The Contrite Heart

Early this week we started a new medication regiment with Malachi to see what we could do to help his tummy. His ultrasound came back clear so we were hoping we could get his discomfort (that leads to seizures) under control by doubling his delayed release medication. The first few days were shockingly better with very few seizures. I was so confident we had found a working solution.

But Friday rolled around and the discomfort returned with a vengeance. Malachi started having massive seizures where even his face convulsed which is new for him. We battled seizure after seizure and his tummy was rock solid. I was able to try a new emergency medication for severe tummy aches like these and thankfully it did calm the cramps for short spells, but the underlying issue is still lingering.

When Malachi goes through these spells he is hands on 24/7. It isn’t safe to let him out of your sight and he is the most comfortable being held. And he definitely can’t be laid flat as it seems to trigger the seizures so we camp out in the living room and try to manage the best we can.

This week we will be tweaking his medication a bit more hoping to find the perfect combination. After two full days of severe seizures Malachi is wiped out. On days like these his brain doesn’t allow him to fall asleep even though his body clearly needs it. Today he has only had a handful of rough seizures so I am hoping we are back on track. He has actually had two biggies while I have been typing this blog.

That also means mama is running on fumes so if I type some odd things tonight just overlook them!

This week the boys brought home their first puppy, Shiloh!

I hope you all are ready for picture overload.

Malachi had already dealt with some intense seizures throughout the day on Friday, but he was on pins and needles as we went through our final training session. When we started wheeling him towards the car to load up Shiloh he started giggling and couldn’t stop. His excitement was so contagious and his happiness won out over the seizures for those few hours.

Shiloh has been absolutely amazing. He is so gentle and kind with the boys. Last night he walked over to Malachi, climbed up in his chair and cuddled in a ball on Malachi’s lap. Malachi was enjoying every minute of the hour long snuggle.

And Levi has been amazing with Shiloh. Oddly enough, his behavior seems to have improved as he is seeing us train and correct Shiloh.

Next week we will go back to pick up Tuck, so this week we are focusing on training them to fit our lives. We had family night Bible study at the house this evening and our guests couldn’t believe how well behaved Shiloh was! It really is impressive and like nothing I have ever seen.

I had to laugh as I thought back to an internal conversation I had with myself several months ago. I remember the exact spot I was standing when I thought to myself: “I think it is time to get dogs again.” And then I proceeded to talk myself out of it, saying “If I can find a puppy that is fully trained than I would do it in a heartbeat. But a puppy like that doesn’t exist.” Our life is very unpredictable and I knew that adding puppy training to the list of daily duties would be very difficult.

It was a few weeks later that I first spotted the post about these puppies. And then it was a few more weeks of me dragging my feet, coming up with every reason I could think of to not pursue. But we know see how that worked out, and I truly can tell you that I have no regrets (so far) after seeing Malachi with Shiloh. It is just what he needed.

The boys soccer team that we coach is wrapping up their season in the next two weeks so we have been packing in the games these last few weeks. The kids both really like going and hearing daddy and mommy shout so loudly. Levi mimics everything dad says and Malachi clings to every swirling emotion we toss out there.

Levi has been a lot to handle this week. He is in a stage of life where you can’t turn your back on him for even a second. And yes, that is half of a giant Easter egg on his head.

I don’t know if you can sense the theme in these…this boy loves food! Daddy wanted some tacos at 10pm after a game but Levi got ahold of them before dad did. We have cut his feeding therapy down to one session a month and would love to be able to eliminate it altogether but there are still some sensory issues we are working through.

This week I have been mesmerized by Levi’s empathy. Empathy is not my strong point. I find myself being embarrassed to admit that but I will say that it is something I am making a concerted effort to improve. It just doesn’t come naturally like it does for Jake.

Jake is oozing with empathy and a tender heart and Levi has most definitely inherited his daddy’s heart…which is a wonderful thing.

This week we were watching a video compilation of babies getting hearing aids for the first time. I explained the video to him before we watched it together, explaining that some of the babies had never heard their mom and dad’s voices before. We watched it together and I looked over to see a giant smile on Levi’s face and tears streaming down his cheeks. He caught me looking and said “Me crying!” And I asked him “Are you sad Levi?” To which he replied “No, me happy!”

