We had another week of survival mode in the Carroll house, desperately hoping each night would yield more sleep than the previous one! I *think* we are getting closer to finding that routine we so intensely need and I am praying our Cincinnati trip won’t mess with the flow.
Malachi has been struggling with tummy aches that lead to some pretty awful seizures. One night this week his seizures kept him awake until 5am, then Levi woke up for the day at 7:30. I think the biggest battle for me is mentally dealing with the unmet expectation of sleep. Thankfully today was a slower day for us and we took turns getting a nap in!
Malachi’s seizures have caused his little brain to go haywire and his body temperatures have been up and down. His forehead will feel perfectly normal but his back will heat up to over 100 degrees. It is definitely a brain issue rather than a sickness issue but it requires some creativity on keeping the hot spots on his body cooled down.
We have been spending a lot of time in the playroom- in the pictures below you can see Levi pretending to shave Malachi’s face. It made me smile to see him want to take care of brother, and it also made me consider how this will likely be a reality for the boys in the future. I hope that little Levi’s desire to help care for Malachi always stays this strong!
This weekend Jake and some of our amazing friends tackled the therapy pool pavilion again and made so much progress! We are so incredibly blessed to have such a support system in our lives to help make our goals for Malachi a reality.
This weekend we have spent hours out there. Now that the sunshine issue has been taken care of, Malachi is extremely comfortable. Tonight we sat out there with our toes in the water and watched the sunset.
Last night my brother and his family came out for a night of swimming and smores, and watching Malachi swim with his cousins was so special to me. He was so proud to be swimming all by himself with the big kids. He also really liked sitting by the fire.
Inclusion is so important to Jake and I, and being in a home that provides those opportunities for Malachi to be included in everything is a dream come true. We are so blessed beyond what we deserve.
Levi has been in full on mischief maker mode. His energy never seems to end and his curiosity is increasing each day.
I have felt anxiety creep in this week as I mentally start to prepare for our Cincinnati trip on Thursday. I keep flashing back to the lobby of the hospital, and the exact place I was sitting the night we arrived. It was around 3am and I had gone down to the lobby briefly to meet my dad. While we were talking my phone rang and it was the NICU doctor telling me that Levi had just coded and they were bagging him. I jumped on the elevator and raced back into the unit to find Levi’s lifeless body rising up and down with each puff of air the doctor manually put into him.
There are certain scenes my mind will never forget, and unfortunately Cincinnati Children’s Hospital was the backdrop for many of them. Anytime I enter that hospital my heart sinks as the memories flood back. This will be the 27th time I have sat in the OR waiting area, anxiously awaiting the call from his surgeon to tell me they are done and he is stable.
I will start the pre-surgery routine this week…clip my fingernails off so I can’t chew them, wear dark colors in case he ends up with post op bleeding, delay drinking liquids that morning so I don’t go into the bathroom and miss them calling my name over the loudspeaker.
One of the highest anxiety times is the moments after the surgery when I am shuttled into a small room and wait for them to come in and report the outcome. With his airway issues we never know what they are going to have to do before he enters the OR so I am always eager to find out what they ended up cutting, stretching, and fixing so I can know what recovery will look like. And then as soon as they are done talking my anxiety mode switches to getting back to the recovery area to lay my eyes on my son. Almost every time I can find him with my eyes closed just by following the post-op squeak he often has…it is one of a kind.
This week Facebook memories brought up this photo from 5 years ago.
What a precious little lamb! Up until this point Jake and I had done a pretty decent job of holding tightly to our hope for Malachi to typically develop. But at two years old Malachi still wasn’t able to sit independently and medical professionals started to talk about assistive devices and wheelchairs. They were so kind with their words, recognizing that our hearts weren’t ready for a reality check.
We borrowed this wheelchair for a few weeks to try it out and this was his first time in the chair. As I studied this photo this week it reminded me of the emotional journey we have been on as we try to process life with special needs children. It is a complex journey that is filled with so much joy, sorrow, and unique perspectives. I wrote a small post with this photo on my Facebook page and thought I would share it here as well.
Tonight as I mentally prepare for this week’s medical trip I find myself wanting to mourn again over our loss of normal. But as we read in Matthew 5:
Blessed are those who mourn, for they shall be comforted.
I believe with all my heart that God didn’t design us to sit in a state of mourning for very long. We can mourn over our sin, we can mourn over death, we can mourn over disappointment. But it is during those moments of brokenness that we must soften our hearts enough to receive the comfort God is eager to give.
God didn’t design us to dwell in the brokenness. But brokenness can be a catalyst for our hearts to call out to Him.
Clearly I am still struggling immensely with moments of grief and brokenness as a mother. But I am so grateful that time and time again God receives me with open, comforting arms. Mourning in of itself isn’t a bad thing, but finding a comfortable home within it instead of desiring to run to God can be.
I apologize for the splotchy blog entries lately- I am usually trying to get the boys calmed down for bed as I type them so there is no telling what the final outcome will be. Please cover our family in prayer this week; specifically for these things:
-safety for Levi and I as we travel
-health and sleep for Jake and Malachi as they stay in Tennessee
-comfort for Levi’s medical PTSD
-minimally invasive surgery needed…and no surprises!
-a report that his vocal cords are moving (our miracle)
-wisdom for doctors and Jake and I to know what to do next
I am praying that next week’s blog will be full of wonderful reports and praises!