Y’all, we got a good picture! In the six minutes of peace before the headbutting incident from last week she was able to capture this beauty! Boom.
It was early in the morning one day this week when the question hit me…
“What kind of mom would I have been?”
I am constantly battling the temptation to think about what kind of child Malachi would have been had things gone differently. I continually catch myself dwelling on those thoughts.
But sometimes I mourn over the things I am missing as a mother. And as that question swirled around in my mind throughout the week it started to shape the lens I looked through in my daily tasks.
I walked through the store to find socks for Levi I caught myself reaching for the cute socks- only to redirect my hand towards the ones that I knew would help hold his pulse oximeter sensor on better when he sleeps. The boring socks. I would have been a mom that picked the fun and crazy socks. Sometimes I wish I could reach for the crazy socks.
I walked to find clothes for the boys and quickly bypassed the ones in Malachi’s size with a popped collar. Shirts like that can suffocate him if I am not watching him closely. And I sadly breezed on by the cute clothes for Levi knowing that they wouldn’t protect his g-tube site from his grabby hands and they would not accommodate his tubing without me hacking the outfit up with scissors.
I would have been the mom that was known for hugs and kindness- known for drying tears instead of creating them. Known for kissing boo-boos and not known for allowing surgeons to create those painful scars. I would have co-slept, not fearing that my 5 year old might accidentally smother himself in his pillow during a seizure. Or that my baby might roll enough that his oxygen tubing might wrap around his neck and suffocate.
I would have been the mom that bought bath toys, knowing that bath time could be fun! Never did I dream I would be wheeling one child into a shower and fighting his body’s instincts to try to get all of him clean. Or prepping the baby tub for the other child, spending 15 minutes preparing all the extensions, oxygen tubings, dressings, and tapes then wrestling him to keep his hands away from his now exposed tummy tube. Buying the bath toys right now gives me something else to mourn over as they would sit on the shelf untouched.
I would have been a flexible mom that wasn’t stuck on routines. Instead these routines (med schedules, doctors visits, therapies, keep my children alive and improving. I have to walk the same routine path through my house with my 11 month old to keep his 50 feet of oxygen tubing from getting wrapped around furniture as we move from room to room. Even my steps have to be pre-determined and thought out.
I would have been a playground mom. A playgroup mom. Not a mom who sees germs everywhere she looks. Germs were never on my radar. They were simply germs…they made you stronger as they built your immune system.
I would have been a cookie baking, come lick the spoon kind of mom. Never did I imagine that my children wouldn’t be allowed to eat food by mouth safely.
Would I have been a mom who was anti-vaccination? I no longer feel I have the choice to be “that mom”. The decision to be all natural with my children has been taken from me as those medications and interventions that others avoid are the exact ones that keep my children alive. Seizure medications are non-negotiable. The one year we didn’t give Malachi the flu shot he almost died, ended up in the ICU for two weeks. I sincerely feel that vaccinating my children is helping keep them alive.
I would have been a mom that took “mom days”. I would have gone out with friends to get manicures and pedicures. Taken time for me. Instead I am the mom that is mortified by my fingernails as any rare time my hands are empty I am anxiously picking at them. I am ashamed by my anxiety but genuinely don’t know how to relax.
I would have been the mom planning family vacations, camping trips, ski trips, and getaways. I always wanted my children to have experiences over “stuff”. The challenge of finding handicap accessible places and experiences paired with the challenge of packing and transporting medical equipment squashes the dream for being that mom. Instead I find myself planning overnight hospital stays and road-tripping to different hospitals in different states for quality medical care.
There is SO MUCH beauty in my life. But there are also these moments of severe sadness.
As I processed that question this week I listened closely to the Holy Spirit, trying to decide if I was feeding a bitterness root and allowing it to grow. We are called to guard our heart and mind, and I wanted to be sure that I wasn’t opening that battlefield to another attack.
But as the days went by and the thoughts kept coming the conviction stayed away. I ALWAYS feel conviction over my thoughts about what Malachi “should” be like. But that feeling never came.
You see, God doesn’t have an expectation for us to be happy all of the time. He doesn’t expect us to never experience sadness or mourning. In fact, we are told that in this world we will have trouble. There is a time to weep and a time to laugh. A time to mourn and a time to dance. (Ecclesiastes 3:4)
But there is a thin line between controlling our thoughts and allowing our thoughts to control us. And change us. For now I am in a safe range with my mourning…because I continue to firmly believe that God can and will turn my mourning into dancing. I continue to trust, continue to hope, and continue to believe that God’s plan for my boys is more beautiful that the one I pictured.
But some days are very hard for this weary momma.
Changing gears to happier things…look at this precious illustration made of our family! It made me tear up this week as it captured Malachi in such a special way. We found a woman on Facebook that makes them for just $20 (plus $5 for each kid) and figured it was worth a shot since photos don’t always capture the best sides of my children. If you are interested in her making one for your family you can email her at firstname.lastname@example.org. They would make an awesome Christmas gift too!
Jake was on fall break this week and having the extra set of hands around has spoiled me! He stayed home with the boys while I went to work in the mornings, and we were able to fit in some fun in the afternoons. Here are some photos from our aquarium trip. The aquarium has extremely low light so Malachi can usually see the fish and the jellyfish pretty well; he always smiles so big when he catches a glimpse of their movement. He also LOVES touching the stingrays.
I took the boys to their GI doctor this week for a check up. Little Levi is getting chunky weighing in at nearly 19 pounds! Malachi is still hanging at the 25 pound mark and the doctor is hoping to put some more weight on him after his g-tube is placed.
Malachi also played in his final fall soccer game and even got a medal at his awards ceremony. He is incredibly proud of that medal and wanted to take it to church this morning for all of his friends to see. If you are in our circles and see him this week be sure to ask him about it.
After the game on Saturday they had a special surprise and brought in some superheros to meet the kids! Malachi was so excited that Batman came to visit!
I have been trying extra hard lately to narrate life to him. The harsh lights of the gym completely stunt the little vision he does have. This was his face when I told him that Batman came to visit him:
The boys tagged along to soccer games with the high school team, bowling and arcades with the youth group, and all kinds of other adventures. The soccer team that we coach just won the district championship so this week they will be battling for the regional championship title. The weather officially changed this week so I am hoping I can still make it out there to the games, but obviously the boys comfort and health trumps my coaching desires. We are so proud of our team though!
It really was a wonderful week for the four of us. This week we will be heading back to the eye doctor for Levi to discuss surgery.
We are inching closer and closer to surgery days so we need to continue to cover the boys in prayer! We need them to be completely strong and healthy heading into this next branch of our crazy life. Please join us in prayer over their bodies.
Faith over fear.