Malachi’s mysterious symptoms from last week dissipated relatively quickly. His fever stayed away, and in fact his body temperature continued to drop- something that is very common with Malachi. When his fever breaks, his body has a hard time finding normal again so we quickly transitioned from diaper only to sweatshirts and toboggans until it settled back in the 98 degree range. He has had some drainage this week, but nothing a little Claritin can’t help.

Here is a little video for you. He was listening to one of his cerebral palsy buddies say his ABCs. He is getting so much better with his alphabet and this week alone he accurately said his H, I, L, and O.

As a precaution, we cancelled his appointments on Monday and hunkered down in the cabin. When Malachi feels crummy he just wants to snuggle, and that was fine with me! We were able to work on table foods and other things that tend to get neglected on busy days.

On a related note- there is so much guilt that comes with being a special needs mom. I sit in appointments every week where therapists and professionals give me a laundry list of things to do at home to help Malachi’s ___________ improve…feeding, core strength, head control, verbal language, receptive language, vision, hearing, fine motor skills, hip sockets, cognitive speed, and sooo many more. I always nod and smile, with the best of intentions to do everything in my power to complete these tasks. And then I get home after a physically and mentally exhausting day to see piles of laundry and dishes that have to get done, in addition to keeping Malachi fed, happy, and seizure free. By the time I do sit down, my body screams “THANK YOU” and that homework list is far from my mind.

It is hard to know that there are things I could be doing to help Malachi improve, and admit that I am not doing them. But I also have to remember that if I am clinically insane then I won’t be there to help him at all, and that makes me feel better about my 30 minute comatose state in the recliner each day. I am hoping that one day I will be able to have the energy to incorporate all of his homework assignments into our routine.

And since we are on a rabbit trail, why not take another detour? As you may know, our family does not participate in Halloween. I was very sensitive to “dark” things as a child- so much so that Snow White and 101 Dalmatians gave me nightmares for weeks! We don’t know how much Malachi comprehends, but I am always cautious as I don’t know if he will be the same sensitivity as me. But I do want to share a photo with you from some of Malachi’s online CP buddies. Their costumes this year impressed me so much that I wanted to share them with you! How awesome are these?!?!

After our recovery day Monday with no temperature issues, I felt like we could resume normalcy on Tuesday. We went to music class and spent some time with family. Wednesday was therapy day (aka guilt trip day haha) followed by a meeting at the house with a local agency that helps kids like Malachi. They will cover things that insurance denies if we follow certain protocols, so we make sure to stay current with them!

In addition to so many other boring tasks this week, we had five showings for the house. And let me tell you…this whole “showing” process is rough! I think it would be exciting and fun if our home/life wasn’t so complicated. Typically we will get a few hours notice when an agent wants to bring potential buyers in. I have a checklist of things that we do quickly, like cleaning the counters, hiding dirty clothes in the washer, scrubbing toilets, and vacuuming. But then there is the medical side of things like hiding medications and somehow “organizing” our many special needs devices and chairs in our home.

After the checklist is finished, we load up Malachi and our dog (requiring we drive two separate cars) and head out to kill time for the scheduled hour. Our go-to spot has been up at our church where there is a fenced playground area.

 

Who knew selling a home was so complicated!?! We aren’t daunted though. It is worth every effort to get Malachi into a home just for him.

This weekend was particularly special as Jake was asked to preach at our church. He was cool as a cucumber until yesterday when panic set in, but he did wonderful! Here is a link to his sermon if you want to listen (it is about 20 minutes long):  https://www.youtube.com/watch?v=VSDmCae9uH8

We have appreciated all the kind and encouraging comments concerning Gunner. She is definitely missed by all of us. I was actually looking through pictures this evening and stumbled on this one. She was definitely one of Malachi’s best friends.

I just did the “Great Calendar Switch” as we like to call it around here. We have a giant whiteboard calendar on the wall that gets updated at the beginning of every month. I write all of our medical and social appointments on it and then get depressed a little when there are only 3 or 4 blank days a month. This week will be a busy one- maybe that’s why God gave us an average one last week with a whole snuggle day built in!

