Thanksgiving week turned out to be a great one! The holiday messed with our therapy schedules a bit but we were able to cram lots of activity into one week off with daddy.

Mom took some of the youth group on a hike this week. We climbed straight up a mountain…one of Jake and I’s favorite hikes when we were in college. The view is breathtaking, especially in the fall so I snapped a few pictures to share with you. This is about ten minutes from our house. We love this place!

Malachi had his best session of horse therapy yet! He was shouting “walk” to the horse right on cue and even said the instructors name with perfect clarity (“Tara”). These Monday afternoon sessions are hands down his favorite. I am so proud of how far he has come. Tomorrow we are planning to have him ride solo again with the pillow attachment to make him work a little harder. These last few sessions he has been riding tandem with the instructor.

I think Malachi may be going through a growth spurt! He is all legs these days and so incredibly long. I snapped a picture of him today at lunch to give you some perspective. He was sitting with his buddy Sam!

Malachi’s seizures seem to have changed a tiny bit lately, so we are watching them closely. His seizures used to end with slight laughter and now are ending with an angry yell and sometimes tearful cry. They are definitely starting to scare him, which is difficult to watch. He has also started zoning out a bit before the onset which is also a new thing. We are scheduled for an overnight EEG December 5th but I am waiting to hear back from the neurologist to make sure this test is absolutely necessary. It will confine us to a small area of a hospital room for 24 hours and they will glue electrodes to his scalp. Getting them off can be a painful process, so I want to be absolutely certain that the test is necessary before putting him through that again. The Vanderbilt overnight EEG wasn’t too long ago, so I am hoping we can use that data instead.

With the chaos of our upcoming house closing/move we have not been as ambitious about feeding Malachi from a spoon. He has been getting small tastes of things here and there but nothing substantial. Having Jake off work this week was definitely a blessing, but our time quickly vanished with chores and other various things. Jake was able to spend two of the days at a local children’s home doing repairs with a crew from our church. The rest of the time we have been boxing up our things and making plans!

Here are some silly videos from the week:

Our original plans have changed ever so slightly requiring us to find a place to rent during the construction process. Even though I try my best to give anxiety to God, it definitely got the best of me this week and I found myself tossing at night trying to mentally sort out the next several months. Jake and I were driving down the road talking about possible solutions and I realized how ridiculous it was for me to waste time and precious sleep stressing over something that God already had figured out.

Within 24 hours we had worked out a plan with a local family who is also building a home for their special needs daughter. They are planning to move into the new house by New Years, which will be just a few weeks away from when we will be closing. They are going to let us store our things in their basement and rent their old house after they move out of it. It is about 2 miles from the church and Jake’s school and will allow us to remain in our community. God is a provider, that is for certain! Here is a picture of the house we will be renting.

My to-do list is growing more and more each day as we try to process the dramatic change our lives are about to take. Even the idea of changing the address on our medical paperwork for all of his specialists has me stressed out. I have to keep reminding myself that the end goal of a Malachi friendly home will make it worthwhile.

We took a day trip to Georgia this Thanksgiving to visit with my brother and his family. It was refreshing to spend time with them! Jake and I got to have some great, focused conversations on the ride there and back- those don’t get to happen too often in our crazy world. It was a fun day.

Funny story of the day: Malachi has been a terrible sleeper this week and I have been running on fumes. This morning was no exception and as I scrambled to get myself ready for church, Jake offered to get Malachi ready. He forgot just one thing…let’s see if you can figure it out haha…

In my Bible study tonight we talked about the character of Ruth in the Bible. We discussed how broken she must have felt losing a husband, abandoning her culture and upbringing, and living as a poverty stricken girl in a strange land. The thing that strikes me most about her character was her humility.

1 Peter 3:4 says “Rather, it (your beauty) should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.”

As I read this verse I evaluated my own spirit to see how “gentle and quiet” it truly was. And to be honest, sometimes my spirit is more like a freight train in a tunnel! But the end of the verse reminded me that humility is of great worth in God’s sight.

Time and time again we have watched God close doors in our lives, only to see Him later open an even better one with a greater blessing. You think that witnesses that time and time again would have developed a gentle and quiet spirit within me that trusts God without hesitation! But the human-ness of me always tends to trump that quiet nature and I create turmoil stressing about the doors that have been closed, forgetting about the ones we have yet to encounter.

One of the neat things about being a child of God is that it is not something to be “mastered”. We all make mistakes and we all have moments of weaknesses. But we carry a hope that can’t be replaced with worldly things. So this week I will be asking God to help develop in me that gentle and quiet spirit that is so valuable in God’s sight.

May your week be full of blessings!

Jake, Leah, and Malachi

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.

God bless,

Jake, Leah, and Malachi

This week has been full of fun moments with Malachi. We started the week of with a GREAT hippotherapy session with a new horse named Norton. Malachi has made such amazing progress with his weekly riding sessions and we couldn’t be happier.

After the session we headed to the Wal-Mart to pick up bulk supplies for our soccer banquet that evening. I am pretty sure I made a vow about a month ago that I would never go in there again, yet here we were…cruising the aisles and avoiding stares. There is no place quite like the Wal-Mart when it comes to variety of people. Last month’s trip ended with the cashier asking “So what’s wrong with your son?” And this trip we were stopped by an elderly woman who was comparing Malachi to a great grandson that she had with special needs. She kept referring to them by saying “Aren’t they just so pitiful?”. Each time she used the word pitiful (about a dozen times), she looked for me to nod in agreement with her. Instead I just smiled and thanked her for sharing her great grandson’s story with me. It is so difficult to not get my feelings hurt in these situations…I simply what the world to see Malachi for the blessing that he is.

After a busy Tuesday, we did make it to the polls to vote!