The very next day I was speaking some words of affirmation to Malachi and I caught Levi listening in. I told Malachi “You are so loved by everyone who meets you, and especially God. He made you so special and so amazing with such a kind heart…”

I glanced over to Levi and saw his bottom lip quivering as he smiled and listened to the words. I asked him “Are you okay Levi?” And the floodgates opened. He began sobbing and gave Malachi a big hug. I asked him why he was crying and his reply melted my heart: “Malachi so amazing.”

Seriously y’all. He has such a tender spirit and God has blessed our family with such a pure hearted empath.

Confessions of a special needs mom/wife: this life God has called me to requires a lot of sacrifice…and I am not always a willing participant.

If I am being honest, this is one of the biggest argument topics between Jake and I. In my head I have created this idol of wanting “equal sacrifice” as I desire so strongly to have someone else to share some of the bigger burdens with. Someone to share the zombie moments with, the exhausted beyond words moments, the weary and emotional moments. But Jake has to function in a career so asking that of him just isn’t feasible.

While we share many of the same daily challenges with parenting, the parts that require major sacrifices of time and rest often fall on me as mom. I am in a good mood right now, so I will openly acknowledge that this is how is has to be. But catch me in a bad mood or a “6am and still wide awake” mood and I will be very bitter about this equal sacrifice thing.

God is not a God of equal sacrifice. He doesn’t play the comparison game that we like to play with one another. I am convinced that the game of comparisons has been created by the devil himself as he knows that if we keep looking to the left and right it will keep us from focusing on God.

In Matthew 25 Jesus tells the parable of the talents.

“Again, it will be like a man going on a journey, who called his servants and entrusted his wealth to them. To one he gave five bags of gold, to another two bags, and to another one bag, each according to his ability.

The parable continues on and tells us what each man did with his bags of gold.

5 bags man went and put his money to work, earning five more bags.

2 bags man did the same and earned two more.

1 bag man dug a hole and hid his master’s money in the ground.

If you are like me I am sure you are totally judging 1 bag man in this story. But how many times do we pull the same stunt in our own lives with the things God gives us? How many times do we take opportunities for spiritual growth that He hands us and bury them instead of finding ways to turn them around and honor Him?

The master in the parable returns to settle accounts this his servants. The first two men show that they have doubled the master’s money and his reply is this:

“Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come share in your master’s happiness.”

The 1 bag man explained his actions and the master’s response to him was:

”Take the bag of gold from him and give it to the one who has ten bags. For whoever has will be given more, and they will have an abundance. Whoever does not have, even what they will have will be taken from them.”

God did not play the comparison game with these three men, but rather he evaluated each of them based on what they had been given.

I know it seems a bit like a stretch but I like to view this story thinking about the bags of money being our burdens. We are not all designed to carry the same burdens. While Jake and I share the same beautifully unique journey with our children, God has designed us each to carry unique parts on that journey.

Yes, there are parts that I convince myself are “heavier” than Jake’s. But if I am thinking clearly I can find pieces that are heavier for him to carry as well. And in the end I need to focus on the pieces God has placed into my arms instead of comparing that stack to anyone else’s.

What opportunities for spiritual growth has God given to you? Have you buried those out of fear? Or have you decided to find ways to grow strong enough roots through them to bloom and multiply?

“Each according to his own ability.”

Those words are so special to me. They remind me that God knows me…even better than I know myself. He sees my ability and He hands me things that He knows I can carry.

When you start to see your full arms as a honor from God it changes how you react to them.

Psalm 51:16-17 “You do not delight in sacrifice, or I would bring it; you do not take pleasure in burnt offerings. My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise.”

I foolishly think that God wants me to carry my burdens well. But the more I dwell on this the more I think that sometimes it is in our broken spirit moments, moments that strip away our pride and self sufficiency, those are the moments that please the Lord.

It is not my time sacrifice, my sleep sacrifice, my constant sacrifice that please the Lord. It is my spirit acknowledging that I can’t do this life at all apart from Him that He delights in.

So this week I am embracing the contrite heart. I am accepting that equal sacrifice doesn’t exist, nor should it. Each of us have been chosen by God for different tasks, and this week I am choosing to find honor in my heavy load.

Much love,

Leah

Grace

This week we played the game. It sounds like cynical wording but seems to be the only real way to sum up a side of the special needs world that I didn’t know about before having children.

The hours of phone calls and phone tag with nurses, doctors, and pharmacists. The boys are now requiring three separate pharmacies for medications and coordinating all of the refills and recent prescription changes has been more challenging than I had hoped.