This week I have been thinking a lot about Malachi’s story. It is impossible to look at his testimony and not see God’s hand all over it.

The Bible tells us that God causes all things to work together for good to those who love God, to those who are called according to His purpose (Romans 8:28).

It is very difficult to accept pity from strangers. When I get those looks, every ounce of me wants the time to sit them down and explain what a blessing Malachi is. I want to tell them about the ways God has used Malachi to change my faith. I want to share with them the goodness of God through the things He has done for our family. Through Malachi we see firsthand the meaning of unconditional love. Not to mention, the joy of the Lord!

God has worked things together for good in our lives. We are very blessed. Challenged daily, but blessed.

Thank you for lending your ears each Sunday and allowing me to share our lives with you. I hope that the next time you encounter a child like Malachi that you too will see the blessing and their value.

Jake and I have fallen in love with a quote from another special needs momma who said “If even one person came to know Christ through my son’s story, then his challenges have been worth it.” Amen. Amen. Amen.

And one final interesting fact! There is a feature on this blog that allows me to see the different countries that people are reading from. I have been fascinated with the variety on the list! Now it very well could be accidental clicks or google searches leading them here, but nonetheless the internet is a pretty awesome thing! In the last few months we have had visitors from Norway, Romania, Brazil, Canada, Italy, United Kingdom, Mexico, New Zealand, and Portugal! So neat.

God bless,

Jake, Leah, and Malachi

What a whirlwind week it has been. The first half of our week was busy balancing medical appointments and at the same time getting the house looking good enough to be listed.

Monday’s horseback appointment was an excellent one and Malachi’s giggles continued throughout the session. I took fancy camera and was able to snap some fun pictures to share with you.

Tuesday was our visit with the new epileptologist. As you could probably tell from last week’s post, I was really looking forward to this visit! I was a little surprised to see that the doctor was just slightly older than me and he explained that he was fresh out of school. So while he has the medical degree and textbook knowledge he does lack in experience, which has its pros and cons. He definitely seemed fascinated by Malachi’s seizures and after reading his EEG report from our overnight Vanderbilt stay in the Epileptic Monitoring Unit, he thought it may be best to conduct another ambulatory EEG (where we take the machine home and video the session from home). To my knowledge, our local children’s hospital doesn’t have this technology but I didn’t want to be the one to tell him that! Maybe he can pull some strings.

So we definitely didn’t learn anything new or get any new guidance on his seizures, but maybe a young mind will be up for investigating and finding answers. We will go back in four months and are waiting to hear about the ambulatory EEG in the meantime. Malachi also had a chance to get his flu shot…always a necessity for a kid like him. Jake and I also got ours- a special call out to the Drug Store in Benton for coming out to my car to give me the shot instead of making me carry Malachi in!

Tuesday was a long day as we scrambled to put some finishing touches on the cabin. Jake and I worked until about 7:00 and came in for some dinner. We noticed that Malachi’s favorite dog, Gunner, was acting as though she didn’t feel so well which is not uncommon. She has a very sensitive tummy and is usually fine after an hour or so. We continued to keep an eye on her and by 8:30 her breathing changed a bit. She was still acting somewhat okay, wagging her tail at us and watching us walk around, but I had a gut feeling I should take her to the emergency vet.

We were able to get her into the back of the van, and Jake stayed home to take care of Malachi. I drove about 20 minutes to the local 24 hour emergency vet and got her inside to see the doctor. Her breathing continued to worsen and as the doctor looked her over she just simply stopped breathing. I looked at him and said “SHE JUST DIED?!” And he quickly listened for her heartbeat and told me it was beating faintly and asked if I wanted them to try to save her via CPR. I said yes and they quickly took her to a back room and started trying to revive her. It was unsuccessful and Malachi’s best buddy passed away Tuesday night.

I was pretty shaken, as none of us had any idea that was coming. The vet thinks it had to have been a heart issue since it happened so quickly. Jake obviously also had a very hard time with the news and it was an emotional week in our house.

