Things I am increasingly thankful for in my life:
- our diaper chute; I thought it was a pretty clever idea but who knew it would be such a game changer. My world is full of poo.
- Amazon prime; I literally ordered mayonnaise on Amazon this week. Weird? Absolutely. But so incredibly helpful (Amazon, not the mayo).
- Little House On The Prairie. It is boring enough that Malachi will go to sleep during our 3am parties, yet fascinating enough to keep me awake until that happens.
- a dry sink; see bullet point #1
Levi is growing and changing so much these days. He is now 9 months old and 16 pounds. We have been working hard on sitting independently and while we are nowhere near being able to do it yet, he still looks so proper in his attempts. Sometimes I catch myself worrying about the milestones that we have yet to reach, and then I remind myself that if I spent the first 4.5 months strapped in a hospital bed my muscles might be a little weaker than normal too. I still believe fully that God will heal Levi’s brain and vocal cords. And along with that healing, we will see these milestones!
Gah I love him. I love them both so much. Malachi and Levi are starting to interact more with each other and seeing them pester one another fills us with joy. Levi grabs Malachi’s feet and chews on them while Malachi takes his fist and bonks Levi on the head.
Tuesday was our wildest appointment day as we headed to Chattanooga for an early morning appointment. The night before big days like these I do the math- take the appointment time minus 10 minutes to check in, minus 15 minutes to find parking and wait on elevators, minus 10 minutes to unload all of my gear and children, minus rush hour traffic allotment, minus the one hour drive to get there, minus 15 minutes to load up the boys into the car, then from there I decide if it is reasonable to actually plan on a shower before we hit the road. 9 out of 10 times that is a big fat nope. So I guess I need to add “ball-caps” to the thankful list above.
We made it to the hospital, turning heads as we went. I am still trying to come up with a good response to the one liners that are zinged our way. Tuesday’s was from a man in his 60s “Think you can handle one more?” To which I stopped and replied “Sure, hop on!” Another one of my Leah awkward moments I am so talented at creating. He laughed awkwardly and kept walking.
We made it up to the surgeons office to sign in and I heard a thump. Confused, I looked at the ground to find that a very important piece of Malachi’s wheelchair had broken off leaving a jagged spike next to his rib cage. Wonderful.
We met with Malachi’s surgeon and talked about the possibility of placing a g-tube. There are three ways they can do these- endoscopically, laparoscopically, or open incision. Malachi has had several abdomen surgeries making this whole process much more complicated- hernia repairs with bowel loops, stomach perforations, penrose drains, shunt tubing placement, and more. Each time they went in more scar tissue formed and the probability of an easy g-tube placement lessened.
At this point endoscopically is out of the question, and it will be a stretch to place it laparoscopically (sending in a camera through a small incision first followed by tools) but we would like to try before they go to the open incision. There are risks that they could puncture the bowels trying to get the tools and camera over to the g-tube site but all we can do is cover him in prayer and hold our breath….something we have practice in.
This same surgeon has done all of Malachi’s other abdominal surgeries and we trust him immensely to be conservative when he needs to be. It helps knowing and trusting the man in charge of the decision making. We are waiting on a call back with a surgery date but our goal is to do it before his November foot/hip surgery.
As we left the surgeon’s office I made a quick phone call to the wheelchair repair shop to see if they could take a look at Malachi’s chair and off we went. Thankfully they were able to fix it within the hour!
I had promised Malachi early that morning that he could go to school after we finished our appointments, not anticipating his wheelchair breaking and other random surprises. When we got back into the car I asked him “Malachi do you want to stay home with mommy today?” to which he replied NO. I then asked him “Malachi, do you want to go to school?” and he did his YES sign. Alright buddy- school it is.
I always want him to know that he is heard, even when he cannot speak.
But now we were past lunchtime and he still hadn’t had a solid meal. I found a Cracker Barrel on the route home and in we went to refuel Malachi and mom. We like Cracker Barrel because we are a rowdy bunch and it is nice and loud. To feed Malachi takes about 45 minutes and he is just too large now to do it in the car. I quietly asked the hostess to stick us in a corner somewhere and she said she had one corner table left and it was JUST the table for us. Then she took two steps into the dining room and led us to the table right behind the hostess station. Not ideal but we will make it work.