With typical children you go to the doctor when they are sick or need an annual physical. But when you have medically complex children you rotate seeing specialists every 3, 6, 9, or 12 months and that is if everything is going well. They are extremely routine appointments where you just touch base and make sure that everyone is on the same page and doing well. When you have TWO medically complex kids it leads to a lot of these ordinary, relatively unnecessary (were it not for protocol) appointments. Now, I completely and totally understand why they require them but they can get very cumbersome.

So we float from specialist to specialist and have the same conversations over again, like it is on some odd repeat button. Let me acknowledge that I am SO incredibly thankful that our conversations are boring, as that hasn’t always been the case. I pray that life continues to stay this boring and mundane!

In addition to seeing several specialists this week for each boy we also went for a fitting for Malachi’s wheelchair and an ultrasound on kidneys, spleen, liver, etc take make sure there isn’t anything specific causing him pain at night. I haven’t heard anything from the doctor which I like to believe is a good sign.

Levi still struggles tremendously with medical PTSD and requires major mental preparation before each appointment day. Even then, the anxiety grabs ahold of him and he was very stressed about Malachi’s ultrasound. I snapped this sweet photo and it made my heart swell. Levi was holding Malachi’s hand, but more to reassure himself than anything. And Malachi was his sweet self, enjoying the special attention.

As I watched their interaction at the appointment I couldn’t help but flash back to our pregnancy announcement from 2017.

Levi has become the most amazing sidekick to Malachi, and seeing how Malachi can help calm Levi’s fears reminds me of how much their relationship is mutually beneficial. In fact, I truly feel with all of my being that anyone that has a friendship with Malachi walks away seeing mutual value in the relationship. Malachi isn’t just a “taker” but is in fact quite a “giver” of such special gifts. He continues to bless others in intangible ways and give us a glimpse of the joy the Bible talks so often about.

Speaking of sidekicks, this weekend we will bring home one of our puppies. We are transitioning them to our home one at a time to help them get settled and trained in our environment. This week during our training session Malachi got to “walk” the dogs, training them where to stand when being tied to his chair.

The timing couldn’t be more fitting as our bears are officially back! One of the benefits to staying up so late at night is catching them in the act of messing with our things. This short and very chubby bear stopped by for a visit- I went on the back deck and yelled at him, but he was clearly not intimidated as he slowly walked toward the tree line.

We spent the majority of our free time outside this week working on a fundraising project for our youth group. The boys loved the playground time and the fresh air.

I received my second Covid vaccine this week, and the process stressed Levi out tremendously. He is leery of anyone in medical gear approaching our car thanks to some previous Covid tests. I plopped him in the front seat with me while we waiting in the line, and it distracted him enough to keep him from full panic mode. I did have some side effects from the second shot if anyone is curious. I had a slight rash at the injection site, some pretty frequent heart palpitations for 3 days, and a few random times of my hands going numb. The day after the injection I was pretty useless, exhausted completely and trying to simply keep the kids alive. But that exhaustion and achy feeling went away after 24 hours.

We are still dealing with some major sensory issues with Levi, and while he is making huge oral motor improvements he still struggles with eating and sensitivity. Since he didn’t get the chance to eat by mouth until later in life he is very easily triggered when things go into his mouth. It has made brushing his teeth quite a challenge so I have been working with his feeding therapist to be able to get him to a point where we can brush his teeth without major fighting and gagging. He is still distrustful of someone else holding the toothbrush but absolutely loves sucking the toothpaste off when he gets a turn.

Confession of a Special Needs Mother: I live with a daily fear that Malachi’s death will be my fault. And the idea of living with that guilt makes me queasy.

Much like a newborn, Malachi lacks the ability to get himself out of dangerous situations. In a single day I save his life at least a half dozen times. With his lack of body control he gets himself into positions where he is unable to breathe. In the bed he turns his head so far and arches in a way that his mouth is stuck up against the mattress requiring me to re-position him. In the car seat he has recently started turning his head to the far right and getting stuck with his mouth against the side of the headrest in the seat. When he has a seizure he tenses so hard one direction that anything next to him becomes a threat to his safe breathing.

