Three weeks have passed since my last update and, per the norm, life continues to get away from me.
During that time I had a birthday. It is such a simple thing, we have one every year, but sometimes I feel like I am wandering through a dream and a life that is not my own. As I grow another year older, I wonder how I do the things I do. By no means is this me fishing for a compliment, trust me. Instead, I am trying to understand how I can be an adult when most days what I want most is for my mom to make everything better. After all, isn’t that what moms are supposed to do?
But, it isn’t my mom’s job to make everything better for me. I am the mom now and my priority is and always will be my children. The problem with being a mom seems to be that we neglect the most important aspect – taking care of ourselves. If we don’t take care of ourselves, how can we take care of our babies?
It is probably no surprise that I have a habit of putting my own needs on the back burner when it comes to my children. Rewinding the clock to three weeks ago, I was supposed to be packing for a trip to Philadelphia. I was supposed to be preparing for doctor’s appointments and decisions for the upcoming year and Brian’s health. I was supposed to be focused on Brian.
By the grace of God, the trip didn’t work out. At the time I was frustrated, but in reality, God was doing me a favor.
I’ve always hated the adage, “God only gives you what he knows you can handle.” When people say that to me, my response is, “Well he must have confused me with someone else.” There are days I want to yell, “Uncle!” and give up the fight. God must have sensed that coming, because had I packed for that trip, boarded a plane and flew across the country, I would have been in a far worse predicament.
You see, two days before we were supposed to leave, I ended up in the hospital. If the trip had not been cancelled, Matt never would have known the pain I was in, and would not have been able to convince me to go to the ER in the first place. My priority would have been Brian and his medical needs. God was on my side, because not only did I have to be hospitalized, I also required surgery. If I had hidden my pain and boarded a plane, I don’t know what we would have done.
So why the title of this blog?
Simple…I have the best village in the world.
Matt made a phone call and in no time at all, my aunt and uncle arrived to put the kids to bed (not the easiest task at times) and sit with them. They stayed until Matt could make it home, and then my uncle returned the next day so Matt could go to work (here is where I have a hard time focusing on me…I hate to disrupt plans, so I insisted that Matt work). My mom sat with me during the surgery, took me home, and came back the next day with a care package of food and remedies to help with the pain. Friends brought food over, drove Addi to and from dance practices, and Annie (the best young woman I know) gave up a day to just hang out with me and yell at me when I tried to do anything more than rest.
Knowing I have a village I can turn to is important, because our “normal” is about to change.
The same day I ended up in the hospital, I met with Brian’s allergist and discussed Brian’s feeding tube. We went over the plan, feeding schedule, and what new foods we should consider trying. It was an overwhelming amount of information. A week after that appointment, Brian’s surgery was scheduled.
Brian will be admitted into the hospital on November 28. Why are we waiting another month, you may ask. First off, we want Brian to have every opportunity to be a normal four-year old we can give him. T-ball finishes on November 18 and putting the surgery off till the end of November means I will be released from my post-surgery recovery and will have the strength (hopefully) to survive Brian being in the hospital. His surgery is scheduled for the morning of the 29th, and the doctors are hopeful he will be released November 30.
I have spent the last few weeks pouring over information regarding feeding tubes. My Amazon cart is full of supplies others recommend having to make life easier. I’ve searched Etsy for tube covers and even order Brian a “Tubie Friend” (a stuffed animal made by volunteers that will have the same feeding tube Brian will have). Daily I refer to life with a tube in an effort to prepare Brian the best I can. Each night I remind him that he won’t be able to just come to me if he wakes up in the middle of the night. I’ve convinced Matt that we will need a baby monitor to avoid any tube mishaps during the night. I go through a million emotions a day from overreacting to happiness that maybe, just maybe, Brian may feel full for a change.
I cannot begin to estimate the amount of children around the world who have feeding tubes. Some of these kids are in far worse situations than Brian. Some have had a tube since birth. We have made it to almost five before needing one. I know there are parents everywhere who have gone through or are going through this same situation. We are not unique and our story is not special.
We are preparing for our new normal with a village we know we can depend on for anything. God is (not so subtly) reminding me to take care of myself so I can be my best for my family. This is another stepping stone towards keeping Brian happy and healthy.
I don’t know how I can thank those who have stuck with us on this journey. October 31 marks four years of living with EoE. Our village keeps us going through the kindest and smallest gestures, like purchasing Brian safe foods when we are around, showing up with a treat for a Brian and including us in all the craziness that makes life great. To our Village – thank you for your support, your questions, your advice, your thoughts and your strength.
God only gives us what we can handle? Of course, because He knows what we are learning…we can handle anything with a village on our side.
Oh, and who am I kidding, my mom still can make everything better, even for a “grownup” like me.