We settled in but being right next to the entrance/exit of the dining room we got loooooots of comments, pity looks, and unwanted attention. One employee as we left loudly said “Oh my God, is she by herself with both of them!” These moments are so hard for me. I want to be invisible. I crave normal. But our life is “fish tank” with lots of outsiders looking in when we go into public settings.
But then I remember that maybe me having to care so intensely for my children is the “Jesus” that someone needs to see that day. Maybe someone needs to be reminded of the purity of love that exists in a Malachi smile. Or maybe me pushing my comfort zone will encourage others to do the same. To hide my boys and our life from the world would be a huge mistake. Even without speaking a word, their lives and unbreakable spirits are incredible.
In the end Malachi got his food and off to school he went- for an hour and a half, but still momma made good on her promise!
Mixed into our 7 appointments this week we also had youth pastor duties and soccer games/practices. In case you weren’t aware, Tennessee is HOT in August! Mid 90s hot. So for soccer games we have rigged up a nice tent for the boys and bring a generator and a high powered fan. They both really enjoy being outside in their bungalow and watching the game (and Mom and Dad in coaching action) with grandma.
I am slowly trying to reclaim some of my out of control life. This is the absolute heaviest I have ever been. I am confident that the stress, lack of sleep, and inability to eat normal mealtimes has something to do with it, but nevertheless it is my job to take care of my body and make good choices. I have been trying to make time to run on the treadmill in our basement and have set up a nice little play station for the boys down there. We also have a local gym that is tiny but perfect for a 30 minute workout while Malachi is in school. Baby steps.
Malachi had another exciting Saturday in his new soccer league! He was all smiles when we told him it was soccer day. And the smile on his face as he wheels around the court is heartwarming.
Mondays are turning out to be pretty pleasant days for us. Malachi has started going to school for about 3 hours a day and I am able to take Levi to his therapies alone. It feels so odd to just have to one child to worry about…almost like I am forgetting something…such a weird feeling.
This Monday after Levi’s physical therapy I decided to run into the grocery for a handful of things we desperately needed. As I pushed Levi in his stroller we passed a nice elderly man who pointed at Levi and said “Wow, you really have your hands full!” I just laughed and smiled and said “I sure do!”. It seems self-seeking to one up his thought with a “This is nothing! I also have a special needs 5 year old in a wheelchair!”
Perspective is everything. And this world isn’t a competition of who has the hardest life. But sometimes our human minds play that silly game.
Every one of you has your own struggles, your own fears, your own unique and winding paths. Like the parable of the talents found in Matthew 25, each of us is entrusted by God with things “each according to his ability.”
But what happens when God sees more in your ability than you see within yourself?
1 Corinthians 10:13b says ” And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”
I keep clinging to the word “endure” in that verse. What exactly does endure mean? I did what every American does and went to Google and here is what it gave me:
Endure= suffer something painful and difficult patiently
Ugh that doesn’t sound pleasant.
There are so many times in my life that I have been flabbergasted by God as I think to myself “God thinks I can handle this, but I truly, sincerely don’t think that I can.” But I can attest to the fact that He has always given me strength and power to ENDURE it. To suffer something painful patiently while I trust in His timing and plan.
He hasn’t given me a painless life. My heart is bruised beyond recognition. I don’t recognize myself in the mirror. I am a product of enduring. It breaks you down and shows your ugliness. It shatters your pride. It takes you to your weary and skinned knees.
But to live a life of enduring has brought me closer to God than any comfort this world has to offer.
But that “way out” that is referenced in 1 Corinthians IS GOD! He gives His strength to the weary, He increases the power of the weak. He renews our strength.
With God to run to we can not only endure, but we can soar on wings like eagles. We can run and not grow weary.
So my challenge to you this week is to change your perspective. It is easy to play the game the world likes to play…”listen to how rough I have it.” I could have given that old man in the grocery store an earful. But instead let’s be proud of our bruises, of our scars, of our journey. Because it is those very things that show that we have ENDURED. And we have reached the other side of something so dark and painful with the help of Christ.