Malachi’s sleep habits are still pretty atrocious. A few weeks back when we visited with the neurologist I asked him about medications that could help calm his mind at night. He prescribed a med that is used in adults for another purpose, but have been known to help neurological kids in low doses. I filled the prescription but just couldn’t get a peace about “drugging” my son simply for sleep.

Wednesday rolled around and I was desperate for more than 6 hours of pieced together sleep so we put a few drops in his bottle. Within 30 minutes he was out like a light! He still woke up twice but instead of staying awake for 2 hours, it was only 30 minutes each time. We pieced together a full 8 hours and I was feeling great! But unfortunately the effects of the medicine stayed in him for longer than expected and he was acting like he had a hangover even until dinnertime. As I looked at his carefree and emotionless face that day I felt so guilty that I had given him the med. We may try again in desperate situations, and possibly try fiddling with the dosage but I don’t know that I want to do that again anytime soon.

I have been trying to make Malachi lay down in the bed with me for random naps throughout the day. It worked one time, and by golly it is bound to work again, right?!? He thinks it is absolutely hilarious that we lay down and get quiet and just can’t help but fill the silence with silly squeals. I ignore them so he proceeds to try to hit me in the face to make sure I am still awake. I take the blows like a champ, hoping he will give up, which he eventually does. But then he moves on to his next “move”…licking me on the nose. It inevitably freaks me out every single time and he gets the reaction he is looking for…eyes wide open and a shriek from me…and then he just laughs and laughs and I give up and try again another day. Crazy kid.

Jake and I have been trying to step out of our comfort zone lately and allow Malachi to go to the church nursery when no other kids are in there for the evening. We got this cute video of him singing songs from Wednesday.

Friday we went on a family date to see a Christian comedian named Tim Hawkins! It felt good to laugh! We often hesitate to take Malachi to events like these for multiple reasons, but the main two being crowds and seizures. Luckily we had some very kind friends save some seats for us eliminating one of those worries. As for seizures, Malachi only had three and they were very brief. The loud music got to him a bit at first, but after he adjusted to he was okay.

Saturday the family fun continued as we headed to the zoo to meet our twin buddies, Braden and Thatcher. If you are new to the blog, their mother Lauren and I met at one of the neurosurgeon appointments about a year ago and connected immediately. The boys are about a year younger than Malachi and one of them also has CP. Spending time with them is so refreshing and Saturday was no exception. Malachi was able to ride a camel, pet some goats, and even get snubbed by a chimp. He giggled like a wild man at the macaws and really seemed to enjoy the visit.

And here is a video of the less-than-amused chimp:

Malachi continues to try new foods. Yesterday Jake was eating a bag of chips and Malachi heard the crunching. I offered him some baby food, which he quickly spit out. He continued to ask for bites with his body language so we got out his “crunchies” and I gave them to Jake to try with Malachi. Bingo! He wanted to eat what his daddy had, and when he heard him crunching he decided he wanted to crunch like daddy. He is so expressive these days with his communication!

After church this afternoon we headed to a local restaurant called the Dam Deli. We absolutely love the place and are good friends with the owners. In fact, I remember being in the hospital bed two days after having Malachi and one of the owners and her children came by for a visit. Aside from eating frequently at their restaurant, we had not interacted with them, so it actually made me laugh when they came for a visit. I told Jake “You know that you eat at a place too much when the owners drive an hour to visit you in the hospital.” But all joking aside, they are wonderful people and now that we have gotten to know them, this act of kindness doesn’t seem out of line with their character. They are good people.

Okay, so back on track! I often tell you about times when someone secretly pays for our meals when we are out in public. The last 5 times we have been at the deli this very thing has happened, each time bringing us to tears. The owner told me “I have never seen anything like this!” Almost every time it is done by someone we do not know, and they leave before we are told. These random acts of kindness are so touching, and today’s was no exception.

As we finished up our meal, a gentleman came over to our table who had been sitting alone behind us. He said “I don’t want to interrupt, but I just wanted to tell you all how much you impacted me today with the love you have shown your son. I appreciate the love that you give him, and I admire you very much as parents.” He then handed us an envelope and explained that he had tried to pay for our meal but someone else had already done so. Inside was a gift certificate so we could enjoy another meal out together as a family.

At this point I was obviously crying and we thanked him for his encouragement and gift. We made small talk with the man and found out that he is a probate judge in Georgia and just happened to be cruising through on his motorcycle. We were able to share a little bit of Malachi’s testimony with him and explained that he was a blessing to our family. God is so good.

As we drove home Jake and I talked about what had happened. We have never been the type of couple that likes to be the center of attention. Yet God gave us a three year old in a neon green wheelchair that turns heads wherever he goes. Whether we like it or not, we are seen…and watched closely.

We talked about how amazing it was that God gave us Malachi- an amazing example of the love of Christ. Not only do we get to see unconditional love in his eyes like the love of the Father, but we also get to practice being imitators of Christ as his parents. Daily we are required to lay down our desires and selfish needs and instead put someone else before us. I don’t know that many Christians get the same opportunity that we do to daily bear the burdens of another. God is using Malachi to teach Jake and I so much about the selflessness of Christ. He is also using Malachi to teach the world about the mysterious yet great ways of God.

Yes, we have days of very un-Christlike behavior; anger towards Malachi for things he cannot control, curse words when things don’t go as planned, verbal retorts to offensive questions from strangers. But amidst those moments are ones where we get to see the lessons of Christ firsthand. Malachi is a blessing.

Please keep Malachi in your prayers this week. He has had a bad day for seizures, having several big ones today. When this happens, we hold our breath as we try to figure out the cause. It could be constipation, upset tummy, or a sickness coming on. Please pray that we find our answer quickly and that it is an easy fix.

God bless,

Jake, Leah, and Malachi