This week has been full of fun moments with Malachi. We started the week of with a GREAT hippotherapy session with a new horse named Norton. Malachi has made such amazing progress with his weekly riding sessions and we couldn’t be happier.
After the session we headed to the Wal-Mart to pick up bulk supplies for our soccer banquet that evening. I am pretty sure I made a vow about a month ago that I would never go in there again, yet here we were…cruising the aisles and avoiding stares. There is no place quite like the Wal-Mart when it comes to variety of people. Last month’s trip ended with the cashier asking “So what’s wrong with your son?” And this trip we were stopped by an elderly woman who was comparing Malachi to a great grandson that she had with special needs. She kept referring to them by saying “Aren’t they just so pitiful?”. Each time she used the word pitiful (about a dozen times), she looked for me to nod in agreement with her. Instead I just smiled and thanked her for sharing her great grandson’s story with me. It is so difficult to not get my feelings hurt in these situations…I simply what the world to see Malachi for the blessing that he is.
After a busy Tuesday, we did make it to the polls to vote!
Malachi’s sleep habits are still pretty atrocious. A few weeks back when we visited with the neurologist I asked him about medications that could help calm his mind at night. He prescribed a med that is used in adults for another purpose, but have been known to help neurological kids in low doses. I filled the prescription but just couldn’t get a peace about “drugging” my son simply for sleep.
Wednesday rolled around and I was desperate for more than 6 hours of pieced together sleep so we put a few drops in his bottle. Within 30 minutes he was out like a light! He still woke up twice but instead of staying awake for 2 hours, it was only 30 minutes each time. We pieced together a full 8 hours and I was feeling great! But unfortunately the effects of the medicine stayed in him for longer than expected and he was acting like he had a hangover even until dinnertime. As I looked at his carefree and emotionless face that day I felt so guilty that I had given him the med. We may try again in desperate situations, and possibly try fiddling with the dosage but I don’t know that I want to do that again anytime soon.
I have been trying to make Malachi lay down in the bed with me for random naps throughout the day. It worked one time, and by golly it is bound to work again, right?!? He thinks it is absolutely hilarious that we lay down and get quiet and just can’t help but fill the silence with silly squeals. I ignore them so he proceeds to try to hit me in the face to make sure I am still awake. I take the blows like a champ, hoping he will give up, which he eventually does. But then he moves on to his next “move”…licking me on the nose. It inevitably freaks me out every single time and he gets the reaction he is looking for…eyes wide open and a shriek from me…and then he just laughs and laughs and I give up and try again another day. Crazy kid.
Jake and I have been trying to step out of our comfort zone lately and allow Malachi to go to the church nursery when no other kids are in there for the evening. We got this cute video of him singing songs from Wednesday.
Friday we went on a family date to see a Christian comedian named Tim Hawkins! It felt good to laugh! We often hesitate to take Malachi to events like these for multiple reasons, but the main two being crowds and seizures. Luckily we had some very kind friends save some seats for us eliminating one of those worries. As for seizures, Malachi only had three and they were very brief. The loud music got to him a bit at first, but after he adjusted to he was okay.
Saturday the family fun continued as we headed to the zoo to meet our twin buddies, Braden and Thatcher. If you are new to the blog, their mother Lauren and I met at one of the neurosurgeon appointments about a year ago and connected immediately. The boys are about a year younger than Malachi and one of them also has CP. Spending time with them is so refreshing and Saturday was no exception. Malachi was able to ride a camel, pet some goats, and even get snubbed by a chimp. He giggled like a wild man at the macaws and really seemed to enjoy the visit.
And here is a video of the less-than-amused chimp:
Malachi continues to try new foods. Yesterday Jake was eating a bag of chips and Malachi heard the crunching. I offered him some baby food, which he quickly spit out. He continued to ask for bites with his body language so we got out his “crunchies” and I gave them to Jake to try with Malachi. Bingo! He wanted to eat what his daddy had, and when he heard him crunching he decided he wanted to crunch like daddy. He is so expressive these days with his communication!
After church this afternoon we headed to a local restaurant called the Dam Deli. We absolutely love the place and are good friends with the owners. In fact, I remember being in the hospital bed two days after having Malachi and one of the owners and her children came by for a visit. Aside from eating frequently at their restaurant, we had not interacted with them, so it actually made me laugh when they came for a visit. I told Jake “You know that you eat at a place too much when the owners drive an hour to visit you in the hospital.” But all joking aside, they are wonderful people and now that we have gotten to know them, this act of kindness doesn’t seem out of line with their character. They are good people.
Okay, so back on track! I often tell you about times when someone secretly pays for our meals when we are out in public. The last 5 times we have been at the deli this very thing has happened, each time bringing us to tears. The owner told me “I have never seen anything like this!” Almost every time it is done by someone we do not know, and they leave before we are told. These random acts of kindness are so touching, and today’s was no exception.
