Malachi’s mysterious symptoms from last week dissipated relatively quickly. His fever stayed away, and in fact his body temperature continued to drop- something that is very common with Malachi. When his fever breaks, his body has a hard time finding normal again so we quickly transitioned from diaper only to sweatshirts and toboggans until it settled back in the 98 degree range. He has had some drainage this week, but nothing a little Claritin can’t help.
Here is a little video for you. He was listening to one of his cerebral palsy buddies say his ABCs. He is getting so much better with his alphabet and this week alone he accurately said his H, I, L, and O.
As a precaution, we cancelled his appointments on Monday and hunkered down in the cabin. When Malachi feels crummy he just wants to snuggle, and that was fine with me! We were able to work on table foods and other things that tend to get neglected on busy days.
On a related note- there is so much guilt that comes with being a special needs mom. I sit in appointments every week where therapists and professionals give me a laundry list of things to do at home to help Malachi’s ___________ improve…feeding, core strength, head control, verbal language, receptive language, vision, hearing, fine motor skills, hip sockets, cognitive speed, and sooo many more. I always nod and smile, with the best of intentions to do everything in my power to complete these tasks. And then I get home after a physically and mentally exhausting day to see piles of laundry and dishes that have to get done, in addition to keeping Malachi fed, happy, and seizure free. By the time I do sit down, my body screams “THANK YOU” and that homework list is far from my mind.
It is hard to know that there are things I could be doing to help Malachi improve, and admit that I am not doing them. But I also have to remember that if I am clinically insane then I won’t be there to help him at all, and that makes me feel better about my 30 minute comatose state in the recliner each day. I am hoping that one day I will be able to have the energy to incorporate all of his homework assignments into our routine.
And since we are on a rabbit trail, why not take another detour? As you may know, our family does not participate in Halloween. I was very sensitive to “dark” things as a child- so much so that Snow White and 101 Dalmatians gave me nightmares for weeks! We don’t know how much Malachi comprehends, but I am always cautious as I don’t know if he will be the same sensitivity as me. But I do want to share a photo with you from some of Malachi’s online CP buddies. Their costumes this year impressed me so much that I wanted to share them with you! How awesome are these?!?!
After our recovery day Monday with no temperature issues, I felt like we could resume normalcy on Tuesday. We went to music class and spent some time with family. Wednesday was therapy day (aka guilt trip day haha) followed by a meeting at the house with a local agency that helps kids like Malachi. They will cover things that insurance denies if we follow certain protocols, so we make sure to stay current with them!
In addition to so many other boring tasks this week, we had five showings for the house. And let me tell you…this whole “showing” process is rough! I think it would be exciting and fun if our home/life wasn’t so complicated. Typically we will get a few hours notice when an agent wants to bring potential buyers in. I have a checklist of things that we do quickly, like cleaning the counters, hiding dirty clothes in the washer, scrubbing toilets, and vacuuming. But then there is the medical side of things like hiding medications and somehow “organizing” our many special needs devices and chairs in our home.
After the checklist is finished, we load up Malachi and our dog (requiring we drive two separate cars) and head out to kill time for the scheduled hour. Our go-to spot has been up at our church where there is a fenced playground area.
Who knew selling a home was so complicated!?! We aren’t daunted though. It is worth every effort to get Malachi into a home just for him.
This weekend was particularly special as Jake was asked to preach at our church. He was cool as a cucumber until yesterday when panic set in, but he did wonderful! Here is a link to his sermon if you want to listen (it is about 20 minutes long): https://www.youtube.com/watch?v=VSDmCae9uH8
We have appreciated all the kind and encouraging comments concerning Gunner. She is definitely missed by all of us. I was actually looking through pictures this evening and stumbled on this one. She was definitely one of Malachi’s best friends.
I just did the “Great Calendar Switch” as we like to call it around here. We have a giant whiteboard calendar on the wall that gets updated at the beginning of every month. I write all of our medical and social appointments on it and then get depressed a little when there are only 3 or 4 blank days a month. This week will be a busy one- maybe that’s why God gave us an average one last week with a whole snuggle day built in!
This week I have been thinking a lot about Malachi’s story. It is impossible to look at his testimony and not see God’s hand all over it.
The Bible tells us that God causes all things to work together for good to those who love God, to those who are called according to His purpose (Romans 8:28).
It is very difficult to accept pity from strangers. When I get those looks, every ounce of me wants the time to sit them down and explain what a blessing Malachi is. I want to tell them about the ways God has used Malachi to change my faith. I want to share with them the goodness of God through the things He has done for our family. Through Malachi we see firsthand the meaning of unconditional love. Not to mention, the joy of the Lord!
God has worked things together for good in our lives. We are very blessed. Challenged daily, but blessed.
Thank you for lending your ears each Sunday and allowing me to share our lives with you. I hope that the next time you encounter a child like Malachi that you too will see the blessing and their value.
Jake and I have fallen in love with a quote from another special needs momma who said “If even one person came to know Christ through my son’s story, then his challenges have been worth it.” Amen. Amen. Amen.
And one final interesting fact! There is a feature on this blog that allows me to see the different countries that people are reading from. I have been fascinated with the variety on the list! Now it very well could be accidental clicks or google searches leading them here, but nonetheless the internet is a pretty awesome thing! In the last few months we have had visitors from Norway, Romania, Brazil, Canada, Italy, United Kingdom, Mexico, New Zealand, and Portugal! So neat.
Jake, Leah, and Malachi