Sniff…sniff…sniff, sniff. Whimper, sniff. These are the sounds I heard one evening as I was in the kitchen coming from Katie’s room. I had just tucked her in and she seemed fine. Katie has been clingy lately, but I’ve tried to nurture her need due to all the changes over the past few months. They say that kids are resilient, and I think that’s true to a certain extent, but I think a child can take so much.
I put down my glass of water and walked into her room. I brought her into my arms and asked her what was wrong. She started to cry harder. “Katie? Honey? What is it? You can tell me anything.” “Mommy? Are you going to die?”
As a parent, I felt as if I’d just been soccer punched deep in the gut. I squeezed her tightly and said, “Oh, Katie. No. I’m not going to die. What made you think this?” In between sniffles, Katie responded, “All your shots and what you can and can’t eat anymore.” Trying to hold it together, I continued to hold her close so she couldn’t see my eyes tearing up and I said, “Katie, sweetie, I’m not going to die. All my shots are helping me feel so much better. The pills I take in the morning are working! I am under the best doctors in the business. Everything is going to be fine. You don’t need to worry.” Still shaken by my daughter’s fear, we prayed and thanked God for our trials and thanked Him for our fears because those are things that draw us closer to what He desires for our life.
This prayer seemed to calm her, I rubbed her back, gave her some extra cuddles and then left her room. I left feeling awful. Katie has had 6 surgeries in her lifetime, and with each one, we gave her the necessary information at the right time. I think this diagnosis hit our family so fast that we were all openly talking about it and trying to figure out our way through this valley. It never occurred to me that my 6 1/2 year old was taking every conversation captive, chewing on it and then anxiety entered into her little heart.
Although MS is a disease that a person can go on to live a healthy life with the necessary modifications, it’s daunting because all I have is a hope for a cure…there have been great strides to help MS patients live comfortable lives…but there is no cure. There are days that pill is hard to swallow.
There are things that go on in our home that we are very private about upon hearing the news. We are trying to navigate how each other are feeling, how we are coping, and now how to talk about it without freaking out our children. There are some very private fears that I have personally had and then there’s getting ALL the doctors involved to help relieve those issues. I mean, we just recently had to call my OB/GYN because some of “those” pills had to be changed to even out some of those beloved cycles! Who knew that “those” pills, given the right dosage and the right brand, would work together with the other medicine specifically for MS!?! It’s stuff like this we are STILL figuring out.
Another fear is the flu. My immune system…well, I don’t have one. My doctor, just weeks ago said anyone close to me needed to get the Flu shot and I HAD to get one. I go in to get my Flu shot today, and I’m told because of MS, and the strand that is in this particular flu vaccine, it may undo all my progress. So, the Pharmacist is calling the CDC? and my MS doctor to see IF I can go ahead and have this shot. If not, I am going to be the worst germ-a-phobe EVER!
There of course are the frustrations, too! Like, where to eat if I want to just go eat out! The fad these days is to be “Gluten-Free.” However, for me, it’s not a fad, and it’s not something I can just put on the shelf for a weekend, or a day and then get back on the bandwagon. It’s a MUST, and if I screw up, I pay severely. Brandon and I are still navigating through that valley and there have been days I’ve just wanted to crawl into a hole and weep.
Through the valleys, there has been rejoicing! When Katie says, “I wish God didn’t give you MS” (and YES, those words have come out of her mouth!) I say, “Katie, don’t say that! God chose me to have MS so that He could use me to help others. Whether that be bringing awareness, or giving Him the glory through my trials, He chose me and He chose our family. What we do with MS, and how we handle it, is up to us. I am choosing to embrace it and find out what God wants to teach me and our family.” I don’t know how much she really comprehended of my soap box, but I know she’s thinking about it.
The medicine IS working. Feeling has come back in both arms and my thumbs, index fingers, and middle fingers. Ring and pinkies still a no go. There are days my legs tingle, I limp, I sit, I’m fine. I still tire quickly, but I’m learning to pace myself, and with that, it may appear to others as probably selfishness. I’ve had to let go of that fear. People can do with what they want with perceptions. I know the truth.
I’ve lost 15 lbs. and this is because of the medicine, but mostly from the strict diet my doctors have me on. I’m slowly getting to the weight they want me. I tell people I’m eating like Jesus: no preservatives, no MSG, no gluten, ALL fresh, straight from the deli or the farm itself!
God is good through the valleys of life. He is FAITHFUL, CONSISTENT and GOOD
I got out and attended a wedding with my man! I crashed afterwards, but it was a great date with him and friends:)
I’ll do anything for my students! Red Ribbon Week 2013. Even though I’ve got quite the expression, the 15lbs lost is beginning to show!
Praising the Lord that He worked out Noah’s soccer schedule to where his games have been at 8:00 or 9:00. Right before the heat! God is in the details!
Even though this is not a clear shot, I felt good enough to cheer on my daughter and watch her kill her beam routine! For her level, I witnessed her BEST performance on beam yet!
See, GOD is GOOD! He’s allowing me just enough strength to keep the main thing, the main thing!