I had “a moment” a few weeks ago. A real, solid moment that brought me tears of joy, relief and a sense of hope. It was like getting a breath of fresh air when it finally hit me. I was ready to start living; to really start living again. Hello world! So nice to finally see you again!
As I’ve mentioned a time or two before, 2012 was not a great year for my son and for our family. Now that April 2013 is here and spring is upon us, I’ve realized a few things. It dawned on me that our family went into lockdown mode last year, without really meaning to. It just sort of happened.
Our focus slowly went from living our normal lives to full throttle coping and surviving. We stopped doing things. “Things” like traveling, seeing friends, having company over, going for walks, going to the gym, eating at restaurants, going to church. All of those things that enrich our lives just seemed to go right out the window. Granted, having two toddlers at home made all of these activities a little tough some days – but having one toddler with a rare disease and feeding tube made most of these activities incredibly difficult, especially for us, the rookie feeding tube caregiver parents.
 |
| Brady in April 2012, a few weeks before we got the news he would need to have a feeding tube inserted |
 |
| Brady getting used to his new life with the NG feeding tube |
Suddenly, jumping into a car for a day trip somewhere, anywhere didn’t seem so easy. Going to visit family and friends with healthy children no longer seemed like fun. Taking walks or going to the grocery store while toting around a child with a NG tube felt tiresome, especially trying to ignore all the comments and stares. My husband and I, in a word, were exhausted. Just full of exhaustion from head to toe from the emotional and mental toll of raising a child with EoE. We were dealing with the emotional aftermath of watching our son go through his NG tube insertions (May-July 2012), PEG g-tube insertion (July 2012) and lastly, mic-key button insertion (November 2012) all in a matter of six months that was beyond draining. We lost a lot of our energy to the coping mechanisms that overtook our lives during those months and because of that… we stopped really living.
Then, couple that exhaustion with keeping up with our everyday lives, including our jobs was taxing. My husband teaches 7th grade special education and I work full time in hospital administration. We both put in long hours and have high-stress, high-energy jobs. Looking back on it now, I’m not quite sure how we made it through it all, but we did. And we’re much better, stronger parents now because of it.
Three weeks ago my husband and I received an email from one of our church pastors asking us if we would be willing to host the church spring new member class. My initial reaction was one thought; can I take on one more thing right now?? My second reaction was one of honor and flattery. Then… I had my moment. A moment filled with emotion and the realization that I had been living in a deep, dark hole this past year and I was ready to come out of hiding.
This has really translated into a wonderful snowball effect. My husband and I have joined a gym again. Hurrah! It feels good to get back into shape. We have also made a pact with our close friends to get together at least once a month. My husband and I have also committed to trying to hit one happy hour once a month. We are planning a trip out to Pennsylvania
Through all this planning and socializing this past month, I am once again reminded the lessons we have learned raising a child with EoE. By going into lockdown mode last year, we probably did the exact opposite of what we should have done. In times of change, worry and uncertainty, we should have taken the time to reach out to others for support instead of isolating ourselves. We should have made time for us, a time to be social and to just get away. We should have carved out more time to take care of ourselves by taking a “break”.
Now that I’ve had this breakthrough, it feels good to be out there again. I have so enjoyed seeing family and friends on a more regular basis that it has become oddly therapeutic and refreshing. Who knew? It’s been a nice reminder that it’s okay to take a break from it all. No need to feel guilt – the break makes me a better wife, mother, daughter, sister, and friend.
These important lessons remind me of a quote from one of my favorite movies, The Shawshank Redemption.
“I guess it comes down to a simple choice, really. Get busy living or get busy dying.”
It’s been a hell of a ride the past few years, but I’m no longer going to let this disease dictate the way I live or don’t live or the way my family lives or doesn’t live. Don’t get me wrong, I still have a gut reality check clearly in place. I know there are still tough days ahead… days of heartache and pain and frustration. I also know there will be days of joy and triumph and hope and fun!
All I know now is that I’ve got to go… I need to go get busy doing this living thing.
 |
| Me and Brady on his 5th birthday, March 5, 2013 |
 |
 |
| Brady & Sydney at their birthday party |
 |
| Daddy giving Brady his birthday party bolus Getting a breath of fresh air... |
 |
| Brady at an Easter Egg Hunt for special needs kids a few weeks ago |
 |
| Brady trying out his brand new bike that he got for his birthday |
 |
| Brady and Sydney on Easter Sunday |
This is what living life is all about. I love being a mom to these two adorable children! I have loved watching their sibling bond grow stronger with each passing day.
