If you’re a mom, you know exactly what I am talking about. As a mom, you take so much responsibility over things, even if you can’t control the circumstance. I’m sure dad’s feel it too, but since I am not a dad, I can only speak to my experiences as being a mom. Sometimes I feel the guilt when I have things to do all day. When night rolls around and Rhett is fast asleep, I feel the guilt of not spending enough time with him for that day. Sometimes it happens when I need to make a phone call or just could seriously use a break. I turn the TV on to let it babysit while I have that moment. When my moment has passed, I feel the guilt of neglecting my son for those 30 minutes. Of course everyone needs “me time,” and as a mom that is often hard to find a minute to just have a moment to yourself. There are so much other responsibilities that take importance over the self such as cleaning house, cooking supper, and in my case add in all of Rhett’s medical needs. Thank goodness Rhett’s needs have lessened as he has gotten older, but as a fall risk he really does require constant supervision.
Anyways, I am getting off on a tangent and not focusing on the true point of this post. As a mom to a medically complex warrior, I often times feel mom guilt that most people do not understand or can relate to. It is guilt over things completely out of my control, yet I feel it anyways. I feel the guilt of all my child has to endure. It is quite frankly not fair, but life isn’t meant to be fair. I do not feel this guilt often, and I haven’t felt this guilt in quite some time, but today I have felt it in full force. These are the hard days. The days that are hard to share because I do not want pity or anyone feeling sorry for my family or my son. Rhett is the most wonderful blessing, and he takes on all of these unfortunate struggles like a champ. He is much stronger than I can ever imagine to be, but I do my very best for him.
Back to the point. Today was a hard day to be blunt. It was one of those days where you go into it praying so hard for one thing, but not getting the news you had prayed for. I mean I prayed with all my heart all night long and into this morning. That can be so hard when what you want so bad just doesn’t happen. Rhett had a procedure this morning called a VCUG. This is a pretty traumatizing procedure because Rhett had to be strapped down as a catheter was placed in order to see on an X-ray if he still has kidney reflux. Rhett has had bilateral grade 3 kidney reflux since he was born, and has been on a daily antibiotic since birth to prevent any UTI’s or kidney infections. Thankfully the antibiotic has worked in prevention because we have never dealt with an infection. This was one of Rhett’s issues that we have been monitoring in hopes that it will correct itself as he grows. Unfortunately, we got the news today that his reflux is still a grade 3. The doctor told us that if it is not getting better by now, then he is unlikely to grow out of it. The Nephrologist (kidney doctor) recommended we go ahead and schedule an appointment with the Urologist to discuss surgery. That is the news that I so didn’t want. I was so hoping that Rhett would be able to outgrow this reflux without surgery. Right when I think we are close to the end of all surgeries, another pops up. Like I said, it is so unfair. Thankfully, Rhett is a warrior. Our plan is to add on an appointment with Urology when we are back in Cincinnati in November. Hopefully this is a procedure that can be paired with his regular scopes so that we can knock two things out with one anesthesia.
Again I come to you asking for prayers. Please pray that Rhett’s antibiotic continues to prevent him from any infection. Pray that we will be able to get an appointment with the Urologist in November, and that we can do the surgery along with scopes in one anesthesia. Pray that we can choose the best surgical attempt for Rhett since there are several different ways to do the surgery. I have heard this is a painful surgery to recover from, so please pray that Rhett’s recovery at the time of surgery is as easy as possible. Also pray for me and Dale. It is always hard to hear and accept the news you do not want.
Today was a hard day, but tomorrow is a new day and will be better. Even though my prayers were not answered today in the way that I was hoping for, I know that I still serve a good and loving God. God knows the big picture, and his plan is always better than mine. God loves Rhett so much more than I do, which is so hard for me to comprehend, and I know that He is carrying that child in his arms through every hardship he has to face. No matter what we face in this life, our faith and trust remains in our Heavenly Father.
As I got in the car to leave the hospital this morning, the song that was playing was “Even If” by Mercy Me. Here is a snippet of the song that was perfect for my ears to hear in that moment.
I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone
You’ve been faithful, You’ve been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You’re able
I know You can
How amazing that God knows exactly what we need. I needed to hear that song. Like I said, God is always good.