Saving him in these moments has become so second nature, as it should be. It is one of those things that I don’t realize I even do anymore, like an instinct, and they no longer rattle me like they used to. But it is because of this that Malachi rarely leaves my side and eyesight. There have been so many close calls when I hear a faint muffled breathing and find him yet again smothering himself unintentionally. At night I sleep within inches of his face so when his head moves it hits mine and I wake up and can reposition him.

But I always worry about “that one time”. That one time I won’t hear the muffled breathing, or that one time that I am in such a deep sleep that Malachi’s movement goes undetected. That one time that I left him with someone that didn’t know to watch him so closely. And the fear of having the acknowledge that his death is something I could have prevented eats at me.

While I acknowledge that fear of imaginary death situations seems so irrational and odd it still consumes my thoughts often.

But this is where I find my faith needing to kick into high gear. If I believe that God is the creator and taker of life, I have to continue to believe fully in His providence and His timeline. Regardless of the circumstances surrounding Malachi’s death, I choose to believe that God will not take Him from this earth before his divinely appointed time.

And while I know this and it brings me comfort, I still circle back to the same exact irrational thinking.

When I reflectively look at my fear in this, I take it a bit further and recognize how hard it is for me to offer grace to others and truthfully to myself. God has modeled what a beautiful and free gift grace is, but for some reason I continue to use it sparingly.

It almost seems as though I have accidentally and unintentionally started to take ownership of grace when in fact it should be a reflection of the Father’s grace that we are offering.

In 2 Corinthians 12 there is a chunk of scripture that has sprouted roots in my heart over the years. If you get time I encourage you to read 2 Corinthians 12:7-10 and ask God to show you what He wants you to grasp from it.

But there is one verse in there that my mind has been focused on: “But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses so that Christ’s power may rest on me.” (Verse 9)

His grace is sufficient for us.

Our grace will never be enough. It is too polluted with ulterior motives and attempts to control. It is His pure and beautiful grace that sustains and covers us in our darkest moments.

Here I am worried about a lack of grace from others and a lack of grace from myself in the darkest strands of my imagination of moments with Malachi. But God is clear that His grace is the only one we need to be concerned about. And if those dark moments ever become a reality, I am to rest in the fact that His grace is sufficient.

His grace is always sufficient.

While I am sure that not many of you can relate with the idea of having to rescue your child from death on a daily basis, there are other areas of your life that you have learned to fear. There are the dark crevices we don’t discuss with others that plant a garden of fear in our hearts and minds that we continue to till and try to harvest from. But the crops of those fields lead to death.

My prayer this week is that we are all able to rest in the knowledge that His grace is sufficient. Grace is built on the premise of us making mistakes and oversights. We were never meant to live sinless, flawless lives. We were meant to have moments of weakness that throw us into the hands of God.

His grace is always sufficient.

Much love,

Leah

Distractions

Our week was wonderfully uneventful and I am so pleased to share that Malachi has not had any major night seizure episodes at all this week! The small/medium seizures are still happening but none of the massive ones. He is still staying up until around 3am but he has locked into a wake up time of 8:58 for the last four nights. It has been awhile since he locked into a wake up time like this, so I am really hoping this one sticks around for awhile. I can function relatively well on 6 hours of sleep and after the rough weeks we have been having it truly is a blessing.

The boys got much needed haircuts this week; here is a little before and after snapshot of Malachi.

In the photo above he is wearing one of his new church shirts. This week we had to go into a store to find new shoes for Levi and I noticed Malachi seething a bit with some jealousy. I could tell he didn’t like that we were getting something for Levi and not him so we headed to the big boy section to find him some new shirts for church. He was so excited this morning to get to wear one, and was very particular about it being the orange one. I love how opinionated he can be.

Levi’s imagination is starting to take off and he is so good about including Malachi in his adventures. It makes me smile to see the initiative he takes with his brother. You can also spot his new shoes in the background. With his shoe insert braces finding shoes can be a bit more difficult. They have to be roomy enough for the braces to fit in addition to his feet and still be comfy. Because of that we typically just use one pair of shoes for everything with Levi to prevent us from having to swap the braces in and out of multiple pairs each week.
We are counting down the days until Jake’s summer break comes! Having him here to help with the boys is such a blessing to us all.

We went for another round of puppy training this week and brought out the chair for the dogs to start to become acclimated to. The goal is to be able to tie them to Malachi’s chair and have him “walk” them. She is also starting to work with them on the command “hold” so when Malachi is having a seizure they move their bodies against his to try to re-center him. When he seizes he pulls his head very far to the left and can get himself in dangerous positions. We are still on target to bring home one dog in three weeks and the second one the week after that. Jake says he is more excited than the kids, but it is safe to say we are all pretty hyped up about them joining our crew.

