I just unpacked the last bag from our weekend in Asheville! I think that might be one of the most satisfying chores when it is completed. One of Jake’s friends asked him to be a groomsman, and oh wow was it a beautiful wedding! I will give more details a little further down on this entry.
Our church directory photo came in! I absolutely love it. It may have taken 25 minutes to get a good one, but we are pleased. I was a little sad to see that Malachi’s shirt had drool on it. I had asked them if they would be willing to photoshop that out of the picture, but they said that it would cost us $40 to do, so I took a picture of the picture and did a little two minute editing myself. It may not bother anyone else, but for some reason it is important for me to do these things for Malachi. It has nothing to do with my pride or anything of that nature, but I always want to do my best to treat him with the dignity that he deserves, if that makes sense.
As far as the week went, it was a busy one but as you know, that is our normal. Malachi has been exceptional at horse therapy now that the temperatures are cooling down. He is so much more eager to do what he is asked and hold his body up. He will do almost anything you ask if you shower him with compliments after he completes the task. That is his sole motivation in life…to get compliments! His joy is so contagious.
Tuesday was our most challenging day as he had to be at the hospital at 7:45am for a neurosurgery appointment (routine check up-don’t panic!) That goober stayed up until 3am giving us a very short 3 hour rest before we had to be up and out the door to make it to the hospital on time. Poor little Malachi was exhausted as I tried to rouse him awake to head out the door. If I don’t wake him fully and burp him before he goes into his car seat he will start gagging, coughing, vomiting, and ultimately pooping due the the first three. It took me 15 minutes but I got a good burp out of him and sped out the door. We made it about two miles down the road before he started throwing up leading to the way-too-common gas station parking lot outfit/diaper change.
Needless to say, I was a frazzled mess by the time we made it to the hospital. We registered and then the waiting game began. An hour later we were finally back in a room, and our actual appointment took exactly 4 minutes. “Any changes with Malachi’s shunt?” Nope. “Any new concerns?” Nope. She also asked about his seizures, but since he is followed by neurology (a different specialist) it was more for conversation’s sake. We made our next appointment and were sent on our way. Truthfully, I am thrilled that his neurosurgery appointments are that simple even though they are dreadfully annoying. Malachi’s shunt story could be much more complicated so we are counting our blessings.
It had been awhile since we had been inside the hospital, and again my emotions started to get away from me. I had to mentally block out the hallway as I walked through it, remembering the many times Jake and I had walked it on the way to the NICU. There are just so many memories attached to that building- most of them unpleasant. I could feel myself getting a little off track with my emotions and quickly pulled them together as I headed down the the waiting room.
For some reason, these neurosurgery appointments are exceptionally harder than others. While most of his specialists are pediatric specific, this one is open to all ages so we regularly see adults with disabilities in the waiting area. I have to consciously make an effort to not focus on Malachi’s adult years as thinking about those things causes my system to shut down with worry on how I will be able to care for him. So when I am in a setting surrounded by families that are caring for adults with disabilities I have a REALLY hard time. I sat over to the side and just focused on Malachi but I couldn’t help but hear the conversations between the families.
One mom was proudly telling another that her daughter was now the oldest patient at the Boehm Birth Defects Center (our neurosurgeon), as the previous title holder had recently passed away. The daughter had just celebrated her 51st birthday. I immediately became overcome with emotion as I let my mind wander into Malachi’s future. I know every mom has these worries and fears, but Jake and I have to face the reality that Malachi might be called to be with Jesus sooner than other children. I recently read an article on Cerebral Palsy that probably did more damage than good. Here are a few of the statistics:
- A child of two who cannot walk, feed, or dress themselves and has severe learning difficulties, and is blind has a 2 in 5 chance of reaching the age of 20 years old.
- Of 100 children aged five who cannot walk, feed, or dress themselves, 63 will live to at least the age of 20 and 50 will live to at least the age of 30.
While Malachi’s CP alone does not necessarily affect his life expectancy, there are other factors that contribute significantly, like his epilepsy. These thoughts absolutely cripple me at times, and are a new way the devil has been attacking me.
A few years ago I read an article about a father who had a gravestone specifically designed for his son with disabilities. The boy passed away at the age of ten and was eerily similar to Malachi. This is an picture of his gravestone.
I don’t know that a more powerful gravestone exists. Every time I see this photo (even now) I am overcome with emotion. The father talks in an interview about his son’s fully healed heavenly body, a much needed reminder to me that the pain Malachi experiences on this earth is temporary. Malachi will one day be running on perfectly straight feet. Malachi will embrace me with a big bear hug and hold my hand as we go on walks together. Malachi will be able to hold up that heavy head of his and tell me stories. Malachi will be able to see his world through perfect eyes. And while these thoughts bring me so much joy, there is so so so much pain the tries to block it.