Dealing with Malachi’s needs daily has changed the way I cope with stress. For me, I am constantly running on reserve, so I had to choose to be okay with the situation pretty quickly. I can’t waste energy focusing on something that can’t be changed. When vet asked if I wanted him to save her, it hit a little too close to home with Malachi issues. I found myself getting extremely panicky as I was flashing back to meetings with doctors during Malachi’s NICU days. I had to shake those thoughts and memories.

We have been trying hard to keep from saying her name, hoping that Malachi will not continue to call for her. Our other dog Boomer has been allowing Malachi to pet him, which is pretty rare.

Wednesday was listing day. The realtor came and took pictures, and by Friday night it hit the website. Jake and I have been blown away seeing how much attention the cabin has gotten, with the help of social media. It has been active for two days and has been viewed on Zillow 4,400 times! That is simply amazing! In fact, we had our first showing today after church. Here is the link if you are curious to see: http://www.zillow.com/homedetails/1099-Thomas-Rd-Benton-TN-37307/81262404_zpid/

The rest of the week has been a blur. Lots of errands and running from here to there! We were so incredibly busy that I have a hard time remembering.

After such a busy week, it was not completely shocking to me when Malachi started sneezing and coughing yesterday. He started running a slight fever last night, which we were able to control pretty well today. Nighttime is always more tricky so we will see what the next few hours hold.

So before the sickness hit yesterday, the three of us were able to go on a “date” with our Sunday School group to Chattanooga! Secretly Jake and I were both dreading the outing (mainly the location…too many memories) and were going with the sole purpose of being social. We met at an “Escape” place where they set up a mystery for you to solve in one hour. And let me tell you…it was SO MUCH FUN!! It was so challenging and Malachi loved listening to us scramble around the room, piecing together clues and finding secret passageways.

 

Afterwards we went to the downtown area for dinner with the group. Jake and I are incredibly stressed in big city settings in general, let alone downtown Chattanooga at 6:30 on a Saturday night- with a handicap van (eliminating street parking because of the ramp). Wouldn’t you know that the second we pulled up to the restaurant a parking spot opened up, and the driver gave us their parking voucher that had been pre-paid for the entire evening?!? Thank you Lord!

All in all, it was refreshing to be “normal”. I am so glad we chose to go out of our comfort zone for a bit!

Speaking of kindness, we have been overwhelmed by it this week. We were out and about more than normal this week and I noticed so many people going out of their way to open doors for us, speak to Malachi, and just show kindness. I had Malachi at the grocery store on Monday and a sweet lady came up to ask if she could help me shop by pushing my cart for me. On Tuesday I stopped at a Cracker Barrel porch off the highway to give Malachi his morning bottle with meds. I frequently will use their front porches and rockers when I am on the road, as it is way more comfortable than trying to feed him in the car. As I was getting ready to feed him, a young woman who had gotten into her vehicle to leave returned to ask if there was anything she could do to help me. So much kindness.

A stranger came up to me this week and said something that has been rolling around in my head for days. She said “There is a special place in heaven for people like you.” I graciously smiled and thanked her, but as I processed her words, they secretly bothered me a bit. Sometimes I am in sensitive moods and easily find offense in harmless comments- like the Walmart cashier asking “So what’s wrong with your son?” In my head I want to reply “Nothing- he is perfect!” But there is no sense in making people feel bad simply to alleviate my annoyance.

So back to the heaven comment. I felt like it was implying that I am somehow going to be more exalted simply because I am raising a special needs son. But we are each given a calling on our lives that we are expected to fulfill. Malachi is my calling. Your calling is something completely different, but MOST IMPORTANTLY your eternity in heaven isn’t based on your works here on earth. Christianity is about your relationship with God, and when your relationship is strong, your actions naturally lead you to act more like Christ. So my unconditional love for Malachi isn’t something I have to “work hard” to have, it is a byproduct of my relationship with Christ.