If you don’t know me personally, I am a pretty basic gal. I don’t have a lot of jewelry and accessories, hairstyles, or things of that nature. The same goes for my home decorating style- pretty plain Jane and basic. Although I was once a fan of knicknacks I find them now to be toddler temptations and dust collectors. I tend to go more for sentiment and spiritual reminders.

We moved into our new home in 2017 and I was at the tail end of a very high risk pregnancy. Levi came just 6 weeks later and off to Cincinnati we went and all of my boxes with home decor stayed sealed in the basement until recently. As I looked through the boxes of trinkets I just didn’t feel like any of them fit the new home quite right.

About two weeks ago I was staring at a small table in our living room and it just “needed” something. I visited my boxes in the basement and found two things worthy of coming out of storage and making a comeback into our lives. The first was a Willow Tree figurine I spotted when Malachi was small. It is a mother holding her son, and she was holding him the same way I held Malachi to get him to sleep when he was little. The figuring struck me enough that I decided to purchase it.

The second is a framed painting of Jesus done by an 8 year old art prodigy named Akiane Kramarik. She had vision of Jesus Christ and painted a portrait that is absolutely breathtaking. While I can’t say with confidence that is what Jesus looks like I love the photo (Google Akiane Prince of Peace to see it in all of it’s glory).

I snuck these two pieces up from the basement and positioned them on the table, and it was maybe 30 seconds before Levi had his hands on both. Raccoon fingers McGee doesn’t waste much time investigating new things, so we had to lay down some ground rules about not taking them off of the table. As most three year olds do, Levi has developed brief rounds of amnesia and forgets the rules often and we find Jesus in the playroom, the shower, and under the couch.

One day this week I noticed both pieces missing and sent him on a search to find them and put them back. Later that afternoon I was having a patience-testing moment with the boys and anger had welled up inside of me. I glanced over at the piercing eyes of Jesus in the painting and noticed that Levi had arranged them in a way that struck me.

It led me to a new “Confessions of a Special Needs Mom”:

I rely on distractions to keep me from focusing on the chaos.

It isn’t accidental, but rather it is a very intentional and calculated way to keep me from lingering on the hard parts of our world. And the truth is, this isn’t a new tactic for me. It is something I have spent most of my life doing to avoid some hard things life has tossed my way.

I can start a project as quickly as I can light a match, and I am not a quitter. I will see that project through no matter how many hours it takes and how much mental anguish it may cause. I am a professional distraction maker, if that’s a real thing.

Are any of you able to relate with this? The ability to mentally take yourself away from the drama, the pain, the reality. It is a tactic that gives me the false sense I am in control of something, even if it is simply control over my thoughts and fruitless endeavors.

I am about to do something I try to be very cautious in doing. I am about to take a verse out of context (go ahead and gasp here). But I believe that the word of God is living and active, and the Holy Spirit can take even words taken out of context to remind us of our weaknesses in Christ.

In the book of Haggai there is talk of rebuilding the temple. The people kept making excuses for not starting the project, but God spoke through the prophets and told them that the time had come to start. He was tired of their excuses and distractions.

Haggai 1:5-6&9b “Now this is what the Lord Almighty says: ‘Give careful thought to your ways. You have planted much, but harvested little. You eat, but never have enough. You drink, but never have your fill. You put on clothes, but are not warm. You earn wages, only to put them in a purse with holes in it…Why? Declares the Lord Almighty. Because of my house, which remains a ruin, while each of you is busy with your own house’.”

When I read this verse I can’t help but shamefully see myself in the words. Oh how many times I distract myself with planting but do not harvest- there are so many empty returns in my busyness. How many times I busy myself with things I deem as necessary (metaphorically eating and drinking) but they just don’t fill me. Just like the wages in the verse, there are rewards on my busyness but they flow through the holes in my bag leaving me back face to face with the original issues that spiraled me into distraction.

Sometimes I allow the distractions of my “own house” keep me from visiting the throne room of God. Sitting at the feet of Jesus is the only place we can go to truly be filled. But sitting and looking into the eyes of Christ is something I secondarily turn to after my busyness hasn’t sustained me. That is something I strongly desire to change in my spiritual walk.