And yes, I am bawling over here right now. That picture…every time.
So moving on to some happier thoughts. Malachi is a ladies man. While he loves to hear all children and babies talk, we are noticing that he has a preference for girl’s voices. He will flash that big smile of his and sometimes giggle when they are near him. And he is an equal opportunity flirter and has even been flirting with the teenage girls on our soccer team. He has a new “move” where he tucks his chin to his chest and cuts his eyes over to them, and then moves his eyebrows. No joke. He raises his eyebrows at them as if to say “Who, me?” I tell you what- he is one silly kid.
While Jake was dealing with wedding festivities, Malachi and I went on a mommy son date to get him some warmer clothes for the season. We ventured into Asheville and found a TJ Maxx to explore, and it is so interesting to me how different areas of the country react to Malachi. The people we encountered seemed almost bothered by his presence, frustrated that he was taking up so much of the aisle. I hate to make assumptions about an entire population, so I didn’t mention it to Jake, but after a lunch outing today on our way home he brought it up to me. He said the same thing that I did, and talked specifically about the staring. Conversations stop, eyes stare, and it feels as if judgment is passed.
I try to hold my head up high in those moments, as it is easy to get self conscious. I was a little bothered after my Saturday shopping trip and headed over to the wedding. There were no handicap spots left and no ramp so I found a remote spot close to the grass, hoping I could manage to push Malachi up there by myself. As I was throwing on his wedding clothes I looked over the see two of Jake’s teaching friends walking towards me. They had seen me pull in and without being asked had come over to offer their help. I breathed a big sigh of thankful relief as they pushed Malachi up the gravel road for me.
That was a moment that I desperately needed. It reminded me of God’s providence as he has placed us in a community that 100% accepts our family as we are. We could be anywhere in the world- or in a community that is not tolerant of Malachi’s differences. But instead God has placed our family in a small town where people love Malachi as much as we do. And to see Malachi’s big grin as he looked over his shoulder at his two buddies pushing him up the grass just warms my heart. That little boy knows what is going on. He knows when people show him kindness. And to hear them talk to Malachi like the three year old that he is was just the refreshing reminder that I needed at the time.
Malachi loved the wedding, although we spent most of the ceremony hiding in a quiet area near the back. He thinks moments of silence are particularly funny and tends to speak up. The reception proved to be a little much for him, so we played it safe and stayed on the outskirts. I took him in to the center of the reception one time to see some friends, but the volume and activity around him sparked his seizures. He had three big ones in a row, and panic set in as I realized that I had not prepared for an incident and all of our towels were back on the outskirts with his chair. We quickly made our exit back to our quiet area!
Here are some photos from our evening! And yes, I sing through my teeth in all pictures with Malachi in an effort to get him to smile.
The bigger Malachi gets, the more difficult weekends like this become. He is definitely taking a toll on my body these days, particularly my back. In addition to him weighing 35 pounds, he wants to wiggle and move making it very difficult to keep a hold of him, as you can see in this picture. But he loved the adventure and it was nice to get out of our routines a bit.
Malachi’s favorite part of the weekend was getting to sleep in the big bed with his daddy. I usually make Malachi sleep in his crib for the first two rounds of sleep, and when Jake leaves in the mornings (and Malachi wakes back up) I put him in my bed with me. We took a portable cot with us this weekend, which was absolutely amazing by the way. It fold up like a portable chair and I was able to keep it in the van to be a portable changing table for Malachi. He slept decently on it at night but eventually ended up in the bed with us. Jake made the mistake of saying something in his sleep and Malachi’s eyes popped open with excitement. Then Jake made another rookie mistake of reacting with an “Owww” when Malachi hit him in the face, trying to figure out where his daddy was laying. GAME ON! Malachi continued to hit Jake in the face for the following ten minutes, and at that point there is no sense in trying to get him calmed back down. He and Jake played and cuddled, with Malachi loving every second of his time with his daddy.
I think I have officially jumped all over the map with stories and topics for this entry. Jake took Malachi when we got home, allowing me to take a two hour nap. My body doesn’t quite know what to do with all of this energy! Thank you for sticking with my randomness.
As far as specific prayer requests, please pray for Malachi’s communication and my wisdom on how to help. He has been so eager to communicate lately and I just lack the knowledge on how to help him. Pray for Malachi’s health to remain strong, as one of our house-guests in Asheville casually shared that he is battling mono. Yikes! This is our first winter without tonsils and we are really hoping that Malachi’s system will be able to fight off illnesses. Also continue to pray that we see more miracles in Malachi’s life….that he would be able to defy statistics and guesses about his future. And that mom and dad would find a peace in whatever God has written out for Malachi’s life.
We love you.
Jake, Leah, and Malachi