This week’s Bible study lesson focused on 2 Corinthians 12:7-10. If you haven’t done a devotional today, I encourage you to look up those verses and try to figure out why we should boast about our weaknesses!

Thank you for checking in on Malachi. Join us in praying against whatever sickness might be brewing in his body. And pray for some rest for a very weary mom and dad.

Much love,

Jake, Leah, and Malachi

If I had to come up with one word to characterize this week, it would be “laughter”. Malachi has had a serious case of the giggles all week long- so much so that we had to step out of service at church today because Malachi kept laughing at the word “God”. His laughter is absolutely contagious. Don’t believe me? Here is a little video:

He has laughed at so many things this week that I would bore you with the list. Here is another video from today as I took off his leg braces…he loves that velcro:

Truthfully, it has been a great week! While Malachi loved our trip north last week, he was visibly excited to be back in his environment and routine. His sleeping routine has been rough, but everything else seems to be running smoothly!

Malachi has been eating like a champ and trying at least one new food a day. If he hears me chewing, he immediately gets my attention and opens his mouth for a bite. I now understand what all those mom’s of toddlers are talking about when they say they have to hide in the bathroom to eat a cookie in peace! His favorite new food of the week is bananas mixed with peanut butter. He is still learning, so it is definitely a messy process but he loves every second of it.

We are also seeing less seizures than normal, which is so refreshing. In fact, just a few minutes ago Jake and I were discussing how Malachi had not had any today, and I cannot remember the last time I could say that. As we discussed the rare but wonderful change, we remembered that he had a massive bowel movement this morning around 4am, and we can’t help but assume that this has something to do with his seizure free day.

We have a very exciting appointment this week as we will get to meet with the new epileptologist at our nearest children’s hospital. I know it sounds strange to be excited about a neurology appointment but it is always nice to get a fresh set of eyes on Malachi. He is such a complicated case, and I would love to get some new perspectives on how to stay as seizure free as possible while also limiting the amount of medications we give him. In an attempt to help the new doctor get a full view of Malachi, I have filmed his seizures this week. I have been back and forth about sharing the video with you, but the more I have thought about it the more I feel led to do so.

There are so many types of different seizures, but most people only have one mental image of what one looks like (typical convulsing). Malachi has several different types but his most common one is his asymmetrical tonic type. He always rotates his head to the hard left and will bend his right arm inward. When he does this, his arm and head are literally impossible to move or unbend. He has the strength of an ox during these episodes. His seizures typically last less than 10 seconds, and if they go longer we say it was a “bad one” and will exhaust him tremendously.

The most frustrating thing about these seizures is that they are triggered by discomfort- mainly trapped burps, and will happen over and over again (several in one minute) until we alleviate the discomfort. It is for this very reason that we don’t leave him alone with others. He will literally have seizure after seizure until we get his burp out (very hard to do when he is toned like this) and make him comfortable again. Our date nights are not worth his continual seizures and discomfort. Maybe one day, but not right now.

On a typical day Malachi will have 4-6 of these episodes and they are more common in the evenings. I can hear him seizing from a room away just by the change in his breathing. He has them in the car frequently, requiring me to pull over and try to get his burps out. If he seizes for longer than 30 seconds, you can almost bank on him vomiting and possibly cutting off his air supply during the vomiting.

So all that being said, here is a video of his seizure. DO NOT FEEL COMPELLED TO WATCH THIS as it is not pleasant to witness, but if you are in his circle it may be good to become educated. So often we hear people giggle and laugh saying “Oh I must have scared him” when he goes into a seizure, not understanding that he isn’t jumping in fright…he is having a neurological episode. If you do watch note his breathing, his post-seizure aura, and his susceptibility to pop right back into another episode.

Changing gears completely…

This week has been a great one! If you remember, about a year ago I connected with a mom in Chattanooga with twin boys- one of which also has cerebral palsy. We got the boys together yesterday and went to a local apple festival followed by some time at a handicap accessible playground.

Malachi got to ride the smallest pony I have ever seen! He also got to pet a llama, donkey, and a goat.

