When Jesse had his 9-month check-up at the pediatrician’s office he still wasn’t rolling over or meeting many of the other milestones for his age. In the office I filled out a questionnaire to help the doctor gauge where Jesse was developmentally. I was supposed to stop after reaching three “no’s”. ‘No’ my child does not raise his head, ‘no’ he does not attempt to roll over, ‘no’ he does not love tummy time. You would think after babysitting kids since I was twelve that I would have a pretty good idea what milestones should be expected by 9-months of age, but I had no clue. I just thought Jesse had a laid back personality. He was content lying on his back on the play mat, swatting at the dangling ball in front of him.
At the check-up his pediatrician recommended we look into Early Intervention services as well as set up an appointment with a neurologist. The next month there was an in-home visit to see if Jesse qualified for therapy through EI. He was admitted after the evaluation, which led the way for physical therapy and occupational therapy. We learned a few months later from the visit with a neurologist in town that Jesse was a “floppy baby”, meaning he was born with low muscle tone. He would have to work harder in order to make his muscles work. Nothing came easily for him.
Jason and I were grateful for his therapy appointments. I learned a lot, as the therapists gave me homework. I worked with Jesse during the week with the exercises they gave me to do. Jason also helped in the evenings after he got home from work. Together we taught him how to stabilize on his hands and knees, how to crawl, literally moving his little body for him until he got it. We worked with him on pulling up and encouraged Jesse to “cruise” from couch to couch. These are things most parents take for granted. Their child will just naturally reach those milestones with minimal interference or help. We really worked for it, alternately practicing and praising him for his hard work. At times I felt like a solider in the Army or something with the phrase, “Motherhood: The toughest job you’ll ever love” going over and over in my head. I think it was my version of a pep talk to keep going and not give up on him.
When Jesse was 21-months he still was not walking, he just crawled everywhere and man did he get heavy! My daily workout consisted of just lifting him a thousand times a day. By mid-January of 2013 I was able to take him to outpatient physical therapy where he was harnessed to a treadmill so he could practice the sensation of walking. Like with everything else, I hoped the “walking” would help strengthen his muscles and just make everything click so he could do it on his own. This went on for about 6-8 weeks, driving to appointments, while practicing at home with a walker. He did great with the walker, and we cheered him on as he had to do the really hard work all by himself. I’m tearing up as I write this because I remember my mama heart breaking during this season, as I watched him put one leg in front of the other, over and over. I wanted so much to just do it for him, but I couldn’t. Isn’t that what we do as parents sometimes? We want for them to crawl, walk, talk, potty train, ride a bike, and tie their shoes on their own, while thinking, “if I could just do it for them”. It is part of the growing up process, which can be frustrating and joyous for both parent and child.
But then the best part happened in March of 2013. Weeks before his 2nd birthday Jesse learned to walk. That alone was cause for celebration in our home. It was a momentous occasion and we praised God for a wonderful blessing.
Sometimes I would get sad or bitter every time Jesse had a therapy appointment because it was a reminder that our family was “different”. Those are feelings I’m not necessarily proud of, but they are there. I just wanted everything to come easily for Jesse, like it did for other kids. But when I see the faces of the special needs parents at the therapy center, I know why we were placed in this situation. We are in a club that no one wants to be in. I see the tiredness, sadness, and longing to help their child because I’m there too.
When I look at Scripture I see part of the reason why any of us go through trials. It is to comfort others. “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God” (2 Corinthians 1:3-4 NIV). When we go through those hard seasons it is somehow comforting to hear another say, “Me too, I’ve been there”. It helps us feel like we are not completely alone when someone understands our pain and empathizes. The veterans can maybe help the newbies navigate the turbulent waters, offering wisdom, love, and prayer.
Only another special needs parent can understand what life is like for me. Family and friends definitely offer their support and love, but they cannot quite understand. This became so clear to me one day after I dropped Jesse off to his classroom at school one morning. I was particularly discouraged that day, exhausted from Jesse’s seemingly endless sleepless nights. I ran into the assistant principal, Ms. Thomas, in the hallway who is wonderful at her job. She always encourages the kids as they trot to class, has a smile on her face, and a positive attitude whenever I see her. She asked me how Jesse was doing and perhaps by my limp response or half zombie-like appearance, she gently starts telling me about her 3 children. Ms. Thomas has one child that is special needs. I didn’t know this. She says that God had a purpose in giving her a special needs child, because if she didn’t have him, she would never be able to understand what I am going through. (Cue the tears!). Then she reminds me of the story in John 9 where the disciples ask Jesus if the blind man is blind because of his sin or his parents’ sin. The Lord’s response takes my breath away every time. He says that it is neither because of his sin or his parents’ sin, but “so that the work of God might be displayed in his life” (John 9:3 NIV)! Okay, by this point I’m choking back tears as hard as I can so I don’t ugly cry right in the school hallway. Ms. Thomas reminded me that Jesse is a gift that God is using for His glory in a very specific way. Truth be told, I’ve already seen how my little guy blesses others. Every where we go he waves at strangers, followed by a very cheerful “hi!”. I see him brighten up strangers’ faces every day. I don’t know if Ms. Thomas even realizes it, but that meeting in the hallway impacted me and greatly encouraged my weary spirit. She acted as the hands and feet of the Church in that moment. That is what we do as a body of believers when we comfort, encourage, love, and pray for one another, carrying each other’s burdens, as well as sharing in our joys.
Hardship helps us connect in our humanity, revealing our weakness and inability to control things. That is when we can hopefully lean on others and trust in the Lord for help. The moments, or years of testing will either bring us closer to the Potter’s Hand or harden our hearts in anger. I admit I yo-yo back and forth sometimes, feeling spiritually depleted. But even in those moments there is grace. There is grace for the weary because the Lord “will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths will grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint” (Isaiah 40:28-31 NIV). Praise God!
Grace upon grace,