As I stared at the mother figurine so aptly placed at the feet of Christ’s picture I got the Holy Spirit goosebumps. Sometimes resting at the feet of Christ and pouring out our hearts to Him is a true act of worship.

Leave it to raccoon fingers McGee and a bunch of knickknacks to remind me of my how desperately I need to REST in Christ. How I need to set aside my projects, my chores, and my distractions and find time to connect with my Father.

Join me this week in thanking God for Malachi’s seizure stability and for the rest He has given me the last few nights. He is such a good God. Please continue to pray for miracles for my boys, that God will heal them head to toe and use them to display His power.

Much love,

Leah

“Yet”

There are weeks that seem to zoom by, acting as one giant day instead of accumulation of seven. This has most definitely been one of those weeks.

Something has been slightly off with Malachi and we have been dealing with some pretty terrible tummy aches at night only. These set off his seizures and I spend most of the evening trying to bring him some relief trying every trick in the book until he passes out, usually between 4-6am. When he has these episodes his heart rate goes up and his breathing changes into a very shallow breathing. He will projectile vomit and this drama causes his body temperature to increase for just a few short minutes. It is like his system is going haywire. During the daytimes he has been his happy, chipper self although he definitely is much more sleepy than normal.

I spoke with his Gastroenterologist this week and we have scheduled an ultrasound to see if there are any obvious spots of concern, like hidden kidney stones or something of that nature. We couldn’t get on the schedule until April 16 so I am hoping whatever the source of pain is for him that we can figure it out between now and then.

When we go through rounds of unknowns like these it takes a toll on all of us. We already don’t get a whole lot of sleep in our house, but running on 2-3 hours a day takes it toll mentally on me. It also is starting to really affect my body physically which is a new challenge to deal with. Without a few hours break each day from holding and maneuvering Malachi my body is yelling at me that it is being overworked. My wrists, back, and neck are so painfully sore from supporting his body, like I have overworked those muscles. The physical nature of caring for Malachi is something I didn’t realize would be so significant at this stage…it worries me about what is to come.

But I also feel so guilty talking about my aches and pains when clearly he is the one truly going through the misery!

We did have some fun this week with friends and family! And Malachi’s mean old front tooth finally popped through this weekend, praise the Lord!

We both have siblings that have also moved to Tennessee and enjoy getting together with them during the holidays. My brother and his family came over to play on Friday and the kids got to do another egg hunt.

We tied balloons to Malachi’s eggs so he could grab them more easily and he loved the adventure.

Levi is a terrible egg hunter, but fun to watch.

The boys each had an appointment this week with GI and we did weight ad height checks. Both of the kids still have a “failure to thrive” diagnosis which seems laughable at this point. Malachi is weighing in at 36 pounds and 3 ft 3in. Levi is 34 pounds and 3ft 1in. They are almost exactly the same weight and height which makes me laugh a bit. But they are both healthy boys and the doctor seemed pleased with their progress.

We spent some time training with our puppies again this week. We will be bringing the first one home on May 1 and the second one home on May 8 and are all very excited! Levi has been fascinated with the training process and likes that he can boss the dogs around.

The boys received a very special gift this week from some of our sweet friends. Levi has been riding it all weekend and Malachi sits up so tall when we help him sit on it! Look at how tall he is getting!!

Today is Easter Sunday and we were so happy to be able to worship together at church. Easter has been a significant holiday in my memories over the last 8 years as we haven’t always been able to attend services together due to hospitalizations. You learn not to take things for granted when there are years you have to do without!

I tried to piece together Easter outfits for us late last night, something I usually look forward to doing but with the lack of sleep I just allowed it move to the bottom of the priority list. I rummaged through a box of hand me downs and we made it work. We don’t do “dress shoes” in our house as there isn’t room for braces and inserts in most of them…and Jesus cares way more about the inside of our hearts than what we wear so we let those ideals go.

Levi grew restless during the service so I took him outside and he got to run around with one of his best friends. They were so sweet together so we snapped some photos.

We are still trying to avoid crowded places, something we did pre-Covid pandemic as well, so after lunch we drove up the river to a local barbecue place for some brisket. It is usually too busy for our comfort level so we get an order to go, but today it was quiet enough for us to take the boys in for a special Easter lunch.