 

This was my first visit to our local accessible playground, and I have to say that I was so impressed- it was even better than the one we visited in Ohio. There were lots of noisy things on Malachi’s level for him to hit and move. His absolute favorite was a contraption that made a noise that sounded like a toot. Such a boy! He laughed for a solid five minutes at the silly noise. When he is truly belly laughing he can barely keep his eyes open.

Jake and I have been able to accomplish so much this week in regards to prepping the house to be sold! Last night we were overcome by the stinky smell of a skunk close by. It was a little too close for comfort, so Jake went and checked the crawl space today and found droppings. In all honesty, it is just too ironic to be mad about haha! We are listing the house on Wednesday with the realtor, and it just so happens that for the first time in 7 years a skunk has moved in underneath our gem of a home. Lovely. And truly comedic timing!

If you knew me pre-Malachi or if you know me now then you are fully aware that I love being busy. Now the word “busy” takes on a whole new meaning now with Malachi, but I crave the feeling of contributing to my worlds. For the last 3 years, I have been very much in survival mode and not able to participate as much as I would like, which has been a hard thing for me. Slowly we have been able to add some of our busy-ness back…coaching the soccer team, continuing as youth ministers at the church. With soccer ending this week, Jake and I have found ourselves with some more free time than normal and have taken on leading an 8 week Bible studies on Sunday evening for adults and teens.

I know what you are thinking…we are crazy. But to be be completely transparent, I have a difficult time making time to get into God’s word throughout the week. By taking on this class, I have a responsibility to dig into His word and share it with others. Tonight was the first lesson, and I am feeling so incredibly refreshed to be able to spend time talking to people about God.

Fittingly enough, this week’s lesson was titled “I am worn out” as we talked about the many ways we create anxious toil for ourselves. It was such a needed reminder for me this week that as humans we are going to wear down and become weary- physically, mentally, emotionally, and spiritually. But the Bible makes many references to finding rest for our souls in Christ.

We talked about how even Christ needed rest in his ministry, and how we are instructed in Hebrews 4:9-11 that the Sabbath Rest is God’s gift to us, and we must be diligent to enter that rest.  We also talked about how Jesus did not heal EVERYONE and go EVERYWHERE…he simply followed the leading of His Father.

Sometimes we forget to ask God to lead us daily in our tasks and appointments. Our scripture for the week is Isaiah 40:28-31. I encourage you to look it up and see if it speaks to you specifically!

Please keep Malachi in your prayers as it seems like God is working wonders in him. We will never stop believing in a miracle for our boy.

God bless,

Jake, Leah, and Malachi

 

This week was Jake’s “Fall Break” so we took advantage of the down time and made a quick trip to Ohio. Jake was able to golf in a tournament with his family and I was able to make some stops to visit family! Traveling with Malachi can be difficult, so I found myself hesitating even two hours prior to leaving for Ohio, but I keep reminding myself that Malachi will only get bigger and more difficult to manage in new places so we need to take advantage of these opportunities while he is still small.

Malachi has actually handled this trip better than the other attempts, and couldn’t wait to arrive. He was all giggles on the trip up and I am hoping our return trip today will be just as pleasant! We have been making use of his cot in the car for diaper/outfit changes so I took a picture to give you a visual of his fun new setup.

On Saturday we ventured out to a wheelchair accessible playground nearby to see how he would do. The sun was his enemy as always (kids with vision impairments have a hard time handling the sun), but he did seem to enjoy himself.

As far as seizures are concerned we have been very pleased that this trip has gone so smoothly. Our last trip up set him off a bit and he had a major increase in seizure activity. We saw a slight spike and had some car vomiting incidents, but overall nothing compared to last time.

Prior to our Ohio trip, we had a very productive week. My biggest report is letting you know that Malachi is now obsessed with table foods! Lately he has shown interest in what we are eating and will move his mouth as if to ask for some. We desperately try to reward any type of communication so I have been offering him some of my soft foods by putting a tiny smear in his mouth. But one afterno0n we were eating sandwiches and I found myself not able to give him a taste of anything soft. I did however have a dill pickle so I figured I would let him taste the bitter juices. HE LOVED IT! He even let me put it in his mouth and tried to take a massive bite causing me to panic haha…if those front teeth had been in he would have succeeded.

