I think I can sum up our week with a single picture:
Dennis the Menace has taken over my child! Malachi has been extra silly this week and has kept me on my toes. This picture was taken after mommy turned her back for 10 seconds to wash her hands. And yes, he thought it was absolutely hilarious! This week he also started stiffening his body when I try to put him in his car seat and giggled the wildest little laugh each time I tried effortlessly to fold him into his seat.
While at times it can be frustrating, it still brings me joy to see him trying to express himself. It is also fun to see his sense of humor shining through.
The emotional pendulum has been swinging pretty heavily this week, and I there isn’t really a specific nemesis to blame. I have had a difficult week and shed some tears…some warranted, and some just plain silly.
These days to-do lists are at a maximum daily and it seems every waking hour is allotted to multiple tasks. One of the tasks on our list was fixing Malachi’s wheelchair to accommodate his new abilities (in particular his beautifully bending knees). If you were around for that journey back in December 2015 you will remember that Malachi needed a wheelchair but was too small for most options. Since his knees were not bending at the time, we decided to “long sit” him in his chair in order to get him in the most suitable seating system for his (and our) needs a little quicker.
With medication changes and some major growth we decided that he was now ready for some chair repair! I called our Durable Medical Equipment Provider (abbreviated DME) and they returned my call last week to tell me that they were no longer accepting his insurance. This was DEVASTATING news as we have a wonderful relationship with this DME. They have been instrumental in getting Malachi his wheelchair, activity chair, bath chair, and stander. They take so much of the work from my plate by contacting doctors and therapists on our behalf. There is also a peace in knowing that they understand Malachi and his needs.
They agreed to meet with me one final time to talk about the changes that another DME would have to do to the chair, so on Thursday we made the drive. I was beyond grateful when they told me they were going to fix Malachi’s chair at their expense and make sure he was set before closing his file. His chair is currently in the repair shop and I am so excited to see those little knees bending like a big boy.
Before I knew they were going to work on his chair I made some calls to insurance to discuss some new DME options in our area. After the first 30 minutes on hold the call was dropped. The second round took over 30 minutes more as I was transferred from the medical insurance provider to the pharmacy benefits provider, each claiming that they were not responsible for that aspect of Malachi’s insurance. Round 3 took even longer and after successfully getting both companies on a three way call to discuss this chaos together I was told very rudely that I was not privileged to that information. They told me that I would need to get a doctor to write a prescription then fax it to them and then they would approve or deny it, then call and tell me which company to call.
At this point I felt so disrespected as a human, alone as a special needs mom, and I still had no solution for my son. I don’t quite understand why, but that combo hit me like a ton of bricks and the tears started flowing and couldn’t stop. Sometimes I get tired of the fight. Daily I am given tasks as a caretaker that many parents don’t have to think twice about, and these extra hoops just sting. It is very difficult to be able to sit back and enjoy being a parent when so much responsibility rests on your shoulders.
The tears dried up and life moved on. Boy did we knock out some major tasks this week!
Malachi has been so interested in food, and we really seem to be turning a corner with his oral sensitivities. I turned the big 3-1 on Monday and we celebrated that evening by cashing in a free birthday meal at our favorite restaurant. They brought out a small brownie with peanut butter icing and a scoop of vanilla on top and I let Malachi have a bite…oh boy was he overjoyed! He ate more than I did!
Also this week we had a mommy/Malachi date at Panera in between therapy appointments, and he polished off half a bowl of broccoli cheddar soup! Even a month ago he did not tolerate foods that weren’t room temperature so this is a huge step in the right direction for him to be able to do both warm and cold foods in the same week.
Another round of frustration hit me yesterday, and going into detail would not be very beneficial so I will keep it broad. But the whole ordeal has reminded me how unnatural it feels to be selfless.
Philippians 2:3-5 says: “Do nothing from selfishness or empty conceit, but with humility of mind regard one another as more important than yourselves; do not merely look out for your own personal interests, but also for the interests of others. Have this attitude in yourselves which was also in Christ Jesus.”
I don’t know about you, but this challenge is not an easy one for me to accept. But Christianity isn’t meant to be an easy calling.
Being Malachi’s mom already seems to pop me into the “selfless” category in the minds of others. I hear that word used often to describe my life, and if we define the word with the guidelines this verse lays out I guess I do default into that category…in order for Malachi to continue to live I MUST regard him as more important than myself and look out for his interest.
But I don’t want to default into that adjective. I want to earn that title. And to do so means I have to make an effort to show this selflessness to people that aren’t easy to love. Over the last few weeks I have been working on this, and I am embarrassed to admit that some of my frustrations this week are attributed to feeling of being taken for granted.
It sounds funny when I really think about it…to get mad for people not recognizing my selfless acts, but isn’t that the route our human nature tries to take us? To a world that revolves around us and our needs?
I guess that I am trying to say is that selflessness is something that I need to write on my white board to-do list daily. And while for some it may be easy, don’t be surprised if your ego gets involved (like mine) and tries to talk you out of the selfless mindset.
I hope that when I stand before God the word “selfless” will come to His lips….and not to describe the way I cared for Malachi, but the way I cared for others…especially the least deserving. Because earning that title would mean that daily I chose to die to myself and to live as Christ as we have been called to do.
Thank you for continuing to keep Malachi in your prayers. The hedge of protection you are praying over him brings us peace as a family, and we are honored that you carry this cross with us.
May God bless you,
Jake, Leah, and Malachi