The owners were so incredibly sweet and brought out cookies for Levi and a special hat for Malachi, which he is super excited about. We are at new stage with Malachi where he wants to do things separate from Levi. We are working to find ways to give him that independence he craves, and allow him to do big boy things that Levi can’t do yet but obviously that is a hard task.

I have been putting him on my lap and letting him “drive” up and down our very quiet road and he is eating up the bragging rights it provides with Levi.

We have also been trying to be more thoughtful about giving him opportunities to decide what he does in his day. If he has my control freak genes I am sure it has to be so frustrating to have every action, activity, and body position decided by someone else. This week we started letting him choose whether he stays home with grandma and Levi for soccer games or comes to sit on the sidelines with mom. He has been voting to go with me each time, and that special time away from little brother has been so good for him.

He has also been going to a neighbor’s house for tutoring each week and gets to spend some time away from mom and brother! It has been so good for him to feel that freedom that school used to provide for him pre-Covid. This week they made cookies, and as you can see from his sly smile he was thoroughly enjoying himself.

Confessions of a special needs mom: every single week I cycle through the 7 seven stages of grief. Sometimes I can cycle through them all in a 24 hour period. Special needs parenting is absolutely emotionally exhausting.

Stage 1- Shock and Denial

While this one comes and goes every few weeks, this one hit me hard one particular night this week. It was around 2am and Malachi had projectile vomited out of his nose and mouth. The discomfort of that put him into a seizure, and during the seizure he lost control of both his bladder and his bowels. Within 30 seconds I was literally covered from head to toe in bodily fluids of all kinds, as was the floor around us. He was upset and so I went into momma mode and held him close against me until he calmed down enough for me to set him down. I stripped him down to a diaper and (TMI here) stripped down all of my fluid covered clothing and went to get a warm washcloth to give him a sponge bath until I could get him in the shower the next day.

While I was getting the washcloth Levi started tossing the couch pillows into the puddle of vomit on the floor. I really don’t know why this struck him as a fun thing to do, but his three year old mind decided to go this route at 2am. I was angry at this point, more at circumstances than children and started yelling at Levi from across the room to stop. The yelling woke up a snoring Jake and he ran out of the bedroom and into our chaos. He asked “What’s going on in here?!?” And I just stopped in my tracks and looked around and back at him and started tearing up.

I said to him “This isn’t the motherhood I signed up for, Jake.”

Even though I live the special needs life each and every day, there are still times that shock me. I call these “reality check” moments, as they remind me of the long term nature of our trials.

Stage 2- Pain and Guilt

This one comes into play often- every.single.day. I can’t put into words the heartbreaking nature of watching your children suffer and being unable to stop the suffering. It has been years since we have gone 24 hours without a seizure. Each time I watch his body become overwhelmed by his brain I can’t help but feel pain in my heart for Malachi. And I struggle so much with the guilt of knowing I chose this life for him. Let me explain that a bit…

We had the opportunity to allow Malachi to pass when he was three days old. Jake and I made the decision to allow God to make that call and asked them to save him to the best of their ability. We have NEVER regretted making that choice and still firmly believe that Malachi’s timeline has been pre-determined by God. No decision from Jake and I will take Malachi from this earth before God’s chosen time.

But there is a guilt in knowing that the doctors presented this vision of our child having a life of suffering, and we CHOSE that life for him. So when I see the suffering I can’t help but flashback to that conference room with the doctors when we looked them in the eye and said “He’s here for a reason, we want you to save him”.

I am 100% confident that the guilt is placed in my heart by the devil. My God is not a God of guilt. Guilt is a chain that can so easily tie us down in a dark place so this is an attack I try to be very sensitively aware of.

Malachi is God’s child, not mine. And if I truly believe that then I have to believe that his suffering still contains purposes beyond what I can see.

Stage 3- Anger and Bargaining

This one hits a few nights a week, and my anger is aimed mostly at Jake. In my heart I find jealousy for him being able to live a somewhat structured life, and the ability to have distractions (like work) throughout his day. The seeds of bitterness can grow pretty quickly and manifest in some major anger towards him in the middle of the hard nights with Malachi.

I am venturing to say that resentment has more fertile soil to grow in the hearts of special needs moms.

Stage 4- Depression, Reflection, and Loneliness

Oh boy. This one truly hits me every week and is connected with the resentment I mentioned a second ago.

