Oh boy, adjusting to posting every two weeks has been more difficult than I imagined! So much has happened over the last two weeks- the good, the bad, and the challenging. If I am ever late on posting that means we had a house full of teenagers until very late haha!
Good reports: Malachi has been raising his arm over his head! This seems insignificant but after ten years seeing such purposeful movement is so huge. He has been very proud of himself each time he successfully does it.
This week we received a package from Make-A-Wish and Malachi was so thrilled. He giggled as we unveiled each new item and talked about the trip. On a scale of 1-10 the excitement right now is a solid 100. Both boys squeal with delight each time we talk about it. We will be leaving for Orlando in one week! I can’t wait to share the details of our trip with you all when we get back.
May is always a busy medical month for us as it hits several of our big specialist appointments. But nothing negative to report from any of those, praise the Lord!
Challenging reports: Levi’s school year is coming to an end and we have been making our final decisions regarding next school year. We have officially made the decision to have Levi do another year in preschool with some pull-out services to try to concrete some basics. Levi’s fine motor restrictions make handwriting, coloring, and other things more of a challenge. The gap between him and his similar age peers is a pretty significant one, so navigating that new reality has been a something we have spent a lot of time and prayer on.
We try so hard for normalcy, so each time we aren’t able to achieve it a little piece of me mourns. But in the bigger picture milestones can be achieved outside of the normal timelines. So we will continue to focus on forward progress and be thankful each time that happens.
And now for some of the bad reports. Thankfully we are through most of the trials we have had over the last two weeks so I guess I could slide them into a different category now.
Malachi takes three seizure medications twice a day and he still has uncontrolled seizures (formal diagnosis: Lennox Gastaut Syndrome & Intractable Epilepsy). He is extremely reliant on these seizure medications for quality of life. One of the medications (Epidiolex aka FDA controlled CBD) can only be ordered through a mail order pharmacy and the timing is very strict for re-orders. We scheduled our delivery 10 days before he would run out but when delivery day came it did not arrive. I started making phone calls the next morning and they assured me it was on its way and to call back if it didn’t arrive the next day.
Very long story made short….the package was lost by UPS. This realization by the companies involved happened at 4:00 on a Friday. I immediately called the epileptologist office but the on-call doc’s solution was to take him to the ER if he started having breakthrough seizures. We spent hours upon hours on the phone trying to find a more reasonable solution, but in the end Malachi had none of this medication for nearly 4 days. The breakthrough seizures hit strong on the following Monday evening (15 large seizures in 1.5 hours) and we still didn’t have any replacement meds.
I ended up going to a local CBD dispensary and trying to find something comparable to give him until the medication arrived. And that was enough to get the seizures to calm down and put a smile back on his face.
There is definitely some holes in the process that need to be filled. Today I met with the epileptologist and discussed some solutions to prevent this from happening again.
The emotional toll this situation took on me was a significant one. Malachi’s quality of life was most definitely affected. He wasn’t able to sleep due to discomfort and watching him suffer without a reasonable solution to turn to was really, really challenging for us all. It brought about all of those feelings of helplessness, and as a mom that is one of the hardest pills to swallow.
Discouragement is always lingering in the shadows of our life, and when I have on my negative glasses I can find it pretty quickly. And the more discouraged I got the more useless I felt as a mom.
I spent time reading in Ezekiel this week, revisiting the prophecy in the valley of dry bones from chapter 37. The Lord takes Ezekiel into this valley where he is surrounded by piles of dry bones
Thus says the Lord God to these bones, ‘Behold, I will cause breath to enter you that you may come to life. I will put sinews on you, make flesh grow back on you, cover you with skin and put breath in you that you may come alive; and you will know that I am the Lord.’ So I prophesied as I was commanded; and as I prophesied, there was a noise, and behold, a rattling; and the bones came together, bone to its bone. And I looked, and behold, sinews were on them, and flesh grew and skin covered them; but there was no breath in them. Then He said to me, “Prophesy to the breath, prophesy, son of man, and say to the breath, ‘Thus says the Lord God, “Come from the four winds, O breath, and breathe on these slain, that they come to life.” So I prophesied as He commanded me, and the breath came into them, and they came to life and stood on their feet, an exceedingly great army.
I love this chapter as it paints such a vivid picture. And this week it served as a much needed reminder to me that without the Spirit of God within me I cannot function as a soldier of God…even in my mothering.
John 15:5 I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.
I pray that God continues to fuel me with His presence and gives me clarity to turn to Him for life when I have crumpled into that valley of dry bones. When we are feeling empty it is a great reminder that we may have partially disconnected from the Vine.
Please be in prayer for us as we prepare for a big, exciting week. Pray specifically over health for our family and that the memories we create will be lifelong ones we can look back to. Pray against the spirit of discouragement in me as we venture out of our bubble.