Smoke, smoke, smoke! Our area has been going through a drought with no significant rain in quite awhile. In the last several weeks there has been an outbreak of wildfires in our area that are extremely difficult to control. Thousands of acres of forest have burned and the smoke in the air has been almost unmanageable. Even the local schools had to shut down one day this week due to the fire alarms incessantly going off!
The smoke seems to have impacted me more than Malachi, which I am extremely grateful for. Malachi has something called CLD (Chronic Lung Disease) and will always carry a slighter greater risk for lung infections due to his prematurity and trauma that it caused to his lungs. We spent this week avoiding the smoke at the cabin and finding ways to keep busy in the town next to ours.
I am officially cleared to update you on the sale of our home- We are under contract! After just a week and a half on the market we received our first offer and we accepted. We have spent the last few weeks going through the motions- appraisals, inspections, home repairs, paperwork. We are scheduled to close in exactly one month from today (December 20th). Jake has this week off for Thanksgiving so we will start the process of moving anything unnecessary out of the house and into the vacant house we will be living in while we build. We are continually amazed by God’s provision and how He continues to hold us in the palm of His hand. We are so very blessed.
Malachi’s seizure increase calmed back down last week and overall we had a decent week. I ended up with a head cold mid-week keeping us home most of it. Again, we can’t help but give glory to God for keeping Malachi healthy this week. As you know, he and I share personal space 90% of the day, so keeping my germs from him seems impossible. And with his new nose licking trick in the bed, it truly is a wonder that he isn’t sick.
We used the down time to work on the alphabet letters and sounds. As you can see from this video, they are clearly very funny:
I don’t know about you, but the only thing that makes me feel better when I am sick is a solid night’s rest! Unfortunately life can’t provide that for me right now, and lack of sleep seems to have dragged me down. This week will be a good “catch-up” one as Jake can help with the night shifts during his week off. Malachi’s sleep habits have deteriorated and he is getting up around 5 times per night, and will stay awake for 1.5-2 hours each time. It has been a rough mentally. There is nothing more discouraging than putting him to bed and laying down only to have him wake up 15 minutes later and remain awake for hours.
Here is a silly video from our week of Malachi sharing his bag of crackers with his daddy:
This week the world celebrated “Prematurity Awareness Day”. As you know, Malachi was born at 24 weeks (4 months prematurely). For many preemies they are able to overcome their rough starts and lead healthy lives. Malachi’s story took a different route, and our list of relatable groups has grown from just prematurity to HIE, CP, Epilepsy, and so much more!
This may sound odd, but as we have progressed down our road I have found that we are no longer fit in prematurity groups like we used to. Our outcome isn’t the inspirational one that new NICU parents want to see. And truthfully, one of the main survival techniques in the NICU was clinging to hope that Malachi would be unaffected by his challenging yet grand entrance into the world. So I totally understand the desire to only focus on the better outcomes.
I sometimes get sick to my stomach as I look back at those dark days in the NICU. That deep, pit of your stomach that wrenches with the feeling of helplessness.
Each of us has a story to tell, and each of us has a book to author. When we write our stories, we can choose words that allow us to be victims of our circumstances. We can paint pictures that focus on suffering and sadness. We can do these things without telling a lie. Life is difficult, and facts are the facts.
But we can also take another route, and choose words that convey dominance over a circumstance. Our painted pictures can show a confidence in a higher authority, who guides our brush with every stroke. We can choose to see through our tears and look for a hope that we know exists, even when we cannot see it.
Life is challenging. No matter who you are, your life has been touched by a trial, tragedy, or situation unique to you. My prayer for you is that when you write your story you are able to put on glasses that help you focus on the good of the situation instead of dwelling on the bad.
So this year for prematurity awareness day, as tempted as I am to write an emotional post highlighting those dark days, I am choosing not to. Instead I want you all focus on the fact that Malachi overcame. Malachi is the boy who lived…Malachi is a survivor…Malachi’s life was and is in the hands of awe-strikingly powerful God. He is a preemie warrior whose fight for life has inspired me more than anyone else I have met.
I have been working these week to organize our things, including the file cabinet. As I have sifted through thousands of medical bills and medical documents I have had to keep my mind focused on positive things. I came across a letter that was sent to us shortly after Malachi’s birth from a stranger.
The letter concludes with this: “As my gift is prophecy, Malachi’s gift is the gift of healing. He will always be a source of peace and spiritual healing. As you hold your son tonight, look deep into his eyes and let God’s healing wash over you. Be at peace. Let your strength and faith be renewed through the vessel of your “little messenger”. God is in control.”
Truer words have never been written.
Jake, Leah, and Malachi