The special needs life is isolating. There are a million reasons that keep us from being able to connect on a deep level with other moms, and sometimes those moments around typical mothers do more damage than good when our hearts are not in the right place.

I have to prepare my heart before I am around “normal”. I have to pep talk myself to make sure I do not get tempted to play the comparison game because that game continues in my head long after the play dates end (the reflection part of this stage).

Stage 5- The Upward Turn

Oh how I love this stage, as it rejuvenates me! We have had lots of upward turn days in the last year and they are a gift from God. They refocus me on the good, and they bring rest for my soul.

It is in this stage that I forget we are a special needs family. I accept and relish our normal, and I am able to see how extra blessed we are in so many ways!

Stage 6- Reconstruction and Working Through

This stage hits after the upward turn for me and I find myself tackling projects that I have been putting off. I prioritize all the things I have been purposefully putting off to spare my weary heart, like planning medical trips and surgeries. We get fitted for new equipment and find ways to make life more doable. We restructure routines. And it naturally leads into the next stage…

Stage 7- Acceptance and Hope

Usually this is the stage I aim for on Sunday’s nights before I start writing the blog haha.

These moments come and go like water breaks during an intense soccer game. I look forward to the refreshing they bring, but I am also very aware that the feelings will be temporary. So I try to savor this stage and use it to build strength and resilience for what is to come.

That’s the unique thing about special needs parenting…the stages of grief do not go in any particular order. I can be in stage 7 one minute and back within stage 2 within the hour.

With typical grief there can be a healing and a closure that takes place. With special needs parenting the scar that begins to form is so easily ripped off with each new hiccup.

So why write all of this out for you?

When I started out on this journey I didn’t know all of this. I watched us cycle through these stages in our first NICU stay, and was so thrilled when we reached the acceptance and hope stage. We celebrated the victory of leaving the NICU and going home as a family of three. Then BOOM his seizures hit and we started the cycle all over again with a new diagnosis.

For years and years I exhausted my heart with the cycles, but also the disappointment when each round began again from the start. With each new diagnosis I started back on the grief treadmill and since I had run the race before I knew what was about to come around the next turn.

Part of my healing as been acceptance of the unknown. And while I don’t enjoy the roller coaster ride through these stages each week I recognize how much these stages have thrown me into the arms of God again and again and again.

Psalm 71: 21-26 “When my heart was grieved and my spirit embittered, I was senseless and ignorant; I was a brute beast before you. Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.”

I see so much of myself in this verse. Grieved. Embittered. Senseless. Ignorant.

And then comes that word that I love: “YET”

Our God is a “yet” God. He is a God that sees our weaknesses, our cycles, our arrogant independence and YET he continues to hold us in His hand, love us, guide us, counsel us. And in the end, despite all of our failures, He desires to spend eternity with us in His presence.

He is truly our strength and our portion.

The boys and I talked this evening about Easter and why it is so special. Levi is starting to understand so much and I feel this strong urge to start discipling him and sharing the joy of Jesus with him. We have talked about the easy parts of Jesus’ ministry but tonight I spoke with the boys about the harder parts I usually gloss over.

Our home is full of suffering moments, so I don’t know why I have always felt the need to not mention the suffering moments of Jesus when they are so relevant in our life.

Tonight we talked about Jesus on the cross and the emotions of the people witnessing the crucifixion that truly loved Jesus. We talked about Jesus walking out of that tomb and how everything happened according to God’s plan. We talked a lot about heaven and how Jesus is waiting for each of us there. And we talked about the good things waiting for those that love God with all their heart, soul, mind and strength.

We talked about how Malachi would run and jump into the arms of Jesus. How wonderful is it that Malachi’s first steps will be on a street of gold?! I explained that we don’t know which one of us will get to go to heaven first, but how lucky that person will be and how much we will look forward to heaven even more knowing we get to see that person again. By the end of our talk both boys were smiling and giggling thinking about heaven.

What an innocent, beautiful, and biblical view for my boys to grasp. Oh how I pray the world never pollutes the truth of God’s word in their hearts.

I don’t know if any of you find yourself on the grief treadmill right now, but I hope that as I jog on mine for the thousandth time you can find encouragement in the smile of contentment on my face. When life doesn’t give you closure, you have to choose to create contentment. And that is what I daily strive for, even in the hardest days and grief stages.

Just remember the “yet”. Don’t let the devil convince you there isn’t a “yet”.

Much love,

Leah