Now he is hooked! This week alone he has tried: cantaloupe, banana bread (a BIG hit), beef stroganoff (with chunks of meat in it), broccoli cheese casserole, potatoes, ranch dressing, nacho cheese, cupcake icing, and some mum teething bites. We have started trying to introduce some baby food snacks, like the dissolve able cheese puffs. We just cannot get past how much progress he has made! We met with the speech/feeding therapist who absolutely agreed that he is ready to start some solids.

Here is our party animal after some cupcake icing at a birthday party. Sugar!!!

With Jake off this week, we have been able to make some major progress on house cleaning and repairs. We are planning to list the cabin a week from Wednesday and have been praying fervently for the potential buyers that God may send our way. We were also able to take some time this week to meet with a mom who has two beautiful twin daughters with CP. They are both in power wheelchairs when out in public, and the family recently built a house that is fully accessible for the girls (they are college age). It was such a needed meeting, as she was able to share some of her suggestions with us for when Malachi is older. We are still analyzing and probably over-analyzing house plans and features to make sure we do this right!

Malachi even went to church nursery for the first time this Wednesday! The teacher sent me a short clip, and you can just see his fascination with his friend.

Malachi’s sleeping schedule is back on the fritz- this happened prior to Ohio but traveling has not helped. He is oddly consistent with his routines, falling asleep around 11 and waking up again at 2ish. He will stay up for a few hours and go to bed around 5:00 for another hour and a half and then wake up for the day. That means we are running on between 4-5 hours of low quality sleep. In fact, right now it is 4am and I am contemplating packing up and heading for TN!

This week has been such a blessing for me as I have been able to see some major changes with Malachi cognitively. The anticipation on his face as we made a 7 hour drive to Ohio was just precious, and he literally squealed with joy when he heard his grandpa’s voice. Every morning he has been waking up with pure excitement as he strains to listen and see if any of the other children in the house are awake yet. I have seen so much recognition and remembrance as we have made our rounds to see relatives and it is so encouraging. God is good.

As much as I wanted to type a devotional, my legs are now officially numb from trying to hold this food loving chubby kid and type on a laptop, so maybe we will try for next week! Thank you for taking the time to check in on Malachi and as always, thank you for keeping him in your prayers.

God bless,

Jake, Leah, and Malachi

I just unpacked the last bag from our weekend in Asheville! I think that might be one of the most satisfying chores when it is completed. One of Jake’s friends asked him to be a groomsman, and oh wow was it a beautiful wedding! I will give more details a little further down on this entry.

Our church directory photo came in! I absolutely love it. It may have taken 25 minutes to get a good one, but we are pleased. I was a little sad to see that Malachi’s shirt had drool on it. I had asked them if they would be willing to photoshop that out of the picture, but they said that it would cost us $40 to do, so I took a picture of the picture and did a little two minute editing myself. It may not bother anyone else, but for some reason it is important for me to do these things for Malachi. It has nothing to do with my pride or anything of that nature, but I always want to do my best to treat him with the dignity that he deserves, if that makes sense.

As far as the week went, it was a busy one but as you know, that is our normal. Malachi has been exceptional at horse therapy now that the temperatures are cooling down. He is so much more eager to do what he is asked and hold his body up. He will do almost anything you ask if you shower him with compliments after he completes the task. That is his sole motivation in life…to get compliments! His joy is so contagious.

Tuesday was our most challenging day as he had to be at the hospital at 7:45am for a neurosurgery appointment (routine check up-don’t panic!) That goober stayed up until 3am giving us a very short 3 hour rest before we had to be up and out the door to make it to the hospital on time. Poor little Malachi was exhausted as I tried to rouse him awake to head out the door. If I don’t wake him fully and burp him before he goes into his car seat he will start gagging, coughing, vomiting, and ultimately pooping due the the first three. It took me 15 minutes but I got a good burp out of him and sped out the door. We made it about two miles down the road before he started throwing up leading to the way-too-common gas station parking lot outfit/diaper change.

