What a week we have had!
Let me kick off this entry by telling you about Malachi’s big debut as Grand Marshal of the Christmas tree lighting in our small town! Malachi has been so excited about the big day and we started practicing at home with his recordable switch. We would turn the lights off and he would activate his switch that said “Ready, set, light up that tree!” and when he pushed it we would flip the light switch on.
When the big day came he was ready to roll. We had family come into town for the big event and a visit so I gathered all the children in the group and let them do the recording into the switch so they could be involved as well. It was a rainy day but they had a tent all set up and ready to go for the Grand Marshal.
Malachi gets overstimulated very easily, which is completely understandable to me. If I had trouble seeing things I think I would get overwhelmed too! I was watching him closely and could tell he was really trying hard to process all of the familiar voices, the rain, and the new environment but he was clearly loving all the attention.
The tree was beautiful and Malachi was one happy boy. We watched the video over and over again at home and his reaction really warmed my heart so I thought I would share it with you all:
And here is the actual video from the event if you would like to see:
I wish I could see the world through the eyes and ears of Malachi. He has such a gentle and content spirit about him that is breathtakingly beautiful.
A special thank you to all of the people in our community who came out in the rain to make sure he had an audience. You made his day by making him feel so important and special. He even had a special shirt given to him for the event.
Side note- Malachi’s sickness continued to progress throughout the week and has turned into a cold. He is nearly through the worst of it but with him things linger much longer than normal. His seizures were a little more intense this week than normal but we are through the worst of it. His oxygen was settling around 94 which is low for him but not yet hospital worthy. Nighttime was exceptionally rough for him so he and I have been camping out in the living room where he can sleep upright.
I also got his cold and it has knocked me down! Anytime I get a bug, even a mild one, it turns into a sinus infection that takes a few weeks to get over. I am so thankful that Levi and Jake have managed to stay healthy. I am also thankful that Jake had the entire week off. Malachi and I spent some serious time cuddling this week.
With it being a holiday week our appointment schedule was nice and slow- a much needed break. The boys did a few therapies at the beginning of the week (pre-cold) but we had Wednesday through Friday off. This coming week things amp back up with some big specialist appointments at the hospital. December is always a bit rough as we try to cram procedures and surgeries into Jake’s holiday breaks. This was actually the first Thanksgiving break in years we haven’t had a surgery! It was wonderful.
I got some really sweet photos of Levi one day this week as we headed to the grocery store. He was in some cute overalls so I plopped him in the side yard for some photos. They captured his personality so much more than I even imagined.
Totally random side note, but the gap directly below the setting sun is where the bears come in and out of the woods and up to the porch. We haven’t seen one in about two months so we are hoping they are all tucked in and asleep for the season.
Jake and I don’t really do Christmas gifts so Black Friday is a little out of our comfort zone but we did need to run by Lowe’s for a few things. I am still on the fence as to if it was worth the chaos haha.
We did stay in and play a lot of games as a family! Don’t tell Malachi but for one of his Christmas presents we ordered a switch adapted card shuffler so he can participate in our card games.
We also spent a lot of time with our out of town family which is always wonderful. Levi especially loved chasing his big cousins around. And Malachi genuinely loves listening to other kids play with all of his toys, as odd/sad as that sounds.
We knocked out some much needed cleaning and organizing around the house and Levi has developed a hat obsession. He carries one with him at all times around the house. Some are more ridiculous than others…
This week we celebrated Thanksgiving. The holiday has taken on a whole new meaning now that we have two medically complex children. We are thankful for every day that goes by without a medical emergency, a life altering seizure, or an airway emergency. We are thankful for every night not spent in an ICU or hospital recliner. We have experienced horrific things, so when life is “normal” we are overflowing with gratitude to God. When you know the darkness of life, you crave basking in the warm sunlight as a family.
God has blessed us with a season in the sunlight. But we are also very aware that there are others stuck in a season of darkness.
Both Jake and I want to cultivate a life of giving in each of our children. We want them to understand that they can be used by God to bless others, but in order to do so you have to watch for opportunities and act when you see them.
“The real issue in life is not how many blessings we have, but what we do with our blessings. Some people have many blessings and hoard them. Some have few and give everything away.” -Mister Rogers
This month Jake and I are gathering items for our local NICU. The plan right now is to pair the event with a Christmas Eve brunch they are offering NICU moms and have a few tables set up with all of Malachi and Levi’s favorite NICU items. Boppy pillows, musical toys, sound machines, books, soft (and non blood absorbing) blankets…all the tried and true items that I clung to in the NICU for each of their stays. The moms will be able to come and choose a few things for their warriors and I will be including a special note that God is laying on my heart.
When I look back at their time in the NICU there are two big tangible things that I cling to: early GOOD photographs of the boys and their first outfits. I treasure those things even now. We were able to sell several big items from around our house and raise enough money to buy each baby an outfit and also purchase a Santa suit. We are going to offer each of the moms a chance to let Santa pose for a pic with each baby and my professional photographer friend will take the photo and email it to them that same day.
Here is an example from Google images:
We need a willing Santa on Christmas Eve if anyone out there is interested!
We are working right now on collecting items and want to extend the invite to you. We have created an Amazon wish list and if you purchase from it you will have the option to ship it directly to me at the checkout (it has our address hidden but attached to the list). If you would like to contribute to the table of goodies click on the link below; there are items ranging from $4-$40.
If you aren’t a big Amazon fan and want to donate some money towards items you can contact me at: firstname.lastname@example.org
We can’t wait to watch God work in this, as this is a task He has called us to do! Whenever He calls us to act we are always blown away by the results.
Ephesians 3:20 “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory…”
Please pray for the boys this week as we fight to get back to full health. Pray that God continues to cover Levi in a hedge of protection, which He has so clearly done this week. And pray that Malachi is able to continue to keep things from settling into his lungs.
And please say an extra prayer for us on Tuesday as we tackle 6 appointments, starting the day off at 7:00 and ending around 4:00. Game on!