As we finished up our meal, a gentleman came over to our table who had been sitting alone behind us. He said “I don’t want to interrupt, but I just wanted to tell you all how much you impacted me today with the love you have shown your son. I appreciate the love that you give him, and I admire you very much as parents.” He then handed us an envelope and explained that he had tried to pay for our meal but someone else had already done so. Inside was a gift certificate so we could enjoy another meal out together as a family.
At this point I was obviously crying and we thanked him for his encouragement and gift. We made small talk with the man and found out that he is a probate judge in Georgia and just happened to be cruising through on his motorcycle. We were able to share a little bit of Malachi’s testimony with him and explained that he was a blessing to our family. God is so good.
As we drove home Jake and I talked about what had happened. We have never been the type of couple that likes to be the center of attention. Yet God gave us a three year old in a neon green wheelchair that turns heads wherever he goes. Whether we like it or not, we are seen…and watched closely.
We talked about how amazing it was that God gave us Malachi- an amazing example of the love of Christ. Not only do we get to see unconditional love in his eyes like the love of the Father, but we also get to practice being imitators of Christ as his parents. Daily we are required to lay down our desires and selfish needs and instead put someone else before us. I don’t know that many Christians get the same opportunity that we do to daily bear the burdens of another. God is using Malachi to teach Jake and I so much about the selflessness of Christ. He is also using Malachi to teach the world about the mysterious yet great ways of God.
Yes, we have days of very un-Christlike behavior; anger towards Malachi for things he cannot control, curse words when things don’t go as planned, verbal retorts to offensive questions from strangers. But amidst those moments are ones where we get to see the lessons of Christ firsthand. Malachi is a blessing.
Please keep Malachi in your prayers this week. He has had a bad day for seizures, having several big ones today. When this happens, we hold our breath as we try to figure out the cause. It could be constipation, upset tummy, or a sickness coming on. Please pray that we find our answer quickly and that it is an easy fix.
Jake, Leah, and Malachi
2 thoughts on “Camel Rides and Compliments”
I do so enjoy reading your updates on your family’s journey. As the gentleman watched at a distance, the way you interacted with Malachi, so do I on many occasions. It is impressive how you continue your work serving the Lord, when so many of us would feel that we should step back and let others take our place. Your honesty in your writings demonstrate that being humble, swallowing your pride when you admit your thoughts and actions that some would deem as wrong, and how you even have moments when you question God, only serve to encourage me in matters I may be dealing with. Jake and you have faced seemingly insurmountable issues, but it is a wonder to behold to see God’s hands all over the situations. Thank you for writing your blog so that I can witness someone who truly must depend on God. And watch as God shows His love and grace in so many ways. Malachi is probably the friendliest and happiest child I know. What a blessing he is! Love all three of you!
We’ve been following your blog for about a month, recommended by a couple from our church, Dortha and Alan. They are snowbirds. You are acquainted with them.
We have a beautiful 8 yr old grandson, born with a severe form of Spina bifida that limits his mobility and dexterity. He has Chiari malformation and a shunt. He has had five major surgeries from head to toe, external and internal, each improving his health or functioning. He was diagnosed in the autism spectrum at age two. He was a late talker but loved music. He learned to sing in his fashion, and eventually learned words from his songs. He watched Leap Frog language videos for years, and became fascinated by letters, words, and sounds. He now is a fluent, expressive reader. He can communicate his needs, but is not yet what you’d call conversational with others. Two weeks ago a home visitor asked how his school day was. He responded, “Pretty good.” His Mom and I nearly fell over. We were so excited, and he thrives on praise for his accomplishments.
In NY a spina bifida birth is immediately registered with the state. Once he went home after five weeks of neonatal intensive care, he was visited regularly by occupational and physical therapists, a social worker and others. At age two he began a developmental education program at a local facility operated by United Cerebral Palsy. He has friends with CP, including a quiet and sad girl on his bus. He began to sing to her, and she began to smile. They found a way to communicate. I can’t praise this program enough. He thrived there, and they still inquire about him. He loved and trusted all his teachers, aides and therapists. Some have told us they were inspired by him, and were glad for their choice of occupation.
He is now in third grade at a special education school that serves many school districts. He gets his PT and OT, speech therapy, music therapy, adaptive physical education and counseling. He is in an academic program with other students with autism., none of whom are physically impaired. The other choice was a life skills program that did not lead to a high school diploma. He has his own aide, who helps him with personal care, and also his schoolwork.
While Malachi’s story is different from our grandson’s, there are many experiences we’ve shared, including the curiosity of strangers. We answer them factually, and let them know he is the light and love of our life. Nobody should feel sorry for us (and he’s certainly not pitiful). We encourage our church family to speak with him directly, and have suggested they give him some extra time to process language. He may or may not respond, but he’s very delighted they tried. He now recognizes and will engage with our pastor, his wife, and various others.
We have been enormously blessed by others who are living “the new normal.”
They are understanding and generous with aspects of their story when they think it might help.
I look forward to Sunday night to learn how Malachi’s and your week have gone. Reading your Christian testimony about your life, joys and challenges is a true blessing. Thank you for your generosity in sharing!