Needless to say, I was a frazzled mess by the time we made it to the hospital. We registered and then the waiting game began. An hour later we were finally back in a room, and our actual appointment took exactly 4 minutes. “Any changes with Malachi’s shunt?” Nope. “Any new concerns?” Nope. She also asked about his seizures, but since he is followed by neurology (a different specialist) it was more for conversation’s sake. We made our next appointment and were sent on our way. Truthfully, I am thrilled that his neurosurgery appointments are that simple even though they are dreadfully annoying. Malachi’s shunt story could be much more complicated so we are counting our blessings.

It had been awhile since we had been inside the hospital, and again my emotions started to get away from me. I had to mentally block out the hallway as I walked through it, remembering the many times Jake and I had walked it on the way to the NICU. There are just so many memories attached to that building- most of them unpleasant. I could feel myself getting a little off track with my emotions and quickly pulled them together as I headed down the the waiting room.

For some reason, these neurosurgery appointments are exceptionally harder than others. While most of his specialists are pediatric specific, this one is open to all ages so we regularly see adults with disabilities in the waiting area. I have to consciously make an effort to not focus on Malachi’s adult years as thinking about those things causes my system to shut down with worry on how I will be able to care for him. So when I am in a setting surrounded by families that are caring for adults with disabilities I have a REALLY hard time. I sat over to the side and just focused on Malachi but I couldn’t help but hear the conversations between the families.

One mom was proudly telling another that her daughter was now the oldest patient at the Boehm Birth Defects Center (our neurosurgeon), as the previous title holder had recently passed away. The daughter had just celebrated her 51st birthday. I immediately became overcome with emotion as I let my mind wander into Malachi’s future. I know every mom has these worries and fears, but Jake and I have to face the reality that Malachi might be called to be with Jesus sooner than other children. I recently read an article on Cerebral Palsy that probably did more damage than good. Here are a few of the statistics:

• A child of two who cannot walk, feed, or dress themselves and has severe learning difficulties, and is blind has a 2 in 5 chance of reaching the age of 20 years old.
• Of 100 children aged five who cannot walk, feed, or dress themselves, 63 will live to at least the age of 20 and 50 will live to at least the age of 30.

While Malachi’s CP alone does not necessarily affect his life expectancy, there are other factors that contribute significantly, like his epilepsy. These thoughts absolutely cripple me at times, and are a new way the devil has been attacking me.

A few years ago I read an article about a father who had a gravestone specifically designed for his son with disabilities. The boy passed away at the age of ten and was eerily similar to Malachi. This is an picture of his gravestone.

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I don’t know that a more powerful gravestone exists. Every time I see this photo (even now) I am overcome with emotion. The father talks in an interview about his son’s fully healed heavenly body, a much needed reminder to me that the pain Malachi experiences on this earth is temporary. Malachi will one day be running on perfectly straight feet. Malachi will embrace me with a big bear hug and hold my hand as we go on walks together. Malachi will be able to hold up that heavy head of his and tell me stories. Malachi will be able to see his world through perfect eyes. And while these thoughts bring me so much joy, there is so so so much pain the tries to block it.

And yes, I am bawling over here right now. That picture…every time.

So moving on to some happier thoughts. Malachi is a ladies man. While he loves to hear all children and babies talk, we are noticing that he has a preference for girl’s voices. He will flash that big smile of his and sometimes giggle when they are near him. And he is an equal opportunity flirter and has even been flirting with the teenage girls on our soccer team. He has a new “move” where he tucks his chin to his chest and cuts his eyes over to them, and then moves his eyebrows. No joke. He raises his eyebrows at them as if to say “Who, me?” I tell you what- he is one silly kid.

