When Malachi was younger our days were filled with a ridiculous amount of appointments. We usually had to be at the hospital by 8am and went strong until dinner time. Our record is 27 appointments in one week! The amount of planning and preparation that each day required was indescribable.

Adding Levi into the mix amplified and multiplied those days of chaos but then COVID entered the picture. We finally got the breather that we needed from all the go-go-go and thoroughly enjoyed our time at the house. Our virtual appointments are slowly transitioning back into in-person ones and I am realizing that I am mentally out of shape as far as appointment days are concerned.

This week we tackled some biggies, the most noteworthy being a trip to the dentist. This was Levi’s first time there as a patient and the anxiety has been running strong for three weeks. He has been waking up in a cold sweat yelling “no dentist” and crying inconsolably. He mentioned the dentist and cried over it no less than 6 times each day. We have watched every Sesame Street, Daniel Tiger, Dora, etc show about visits to the dentist and spent time watching YouTube videos of other children at their first appointments but nothing could squash the anxiety. When the day finally came and he realized where we were going the meltdown began.

In his world he has had to do a lot of hard things. He is one smart boy and understands that any place with a waiting room and people in scrubs will likely result in his discomfort. It breaks my heart that he has had to experience so much physical pain in his life. I bargained with him in the car and told him if he could go the entire appointment without crying I would go through a drive through and get him anything he wanted. He perked up at this prospect and thought for a few seconds until making his decision: “a kids ice water”. There is something about cups that are kid sized that bring him so much joy. I’d say I got the better end of the deal on that one!

The staff there did such an excellent job easing into the appointment and we were able to make some baby steps towards an actual cleaning. Malachi was next on the table and wanted to impress his brother, allowing them to do a 15 minute cleaning! This is huge for him and his gag reflex.

We went from that appointment over to the vet’s office to get the pups checked out. The lady walked in and looked from the wheelchair to Levi then to the puppies and said “You’re CRAZY!”

And she isn’t lying. I recognize the chaos and most of the time I can’t help but laugh. Side note- they were mesmerized at how well the dogs were behaving. Getting these pups has truly been a God orchestrated gift.

Whenever we ask the dogs to sit and stay Levi does it too. We don’t tell him to but we also don’t discourage it…

Little Levi is such a blessing, but oh how quickly he can deplete my energy. His mind works at an insanely fast rate and keeping up with him is continuing to challenge me in so many ways.

I took a video of him this week on the playground as I wanted to capture his work of breathing to show the surgeons in Cincinnati next month. You can definitely hear his stridor when he is focusing on a physical task. The day after this video he started signs of a cold or severe allergies and struggled throughout the nights with his ease of breathing and his ability to handle his feeds. When he has any postnasal drip it tends to gag him and make him vomit.

Malachi also started the same congestion, progressively growing worse as the week went by. We went into medical mode, checking oxygen saturations and keeping both boys medicated and hydrated. Malachi cannot handle any postnasal drip at all and it sets off his seizures. Friday morning he had at least 20 seizures before lunchtime and Saturday he had dozens more. These days are so hard on his body and his emotions. I can feel my heart breaking each time he starts another one, and I have to mentally detach myself as mom and go into nurse mode to try to fix it. But even then, seizures never get any easier to witness.

We try to lift his spirits by making up games like “sock ball”. He is extremely competitive, just like his mom and dad, and loves trying to beat Levi at things. We also watched a lot of movies. I know I have mentioned this before, but because of his vision loss we narrate a new movie to him one time through. While we were watching The Fox and the Hound this week he was very much engaged in the narration so I would narrate a scene, then rewind it so he could hear it again. I filmed a chunk because it shows you so much of Malachi’s sweet 8 year old personality.

Confessions of a Special Needs Mom: Watching continual, daily suffering has challenged my faith more than experiencing it myself.

I am a fixer. I like to look at a problem and find the ways I can change it for the better.

But I haven’t been able to fix my children. I haven’t been able to come up with a solution for me to take the burden of suffering from their shoulders and onto mine. And for some reason, as foolish as it may sound, I feel a bit like a failure as a mom because of my inability to “fix” things for them.

I read something this week that spoke to my heart and I felt the need to share it with you all.

“I would have pulled Joseph out. Out of that pit. Out of that prison. Out of that pain. And I would have cheated nations out of the one God would use to deliver them from famine.

I would have pulled David out. Out of Saul’s spear-throwing presence. Out of the caves he hid in. Out of the pain of rejection. And I would have cheated Israel out of a God-hearted king.

I would have pulled Esther out. Out of being snatched from her only family. Out of being placed in a position she never asked for. Out of the path of a vicious, power-hungry foe. And I would have cheated a people out of the woman God would use to save their very lives.

And I would have pulled Jesus off. Off of the cross. Off of the road that led to suffering and pain. Off of the path that would mean nakedness and beatings, nails and thorns. And I would have cheated the entire world out of a Savior. Out of salvation. Out of an eternity filled with no more suffering and no more pain.

And oh friend. I want to pull you out. I want to change your path. I want to stop your pain. But right now I know I would be wrong…. I would be cheating you and cheating the world out of so much good. Because God knows the good this pain will produce. He knows the beauty that this will grow. He’s watching over you and keeping you even in the midst of this. And He’s promising that you can trust Him. Even when it feels like more than you can bear.”

ATTRIBUTED TO KIMBERLY HENDERSON OF PROV. 31 MINISTRIES ON VARIOUS WEBSITES.

Our minds have equated suffering with punishment and consequence. It becomes something that we believe we bring upon ourselves. So when we see it happening to precious, innocent children it just seems to go against the vision of the loving God we create in our minds.

But I don’t believe that is how God intended suffering to be. In the Bible suffering is a catalyst for growth, not death.

The moments where we see suffering God sees the next step in His greater plan.

The Bible tells us in Romans 8:18 “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”

I have to believe that the pain my boys have experienced is producing so much good in the kingdom of God.

If we spend less time focusing on the suffering and more time focusing on the crops that we will grow from it, I believe that even watching suffering has the potential to transform our faith and trust in God.

It doesn’t mean we have to like the suffering. But it is an encouragement to embrace the hard things, knowing that they are preparing us (and the ones we love) for future glory.

My eyes keep shutting for several seconds each time I blink and I am afraid I am accidentally going to type something crazy. I am going to take that as my sign to head towards bed!

Thank you for checking in on our family. It is through this very blog that I can sense a purpose in their pain. Thank you for taking the time to walk a mile with my family each week.

Love,

Leah