared to be from amniotic band syndrome, which is caused in utero when strands of the amniotic sac separate and entangle digits, limbs, or other parts of the fetus, and that he would greatly benefit from the use of a prosthetic.

Three months after we arrived home, Johnny was fitted and received his first prosthetic leg. We also began working with physical therapists, which would eventually prove to be the key component in Johnny’s quest to learn how to manipulate and maneuver his leg. It would be this intense therapy that would really come full circle, as Johnny grew more accustomed to wearing his leg, and was eventually properly fitted.

One thing that I would like to stress to parents considering or parenting this need is this: don’t be afraid to change therapists or prosthetists. While there are so many wonderful people who are very dedicated to this profession, you will need to find a therapist and prosthetist that works for your child, which might take a few tries. And that is ok!

In our case, I could tell that our initial physical therapist didn’t have a lot of experience working with limb difference kiddos or prosthetics, and Johnny hated going to therapy. So, after looking further, we were beyond blessed to find a team of physical therapists who have been nothing short of amazing. Therapy all of a sudden became fun for Johnny, and he absolutely loved going, and continues to look forward to it every week.

Through interactive play, our therapists make therapy fun and engaging and, most of all, they love on him. Given that he was a child who had spent the first two years of his life in an orphanage, it was difficult for him to trust, but sweet Susanna and Lindsey (our therapists) didn’t give up. And, over time, he came to trust and love them; they are such an important part of his tribe!

This same rule is true when finding a prosthetist. Being new to learning about limb differences and prosthetics, I will tell you that I did not realize how significant small, subtle changes are. One small change can make all the difference in a person’s gait, one small manipulation of the prosthetic can make all the difference in a person’s comfort.

By sheer coincidence, we were led to another prosthetist through a little friend of ours who is a limb difference kiddo too. Her mom kindly shared information about their experience, and prompted us to see if we could get an appointment. Since our physical therapists worked with this little girl and our Johnny, they gladly connected us, and we were in!

The first visit to see David Rotter, our new prosthetist, was a turning point in Johnny’s life as a limb difference kiddo. While Johnny was wearing his leg for short periods of time, he would not wear it all the time – he did not seem to make the connection that his leg was a formative part of himself. Moreover, it appeared that it felt like more of a bother to him than something that gave him confidence and independence.

But after just one visit to see David, things changed dramatically. Johnny went from wearing his leg a half hour a day to wearing it full time, every day. With the proper adjustments and manipulations to Johnny’s prosthetic, it completely changed the way Johnny was able to maneuver his leg and move about more freely.

He also loved the “look” of his new leg, which we think changed his mindset about how he saw his prosthetic. David had taken off the foam covering of the prosthetic to work on it, thus leaving the prosthetic open to show the colorful bearings of the working leg. When David sat down to ask Johnny if he wanted the cover placed back on, he immediately answered with a strong “no”, and said he wanted the “robot leg”… and that is what his leg has been known as ever since!

I cannot say enough about how wonderful David has been for not only Johnny, but so many countless other people with limb differences. Not only were we lucky enough to work with one of the top prosthetists in the country, we were able to meet someone who is truly a pioneer in the prosthetic world, and one of the kindest, most giving individuals I’ve ever met.

Find your tribe of these remarkable people, and the blessings bestowed upon you and your child will be endless!

Moving forward, the sky will be the limit for this sweet boy.

Now home almost two years, Johnny has come to understand the love and serenity of having a family. He’s building his tribe of people who are “building him up”, and will be there to see him succeed as the years pass and he ventures out to take on the world. In China children with disabilities, especially limb differences, are often deemed unfit for society. In reality, nothing could be further from the truth.

The moment I first saw Johnny’s face, the one thing that I will never forget is the absolute feeling of strength that overcame me as I looked into his eyes. He was a fighter, with a relentless determination to overcome whatever obstacle might stand between him and where he wanted to go. His videos showed his ability to overcome, conquer and harness a disability that would leave many discouraged and afraid to try, and his cheery smile and dancing eyes revealed his funny personality and silly disposition. It has been pure joy to accept this child as our son, and we are constantly humbled by this mighty little warrior who teaches us so much.

This fall Johnny will attend preschool, and will be able to run, jump, climb and participate in things that he may never had the opportunity to know had he remained an orphan. He proudly wears his “robot leg” and will show anyone interested just how it helps him to go fast. When he falls, as we all do in life, he immediately gets up and says, “Try again!” and off he goes never giving his stumble a second thought. He does not know the meaning of “I can’t,” but reminds all of us every day that he can!

If you have ever considered adopting a limb difference kiddo, I can honestly attest that these children are simply some of the most amazing souls you will ever encounter. These children are no different than any other child, and if given the chance, they will surpass your expectations every time.

I am constantly amazed by our son’s unwavering determination, resilience, and the ability to see the world as though he is no different than any other child his age.

He wants to play, to love, to learn, and to do all the things that every four year old little boy wants to do, and the best part is, he thinks he can, so he does! “Try… try again!”

Words to live by…

– guest post by Angie

6 responses to “Ten Fingers. Five Toes.”

  1. Lindsay Ward says:

    Thank you for sharing. In the first photo with the blue jean overalls, my son was wearing the same overalls in the first picture I ever saw of him at referral. They are about the same age too. My son turned 4 at the end of April this year. We adopted him in 2015.

  2. Linda Pennell says:

    That was beautiful and so well written! You are amazing! I sure miss seeing you and would love to meet your boys,

  3. Kathy Junk says:

    Oh Angie – I had forgotten that very first picture we had posted of Johnny – so precious! And then the real joy to actually meet you in China while picking Johnny and Leo up. Your family is a joy to work with and we truly love you!!

  4. Donna Grennan says:

    That is such an amazing,heartfelt story. Thanks for sharing! Those boys are so lucky to have you in their lives.❤️

  5. Marcia Andersen says:

    You are truly a servant of God! And your little angel is so fortunate to have parents like you! May God bless you and your family!

  6. Pam Gascoigne says:

    Your story is such a beautiful one. I am sure your derp love for Johnny and seeing his determination and new-found happiness is what has given you the energy and stamina to deal with the daily challenges that arise. I am so happy for you and your expanded family!

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