While Jake was dealing with wedding festivities, Malachi and I went on a mommy son date to get him some warmer clothes for the season. We ventured into Asheville and found a TJ Maxx to explore, and it is so interesting to me how different areas of the country react to Malachi. The people we encountered seemed almost bothered by his presence, frustrated that he was taking up so much of the aisle. I hate to make assumptions about an entire population, so I didn’t mention it to Jake, but after a lunch outing today on our way home he brought it up to me. He said the same thing that I did, and talked specifically about the staring. Conversations stop, eyes stare, and it feels as if judgment is passed.

I try to hold my head up high in those moments, as it is easy to get self conscious. I was a little bothered after my Saturday shopping trip and headed over to the wedding. There were no handicap spots left and no ramp so I found a remote spot close to the grass, hoping I could manage to push Malachi up there by myself. As I was throwing on his wedding clothes I looked over the see two of Jake’s teaching friends walking towards me. They had seen me pull in and without being asked had come over to offer their help. I breathed a big sigh of thankful relief as they pushed Malachi up the gravel road for me.

That was a moment that I desperately needed. It reminded me of God’s providence as he has placed us in a community that 100% accepts our family as we are. We could be anywhere in the world- or in a community that is not tolerant of Malachi’s differences. But instead God has placed our family in a small town where people love Malachi as much as we do. And to see Malachi’s big grin as he looked over his shoulder at his two buddies pushing him up the grass just warms my heart. That little boy knows what is going on. He knows when people show him kindness. And to hear them talk to Malachi like the three year old that he is was just the refreshing reminder that I needed at the time.

Malachi loved the wedding, although we spent most of the ceremony hiding in a quiet area near the back. He thinks moments of silence are particularly funny and tends to speak up. The reception proved to be a little much for him, so we played it safe and stayed on the outskirts. I took him in to the center of the reception one time to see some friends, but the volume and activity around him sparked his seizures. He had three big ones in a row, and panic set in as I realized that I had not prepared for an incident and all of our towels were back on the outskirts with his chair. We quickly made our exit back to our quiet area!

Here are some photos from our evening! And yes, I sing through my teeth in all pictures with Malachi in an effort to get him to smile.

The bigger Malachi gets, the more difficult weekends like this become. He is definitely taking a toll on my body these days, particularly my back. In addition to him weighing 35 pounds, he wants to wiggle and move making it very difficult to keep a hold of him, as you can see in this picture. But he loved the adventure and it was nice to get out of our routines a bit.

Malachi’s favorite part of the weekend was getting to sleep in the big bed with his daddy. I usually make Malachi sleep in his crib for the first two rounds of sleep, and when Jake leaves in the mornings (and Malachi wakes back up) I put him in my bed with me. We took a portable cot with us this weekend, which was absolutely amazing by the way. It fold up like a portable chair and I was able to keep it in the van to be a portable changing table for Malachi. He slept decently on it at night but eventually ended up in the bed with us. Jake made the mistake of saying something in his sleep and Malachi’s eyes popped open with excitement. Then Jake made another rookie mistake of reacting with an “Owww” when Malachi hit him in the face, trying to figure out where his daddy was laying. GAME ON! Malachi continued to hit Jake in the face for the following ten minutes, and at that point there is no sense in trying to get him calmed back down. He and Jake played and cuddled, with Malachi loving every second of his time with his daddy.

I think I have officially jumped all over the map with stories and topics for this entry. Jake took Malachi when we got home, allowing me to take a two hour nap. My body doesn’t quite know what to do with all of this energy! Thank you for sticking with my randomness.

As far as specific prayer requests, please pray for Malachi’s communication and my wisdom on how to help. He has been so eager to communicate lately and I just lack the knowledge on how to help him. Pray for Malachi’s health to remain strong, as one of our house-guests in Asheville casually shared that he is battling mono. Yikes! This is our first winter without tonsils and we are really hoping that Malachi’s system will be able to fight off illnesses. Also continue to pray that we see more miracles in Malachi’s life….that he would be able to defy statistics and guesses about his future. And that mom and dad would find a peace in whatever God has written out for Malachi’s life.

We love you.

Jake, Leah, and Malachi