Jake is officially on fall break this week, and it couldn’t have hit at a better time. We are looking forward to a week of catching up on chores, swimming in the pool, going on some small family outings, and taking turns napping. Bring on the sleep!
There is a constant pressure that builds on the special needs mom. It isn’t anything specifically unusual or extraordinary that contributes to it, but I have found it to be a combination of the routine medical needs plus the surprises. I can’t handle the surprises. They mentally break me.
Special needs mothers have to accept that there are so many things beyond our control. One morning this week I medicated and fed both boys, then at the exact same time they both started throwing it all up (Malachi one large and Levi 5 smalls as he walked from the kitchen to the living room). I looked back and forth at each child retching, trying to keep each from choking on their vomit and also trying to survey the damage to know what to get to clean it up…carpet cleaner, tile cleaner, bath towel, garden hose haha?
My morning started calm with everyone ready to walk out the door and escalated to baths, outfit changes, and deep cleaning. Then there was still the question of whether or not to re-medicate both boys.
It is in these moment of chaos that I feel the pressure build a little bit more.
We made plans to meet some friends at the zoo this week, but the night before Malachi ended up having several seizures. He and I stayed up until 3am and woke up just a few short hours later with another big seizure. I knew he was so excited to go to the zoo, but clearly his little body was exhausted.
You can’t plan for the surprises…and I don’t know that it is healthy to live a life anticipating them. But at this point the surprises come so regularly I am not sure they actually qualify as surprises anymore!
We ended up going to the zoo, and while Malachi was very limp he did have a wonderful time. He even got to feed the giraffes and ride the choo choo train which ended up being his favorite. I so badly want to create these memories for my boys, and it makes me feel a bit like a typical mom.
And Levi was a wild man! I haven’t seen him that wild ever, and he had such a wonderful time.
We came home that afternoon and tried to recuperate from the fun day. Both boys slept on the way home and woke up a little more perky. My mom came over to play with the kids while I ran down the road to watch the soccer team play and when I went out to the van it wouldn’t start.
For some reason, this surprise hit me harder than the medical ones. I had a “life is not fair” moment- as if life should recognize that my plate is full and not add things to it. Oddly enough I had just taken the van to the shop this week for a different reason. Life had tossed two van repairs onto my teetering plate in two days.
I tried to call Jake, but he was coaching the girls and didn’t answer. So then I threw myself another pity party with the theme of feeling alone. There are times I so desperately need someone else in my life to take over some of my burdens, and Jake can’t always do that with his work schedule.
I can fully admit when my burden is too heavy to bear, but sometimes when I look around I can’t find anyone to help carry part of the load. It is a weird and lonely place to be in. Most of the time those burdens are too unique to be able to pass off to someone else, but typical things like car problems are in a different burden category.
So I had a good cry over that and then popped the hood to pretend to know how to fix the car haha. Thankfully later that evening one of our wonderfully supportive friends came over and helped solve that problem. And the other repair will get fixed this week while Jake is on break.
Changing gears- we got new neighbors this week and they have some friendly dogs that stopped by for a visit. Malachi has always loved dogs, and loved our two so much before they each passed away. One day we would love to get another dog, but you can refer to the “surprises” comments above to imagine how that would go right now.
Oh how I love seeing pure joy on Malachi’s face. And his toothless grins. He is cutting a few teeth right now, which could be the culprit for the uptick in his seizures.
Levi has been eating and eating and eating this week! I think he must be going through a growth spurt. We met in person with the boy’s feeding therapist this week next to the parking lot of the clinic. We have been doing tele-med with him since March and I felt like it would be good for him to lay eyes on Levi while he ate. I am still not comfortable resuming therapies yet in the clinic setting and can’t imagine us doing that for quite some time.
I know sometimes I reuse verses and thoughts on the blog, but there are things God has shown me in the past that He brings to my attention time and time again. This week as I have encountered an overwhelming amount of surprises I keep thinking of a specific verse from the Bible: “Get up and eat, for the journey is too much for you.”
Out of context those words might not mean much to you, but when you hear the story surrounding it, it really takes form in my life and might in yours also.
Take a moment and read this excerpt from 1 Kings 19:
3 Elijah was afraid and ran for his life. When he came to Beersheba in Judah, he left his servant there, 4 while he himself went a day’s journey into the wilderness. He came to a broom bush, sat down under it and prayed that he might die. “I have had enough, Lord,” he said. “Take my life; I am no better than my ancestors.” 5 Then he lay down under the bush and fell asleep.
All at once an angel touched him and said, “Get up and eat.” 6 He looked around, and there by his head was some bread baked over hot coals, and a jar of water. He ate and drank and then lay down again.
7 The angel of the Lord came back a second time and touched him and said, “Get up and eat, for the journey is too much for you.” 8 So he got up and ate and drank. Strengthened by that food, he traveled forty days and forty nights until he reached Horeb, the mountain of God. 9 There he went into a cave and spent the night.
When I read this story there are so many things that pop out at me. While I have never been ready to die, I can relate so much with Elijah’s comment “I’ve had enough, Lord.” Have you ever spoken those words to God? I know that I have spoken them many, many times. I have said them in the same tone as Elijah too, in a total moment of defeat and surrender.
God sees our innermost being, and He knows before we even speak it that we have been pushed beyond what we think we can bear. But sometimes it is in those weak moments that we can hear God the clearest. When we are able to handle all of the “things”, we don’t have to turn our eyes to Him in desperation. But it is in those moments where things extend beyond our control that we have no other option but to call on Him.
In this story, God sent His angel to restore strength to Elijah. He met his needs in a supernatural way, providing a warm fire, fresh baked bread, and a jar of water. This part is interesting to me as well, because a few chapters back we read about God providing food for Elijah dropped by ravens and water from a nearby brook. This time it was provided in such an intentional way, almost as if God knew Elijah needed the act of kindness more than the sustenance. Oh boy, how often I have been in that same state of mind.
The second time the angel wakes him up is so powerful to me as well, as if God wanted to make sure Elijah knew that even the tiniest needs, like his hunger, were acknowledged and important to Him.
But the angel’s words just keep playing in my mind: “The journey is too much for you.”
This week I have felt like the journey is too much for me. I feel underqualified, overwhelmed, and emotionally fragile. I feel inadequate, and in many ways I am.
The journey is too much for me.
But like Elijah, I have to find comfort in knowing that God sees that this journey is far too much for me. He sees that I need sleep, he sees that I need someone else drawing water for me in a jar and baking warm bread for me over a fire I didn’t have to create. He hears me say “I’ve had enough, Lord.”
And He isn’t angry at my proclamation, but instead I can see him with a loving smile on His face, touched that I have diverted my eyes towards Him. I am sure He has already dispersed some angels my way, like our car buddy on Thursday night.
And I have confidence that He will give me the strength this week to continue the journey.
I don’t know if anyone else needed that reminder…I know I sure did!