Jordan continues to grow into his own little person, daily. His language is one of our favorite pieces of this puzzle. His words have turned into short sentences and his sentences conversation followed by myriad facial expressions.
One of my favorites is “Mom, Mom, I be back. K?” All with his eyebrows raised, eyes wide open, and his hand up and finger pointed. He loves to talk on the phone. Usually it doesn’t matter if there’s someone on the other end or not.
One evening we went to a hotel about an hour and a half away just for time away and to give Jordan a chance to swim in a pool. The pool was great. However Jordan’s favorite activity was picking up and talking on a phone with a cord on it.
He frequently requests to call his “Papa Yinden” to talk about his cows and to make sure they are being fed. He’s in love with “tows and dawgs.” He loves to ask if we need help – whether it be feeding the animals or taking care of his sister.
He’s become a pretty fast crawler around the house. It’s great he’s able to get himself around by crawling, and if furniture is available, he cruises around, preferably in his short braces. When we have the opportunity, we get his walker out to allow him to get where he needs to go with his wheels.
His AFOs are the taller braces that allow him to stand taller, but we don’t allow him to crawl in them. He appears to be the average 2 year old and walks when he wants to walk and requests to be carried when he wants to be carried.
While my dad was away on a mission trip to assist building a church in Liberia, Africa, the time came to celebrate my parents’ 40th anniversary. Prior to leaving for his trip he pre-recorded sending a message and singing along with George Strait’s “I cross my heart” to be played to her during our church service. He requested that Jordan and our nephew walk down the aisle with a dozen roses.
After some brain storming we decided to give each boy 6 roses a piece and have them delivered. Jordan was equipped with a backpack with his roses as they ventured down the aisle. It was hard to hold back tears seeing him motor down with his walker, and as he approached my mom, he pointed to his backpack for her to receive her flowers. Something about his determination causes our hearts to swell with pride.
As we’ve observed his walking, Jordan’s right leg has continued to show weakness and turns to the side. The concern we’ve discussed is keeping the integrity of his knee. One of our obstacles is the heavy bracing for a leg that is not as strong.
As we discussed our cause for concern at our Myelo Clinic day, we had a gut feeling we were going to be faced with a new strategy to assist Jordan with his walking. Sure enough, as we expected, Dr. Baird, Dr. Jones, Judy and Sandy our physical therapists, and Brian, our orthotist, collaborated to conclude a higher brace should be constructed to assist Jordan’s right leg.
Dr. Baird also brought the idea to the table to start looking into getting a wheelchair for Jordan to assist him with longer distances. If we would have been approached initially when we heard our son was diagnosed with spina bifida we would have been crushed.
And to be totally honest it isn’t an easy conversation or thought. However when we think about it, we’ve been Jordan’s wheels for the past 2 ½ years.
As he continues to grow, carrying him around is becoming more difficult. Currently he is showing limited time in his walker. When we do take it with us, we end up having to carry it when he becomes fatigued.
However, we truly feel that God has been preparing us for this chapter of our journey. We attended the Myelo Clinic Holiday party. This was our first year of attendance. We enjoyed meeting other families and spending the time together as a family.
One of our new heroes in attendance was Casey. His family has proven to be his advocate, allowing him to participate in athletic events. If there is a time to allow our kids to be kids it’s now. Many schools are willing to look into including kids that have special needs.
Jordan, like other kids, enjoys watching sports and participating. We were given hope while talking with Casey and his family. They introduced us to an adaptive sports program in Wooster.
They have sled hockey, track and a swimming program. We are excited for Jordan to have the opportunity to choose to participate in sports instead of feeling that he always needs to be a spectator because of how God created him.
We also observed a sweet, beautiful little girl while in the waiting room at Myelo Clinic who wheeled herself into the clinic, then got up and walked with her walker. Sure it isn’t what anyone dreams of or a challenge, but it’s doable. It’s not a sentence to be lonely because of being in a chair.
It’s all a process and little by little Jordan continues to teach us how life can throw challenges. But if you smile and keep focusing on the good in life – like dogs, cookies, faith and family – that’s all that really makes life good.
Read more about Megs and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.