Our final week of summer break has officially ended and I am mentally trying to pump myself up for mothering solo. It is always blessing having Jake home and being able to split the responsibilities. He heads back to work in the morning, and it will take a few weeks for the boys and I to acclimate again.

Malachi has settled into a very manageable and generous sleep cycle, going to bed by 2am and not waking up until 9. We never know how long each new cycle will last but I am really hoping this can be his new norm for awhile.

In an effort to get Levi to sleep until 9am I am putting him to bed at midnight. It is difficult to have to tailor one bedtime to suit an ever changing one, but it is the only thing I can think of to preserve a bit of sleep for myself.

Levi has recovered well from surgery last week, but is still having some issues with aspirating. I am not completely sure why this issue is lingering post-op and I am a tiny bit concerned. He has also been extra cranky this week, but I am thinking this is more of a caloric needs issue- and the two issues could possibly be related. If something is making it uncomfortable to eat and drink then his blood sugars can get wonky. I am going to start doing some daytime g-tube feeds with him this week to see if I can notice a difference.

Excuse the play room explosion in the above picture! We had lots of play dates this week!

The soccer team that we coach hosted a soccer camp for kids this week and Levi had so much fun! We ran them through stations and by the time he made it to mine he had a loud stridor and his little ankles just couldn’t handle anymore activity. They were folding out, even with his braces and supportive high top shoes.

If I am being honest, this realization made me so sad. I had convinced myself after our indoor kids soccer league that Levi was going to be able to play sports, despite the initial reports from doctors that many children with his condition cannot play sports that involve running. Watching him fatigue so quickly and breathe so hard made me process that Levi may have to be selective in his hobbies.

Malachi has been growing so much lately and is getting heavier and heavier! He also has been so playful and full of energy. He has gone from swimming for 30 minutes at a time to over 3 hours!

Malachi is also cognitively growing in so many ways. He is 100% aware of every conversation had in his presence. He is aware of when he is included and keenly aware of when he is being excluded. Before Levi was active we were able to get away with a lot more, but now Malachi is aware when Levi is being given the chance to do something Malachi cannot. As a parent, it is so hard to balance when to prevent Levi from doing something for Malachi’s sake and when to allow Levi and try to help Malachi process through those emotions.

This week we went to a local climbing place for a family members birthday party. Malachi was completely fine until all of the kids started climbing, then his emotions changed. It is a hard decision for us to make…do we keep him home from these events to spare him from feeling excluded (not intentionally by people, but by experiences) or do we continue to take him and have lots of conversations before and after to help him have realistic expectations?

The medically complex life is full of decisions that I do not feel prepared to make. There are no books, manuals, or mentors who have walked the exact same journey I am called to walk. Even other medically complex moms can only offer suggestions, as each child with complexities is so incredibly unique.

I find my prayers often diverting to the same theme…wisdom. I often pray that God gives me clarity of mind, grace for my moments of regret, and lots and lots of God-given wisdom.

This week I spent some time studying Solomon in his prayer for a discerning heart from 1 Kings 3:7-9. I actually have been really debating whether or not wisdom and a discerning heart are truly the same thing. But nevertheless…In verse 5 we read: God said, “Ask for whatever you want me to give you.”

Solomon speaks back to the Lord with this request:

 “Now, Lord my God, you have made your servant king in place of my father David. But I am only a little child and do not know how to carry out my duties. Your servant is here among the people you have chosen, a great people, too numerous to count or number. So give your servant a discerning heart to govern your people and to distinguish between right and wrong. For who is able to govern this great people of yours?”

There are so many powerful, noteworthy things in this tiny chunk of scripture. The first being God’s sentence to Solomon. He didn’t speak like a genie in a bottle, offering to grant one wish. He simply said “Ask for whatever you want me to give you.” There was no promise of granting the request, just a relational moment between the Creator and his creation, wanting to hear his heart.

How often do we verbalize to God the things we desire? If we see God as our Father, why do we keep our heart’s desires hidden from Him?

Solomon’s response related to me in so many ways. Particularly the part of “But I am only a little child and do not know how to carry out my duties.” WOW what an accurate portrayal of the special needs parenting world. But the more I read it the more I recognized all the other ways in which this sentence applies to my other roles (and possibly yours). Inadequacies are rampant in our callings in life. Very rarely do I feel confidently qualified.

Which reminds me of the importance of humility in our walk with God. Oh the beauty of God shining through our inadequacies and filling the holes in His perfect way. And what a faith building scene to witness.

I was also struck by Solomon’s word choices in his prayer to God. His continual reference to himself being a servant to God is such an honoring stance to take. It is easy to view myself as a child of God, a role that is bestowed by His grace and atonement. But to in turn view myself as a servant of God, someone who desires to carry out the tasks He has written for me…what a beautiful gift it is to God when we look for ways to bring Him glory and honor. What a transformation of faith we can experience when we wake up every morning, looking forward to the to do list written for us by our God.

Please join me in praying for a discerning heart as we navigate this complex world. And pray specifically for our transition as Jake goes back to work.

Also, please be in prayer with me about this blog. We have written an entry every week for over 9 years and I don’t feel led to stop writing. But I do periodically prayerfully reconsider the frequency of entries. I write for myself mostly, to be able to give room to process emotions in a safe place. But if even one person can draw closer to God each week then it is worth continuing. Please join me in praying for a very clear direction from God.

Much love,

Leah