So it is just after midnight and I find myself needing to take a deep breath before I begin writing. My emotions today have been all over the map, so let me take a different route with the blog!

Things I am thankful for from our week:

I am very thankful for the ability to stay at home with Malachi. As we zoom around town to his many therapies and appointments, I can’t help but wonder what kind of guilt I would be experiencing had I not been able to be the one driving him.

I am thankful for an exceptional physical therapist. She is one of Malachi’s favorite people and is so productive in her sessions with him. It is so refreshing to sit back and not only watch someone else push your son to his potential, but to find another soul that recognizes that Malachi CAN.

I am thankful for very dear friends that reach out to me on their days off to reconnect, choosing meeting places and activities that accommodate Malachi and I. It is these little gestures that truly touch my spirit.

I am thankful for the strength (undoubtedly only from the Lord) to be able to stay active in our church body and fulfill callings that God has placed on my heart. Nothing feels more refreshing than surrendering to God and trusting Him to direct your paths in the direction He would have you to go, and give you the strength to do the tasks.

I am thankful for a certain couple whom we have never met that so generously encouraged us this week with a perfectly timed financial gift. God is good.

While there are so many incredible things I can list to be thankful for, there is a dark side to our days. Each day is full of physical, mental, and emotional fatigue. Each day I find myself struggling to not worry about the future. Each time I bend down to pick Malachi up, I think about the day in which I will not be able to do so.

Every sentence I have typed in the last few minutes has been subsequently deleted after I read how self centered they sound. I am trying to decide how open to be with you, at the risk of sounding selfish.

This week I have been reminded that the world continues to spin at the same rate for everyone in it. For others that means that there is an ever advancing timeline of events that continues to flow over time. For me, we seem to be stuck in our timeline, not seeing many huge improvements with Malachi, and wondering if there is another milestone anywhere on the horizon. Week after week I watch my little warrior work, and achieve very few significant results. I worry about my health and whether I will outlive my son…I worry about my son outliving me. I worry about things I don’t like to even verbalize.

I find myself in a jealous place, frustrated that others can enjoy life while we are still in a survival mode. This week I have found myself waking up every morning with the only goal being to mentally survive until bedtime. I am in a constant fog of exhaustion, relying on caffeine and God to get me through.That combo leaves me very emotionally fragile, with even the smallest things causing me to erupt with tears.

Such a grab bag of emotions.

Alright- I recognize I am rambling. Let me move on…

Last week we were able to successfully fit Malachi’s stander. Here is a picture:

I tried to get one with him smiling, but such a picture does not exist. He is still not a fan, but I am happy to say no more tears have been shed in the stander process.

Malachi had some great peer time this week. He had his music class. He had a play date with one of his buddies at church in a local park. He also tagged along to two of our soccer games this week and sat by the bench close to the girls. On Saturday, he joined the youth group at the local food bank and listening to the chaotic commotion as they filled bags. And finally, this evening he spent some time with some Ohio cousins. He liked being “one of the boys”.

Malachi is still working hard to communicate with me in his own Malachi way. He has been using his “sad” face more and more to indicate “no” and I am very intent on respecting that, hoping that he will communicate more to me. But in the process, he is being spoiled rotten. He used his communicating to eat cake icing for lunch today…crafty little boy.

My eyes just crossed, so I think that is my cue to wrap this up. It has been a very long and exhausting day haha!

Please  continue to lift us up in prayer. Right now I need some relief emotionally. I am experiencing emotions I am not proud of. Pray that we get to a place where we are rested and able to enjoy every day. Pray for some major milestones this week…we are due for one!

And thank you for allowing me to be me. 🙂

God bless,

Jake, Leah, and Malachi