This week started with the excitement of the eclipse! Our town was very close to the “path of totality” and it was astounding how many people had traveled in for the big event. Schools closed as the eclipse was scheduled to take place around the time of dismissal and although they did provide each student with a pair of glasses, they did not want to risk any of the kids unknowingly damaging their eyes by looking at the sun.
Jake and I took turns “sleeping in” and stayed in our pajamas past noon. We ventured out to the property for the main event and sat on the back porch; although we didn’t look up at all we did get to see the beautiful skies all around us. These photos were taken around 2:33pm.
While Malachi did get past his head cold, it seems that he is hanging on to some junky breathing. There is still a lot of congestion which leads to an increase in seizures and vomiting. We kept him home from school until Wednesday to make sure that he was as close to his 100% as possible.
Malachi is truly loving school. He gets so excited when we talk about going, and is starting to bond with some of the teachers and students. The first two weeks he would get very sleepy at school, as it almost overwhelmed his little brain. But this past week he seemed to be more tolerant of the 3 hours there.
We also have started the trials of leaving him there without momma! Wednesday he stayed for an hour by himself, Thursday 1.5 hours, and Friday 1 hour and 45 minutes. This week we will try to transition him to the full three hours and see how he does. The adults in the classroom seem to be getting much more comfortable managing him and his quirks, and as their confidence level rises so does mine.
Picture day was Wednesday and it was a big ol’ flop. After the first camera flash went off, he shut down completely and kept his eyes shut tight. I tried everything in my arsenal to get him to smile, and after several minutes of failed attempts the photographer (who was incredibly nice and tolerant) said, “This is the best one I’ve got, so we will just go with this one. If you don’t like it we would be happy to try again during re-takes.” He flipped the camera around to show me a picture of Malachi, head flopped forward with his chin resting on his chest, mouth wide open but not smiling, and eyes shut. I told him I understood and did the walk of shame out of the gym, completely disappointed by our first school picture attempt.
As I got in the car to leave for Malachi’s trial that day I started thinking about what the man said and I caught myself getting emotional. I pushed the thoughts out of my mind, but sure enough they came back that next morning as I laid in bed next to a sleeping Malachi. I looked at my little warrior and just lost it, crying uncontrollably. I couldn’t stop focusing on the man’s words and the horrible picture of Malachi. From this strangers perspective, THAT picture was a winner. That was the best that he expected for my son. THAT horrible, slumped picture was the expectation for my son. And it absolutely broke my heart.
As Malachi’s mom, I want everyone else to see the bright and wonderful child that he is. I want others to recognize how much he understands. I want others to see him as a typical boy…not a mentally retarded child in a wheelchair.
Jake and I make every effort possible to help the world focus on Malachi’s abilities as opposed to his disabilities. We cringe when people draw attention to his differences, as we think every child deserves to be treated with dignity. We will always dress him in appropriate clothing, assuming that if he could talk he would tell us “Mom, get me that neon orange shirt like all the other kids!” We always try our best to treat him as if he completely understands what is going on around him.
We fight for him, and we always will. But picture day I lost that fight. I couldn’t get that photographer to see the 4 year old boy who can take a good picture if you give him the right setup. And it broke my heart. I started thinking about that picture being in the yearbook and the things people would think based on it. My heart ached more than it has in a long time knowing that I am not always going to be able to convince others to see and focus on his potential.
It has been a long while since I allowed myself to break down, so after just a few minutes of raw emotion I tried to gather myself back together. With Malachi’s junky breathing he is up and down most of the night and sleep is rare. These are the weeks when he will only stay asleep if our foreheads and noses are touching, which doesn’t mesh well with sobbing Leah (or pregnant Leah haha).
In the midst of our school days we had several other appointments. Malachi got fitted for new ankle-foot orthotics (AFOs). We broke away from the camo print and went to dinosaurs! We will get them back in a few weeks and I will post a picture. Malachi also had horse therapy and got to ride a HUGE horse named Sully. He had one of his best sessions yet and giggled most of the 30 minutes.
I had an appointment with my regular obstetrician and everything is continuing to check out well. This is such a big week for us as I am officially 24 weeks pregnant. Malachi came at 24 weeks 6 days so we are looking forward to the 25 week mark! We will see the high risk doctors again on Wednesday and get another look at baby Levi.
The house project is still moving right along and we are told to expect to be in in the next two and a half weeks! Here are a few updated pictures for you:
During the eclipse our pastor sent out a group text to a small group of us saying “If this is the day Christ comes back, I will see you all in heaven!” And joked about who his neighbor would be on the streets of gold. As I pictured the scene I couldn’t help but smile from ear to ear as I thought to myself “Don’t come looking for us! We will be running through the streets and climbing trees with Malachi!”
There is so much joy and hope in knowing Christ. What a blessing it is to know that one day Malachi and I will WALK hand in hand down heavenly streets and be able to talk to one another about the greatness of our God. I will hear him sing those words from the songs he loves so much.
Oh, what a glorious day that will be.
Sunsets at the new house just take my breath away! The beauty and the brush strokes remind me of our Creator.
Thank you for praying for our family fervently, and please continue to pray for miracles for Malachi. Pray for Levi’s health and safety. Pray that my body will not do anything to sabotage his well being and that God will continue to protect him. Pray that God gives me supernatural patience to deal with the trials of being special needs mommy while simultaneously learning how to cope with pregnancy hormones.
May God bless you this week!
Jake, Leah, Malachi and Levi Carroll