Summer is almost here! When you are married to a teacher you get pretty excited about that last week of school, knowing you are about to get 24/7 help with the kids at home and at appointments. And maybe keeping an unnamed child out of the pantry and away from the powdered sugar bag. It was pretty easy to narrow down our list of suspects by a) following the trail and b) eliminating anyone from our list that can’t walk.

Summer also means medical traveling season begins for our crew. We try to time all of our out of town medical visits for June, July, and December so Jake is able to come with me. We will travel to Nashville for appointments at the beginning of June. We also heard back from Cincinnati and we will have four days of appointments followed by a procedure at the end of July. They are eager to take a look at Levi’s vocal cords and assess the level of movement.

With the summer comes the hot temperatures! Malachi is very sensitive to heat and the part of his brain that manages temperature regulation is very damaged. Saturday was in the high 80s, which isn’t that bad but his body had adjusted to the cooler temperatures we have been having and just panicked. We got him home from his indoor soccer game and he was running a fever of 102. There is a noticeable difference between Malachi’s sick fevers and Malachi’s brain fevers and we knew this one wasn’t sickness related. We were able to bring it down over the course of 4 hours, but when we do this he usually continues to drop and becomes hypothermic so we have to watch him closely.

 

Great news- the bear has not been back in over 5 nights! Usually that means he has moved on, so we have been thrilled. He didn’t even stop by for salmon night, which is his favorite night to swing by unannounced. We even got brave enough to go on a few walks this week!

Levi has been getting more ambitious with eating and drinking, and it has been so fun to watch him discover new tastes. It is a very slow process as we are combating some serious oral sensitivity but he is making such big gains. I take a picture of each new food he eats to remind me when the feeding therapist asks each week.

For the first time ever he successfully got some water out of his sippy cup!

He has also started telling me “no” with his head shake, which cracks us up. Here is a video:

We had so many appointments this week that Malachi was only able to go to school for a bit on Friday. He started to get emotional a few times while he was there but did much better than last week.

He did get to go to a career fair at church on Wednesday evening and see a fire truck and a police car!

Levi is still absolutely obsessed with big brother Malachi.The feelings are mutual.

Any chance he gets he will scramble up onto Malachi’s lap and sit with him. This week he has been giving him lots of big, wet kisses. I filmed some for you to see:

Levi had his post-op visit with his eye doctor this week. I have decided that these are my least favorite appointments in our cycle right now. We drive nearly an hour there, they dilate his eyes, and sit in a crammed waiting area while the eyes dilate. They tell you it takes about 30 minutes. But inevitably we get stuck in that waiting room for over an hour. Then they take us to an exam room for our appointment which is literally two minutes long. Two minutes. This week’s appointment was just shy of 2 hours, and only two minutes of that was actual doctor time.

I was doing my best to keep Levi entertained and Malachi content and fed, but my stress level was at its max. I was on the verge of tears by the time we actually went back to the exam room and on the way out of the building I lost it and began sobbing.

I couldn’t even pinpoint why I was so emotional…I think to summarize it best I just felt so “unseen”. We were just another name on a sheet of paper. No one cared that we had sat in a crammed waiting area for over an hour. No one cared that I had two complex kids to deal with during that time. No one cared that I had to use the restroom but had no way to get both of the kids and myself out of the office area and across the hall into the tiny public restroom. They all saw what I was dealing with, but no one cared.

They don’t have to care but I just wish we were in a world where their instincts were to care about their patients. Not just cycle them through their assembly line. Hopefully you know me well enough now to know that I do not expect special treatment in our world….I want this same caring treatment for ALL children, not just my own. If you are in the healthcare industry and reading this, please remember to treat your patients as more than just a number. Make sure your environment is not void of compassion. Look for the signs of a weary mother and offer a word or act of kindness. Look for a child struggling to stay calm in a place that prods and pokes and offer a smile. Don’t just look but see. 

Church has been challenging lately. Levi is too wild to stay in service and too clingy to go to the church nursery. I have been so discouraged as we get all geared up and I am stuck sitting on a bench in the lobby with a bored Levi. I can’t stand when people complain about things but don’t put any effort into actually fixing a broken process, so I spent the weekend setting up an area for for us to comfortably sit at during the service. Some men in the church even rigged up a speaker so we could hear the sermon in the lobby where we sit! As you can see in this picture, I can’t even walk three steps away from Levi before he loses his mind haha.

We were also joined by some friends in the same boat.

Random thoughts time…

On Friday afternoon I walked up to the side door at Malachi’s school to pick him up. Over the last few weeks a momma bird has been diligently preparing a nest and recently laid eggs. Each time I approach that door to the school she flies away, just missing my head so I have been cautious about not surprising her.

When I walked up to the door on Friday she didn’t budge. I looked up at her, giving her plenty of time to react and fly away, but she just looked right back at me. Her eyes were wide, her beak was open, and I could see stress in her face. This sounds so ridiculous, but I saw so much of myself in that momma bird in that moment.

I rang the doorbell to let them know I was there and then took several steps back to give her a break from her anxiety, but her faced never changed. As I stepped back I noticed that there was another bird on the nest as well (I am assuming daddy bird) and he was facing the opposite direction, both as still as could be.

As I looked again into the eyes of the momma bird I could tell that she wasn’t even recognizing my presence as a threat. There was something else going on. I took another step back and spotted it- I could see the distinct pattern of a snake a few inches from the bird’s nest.

My heart started to break for those birds, and my connection with them deepened to a whole new level.

They did everything right. They went and found the perfect pieces to build a beautiful nest. They prepared a spot high in the air to keep their little ones safe. They diligently flew back and forth to that nest each day, making sure that the environment they were preparing would be cozy for their babies.

They welcomed their beautiful eggs into the nest last week, doing everything parents should do to protect, nurture, and love their babies until they were born. And even though they did everything right, danger and possible death still lurked nearby.

Their eyes should have shone with joy and happiness. But instead they dared to not move a muscle. eyes glossed over in fear. They were willing to sacrifice their own bodies by staying on that nest to protect their babies from a known death. They were willing to make this sacrifice for children whom they had not even met yet. Because that is how deep love runs.

Jake and I have been sitting on the nest for 6 years. Our eggs have hatched, but unlike other kids, ours must stay in the nest. We have had moments where we don’t move a muscle, for fear if we let down our guard for even a second bad things will happen. There have been moments where the danger isn’t present and we relax those tense muscles long enough to breathe, but we dare not fly from that nest.

As you can imagine (with my soft heart), I can’t get those birds out of my mind. I see that panicked momma bird’s face when I close my eyes. I told the SRO officer about the snake but it had tucked itself into an unreachable spot by the time he got there to look and he said there was nothing that could be done. All weekend long I have been rooting for the birds, but googling has told me that I will likely find an empty nest tomorrow when we go to school.

The things I read on Google reassured me that this is all part of the circle of life. That snakes must eat too. And for some reason that sparked me into another rabbit trail that I can’t get out of my head…

My children were not meant to live. In another century, or even in another country today, both of my children wouldn’t have survived the day of their birth. I can’t imagine having to hold a newborn like Levi, struggling to breathe until he passed away. I can’t imagine not having access to a c-section and giving birth to a stillborn 1 pound 12 ounce Malachi.

I can’t imagine a world that doesn’t include my two sweet, uniquely “broken” children.

And I am so thankful that God has seen fit to let them leave their footprints on this earth.

It isn’t the life we imagined. I have that momma bird look on my face often, eyes frozen in resolute steadfastness to protect my babies. But I am thankful that God continues to remove the dangers that swirl around my children and threaten to take their lives.

Tonight I am thankful that even when others don’t see our struggle, God sees.

God always sees.

Isaiah 43:2a says “When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.”

As I read this verse I couldn’t help but wonder why the writer said something so redundant. But the more I processed the words the more I recognized his purpose.

In life we will have lake moments and river moments. They each come with their own unique set of emotions.

In a lake moment, you are treading water and exhausted. The water rests on your neck, and the weight of that sensation is mentally difficult to fight. Your body begins to do things you didn’t know it would as panic sets in. The only thing you can seem to focus on is the water sitting just below your mouth.

In a river moment you have a destination in mind- the other side of the river. But between you and that destination is a path of slippery, uneven rocks that you can’t see. Each step you take you are trusting that your foot will land on something solid, which it doesn’t always find. Your body is tense with stress and mentally you are bankrupt as all of your energy is focused on simply taking that next unsteady step.

Both of these moments deplete you, but each in their own different way. I am sure at some moment if your life you can relate to a river moment, a lake moment, or like me you can relate to both on multiple occasions.

But back to that verse in Isaiah…in those river and lake moments God promises that He will be with us. He reassures us that the waters will never sweep over us. It is in those threatening moments in our lives that we realize how to call out to God and how to reach out in desperation, knowing that He will grab our hand and hang on until we find our footing or find the shoreline. He doesn’t always rescue us from the waters and carry us to dry land, but His hand is always extended and ready to help guide us step by step.

When was the last time you reached out for that hand, or even noticed it braced above you, ready and willing to help?

Thank you for praying for our buddy Jonathan last week. He is home right now but still healing slowly and could use continued prayers.

Please remember our boys as well, that God continues to work in a mighty healing way.

Much love,

Leah