For as long as I can remember, I have been rolling through life with some sort of theme-song playing in the background. I love music of all kinds. My theme-songs have changed over the years varying from the almighty Gloria Gaynor anthem, “I Will Survive” and Neil Finn’s “She Will Have Her Way” from my early college years to post college years, including “Dreams” by the Cranberries and “Just a Ride” by Jem. Then I had my Carrie Underwood phase where just about every Carrie Underwood song was my theme song, including “Wasted”, “Jesus, Take the Wheel”, and “Lessons Learned”.
My current “jam”, as my son would say, is “Brave” by one of my favorite musical artists, Sara Bareilles. This post is all about being brave. Over the course of writing this blog, it has felt a bit like peeling back an onion. I have peeled back many layers over the past year or so and I’m about to peel back yet another, rather intense layer.
YouTube video, “Brave”
THE BRAVE FACE
The thing about being a mom of a special needs child is this constant, nagging urge to put on the brave face… for everyone. Our children, our spouses, our families, our friends, and the list goes on and on. This face is not untrue. It’s not false. Because really, when it comes right down to it, every mom of a special needs child is uniquely brave, whether they want to admit it or recognize it or not. It’s simply there and it’s inescapable.
Oftentimes after updating my blog, I will get messages from family or friends that say, “You’re such a good mom” or “You’re so strong” or “I don’t know how you do it.” I relish in these comments, because I admit, I have a nasty case of self-doubt and there are times when I desperately need that pat on the back or words of encouragement. So thank you, to all those out there who do take the time to read this little blog and reach out. It means more than you’ll ever know.
I write this blog for several reasons. To inform. To educate. To inspire. To help. To express. To encourage. To feel. To be real. To be.
And in between all of this, I want to be authentic. Through all of the pats on the back previously mentioned, I began to think over the past few months if I have really gotten down to the deep, down truth of it all in this blog. To lay it all out there and just be honest. Most of what I’m about to share is at times embarrassing and self-deprecating. It’s not easy admitting our weaknesses because it’s human nature that encourages us to always put our best foot forward and our brave faces on.
I doubt a lot. I doubt my abilities as a mom. I doubt the decisions and choices I have made for my son. I doubt the abilities of the health professionals surrounding my son’s care. And until recently, I doubted the effects of feeding therapy.
MAMA GUILT
I have two children. Brady is my 6-year-old with EoE and Sydney Sydney Sydney Hospital Medical Center
It was such a frustrating and all-consuming time period for our family. I had the mama guilt everyday that my 6 month-old little girl was getting lost in the midst of all the crazy. It wasn’t fair for her to have to take a backseat, but Brady was on the verge of a major medical crisis with various health problems, loss of weight and developmental delays on top of it all. And to make matters worse, I was suffering from post-partum depression after having Sydney Sydney
DR. FIX IT
It took me another month to finally admit, yes, I needed help. I was having such a hard time dealing with it all that I was just going through the motions, but just barely. I timidly went to my new primary care physician (PCP) and when she came in to meet me for the first time, I remember just bursting into tears in front of this total, complete stranger. I was mortified. However, that one act alone made me realize that I had waited too long to admit I needed help. Without hesitation, my new PCP put me on anti-depressants. I was ashamed for the longest time that I needed them. It felt like “anti-depressants” was a dirty word. I didn’t want to talk about it with anyone. I only opened up about it to my husband and a few close friends that I was now taking meds for what my PCP called “situational depression”. A few friends judged and I guess that’s why I kept a lot of it to myself.
I begrudgingly took the pills each day and after a month, I definitely started to notice a difference. It was certainly a lesson learned that it’s okay to admit when I need help and that I don’t have to be everything to everyone all the time. I felt so lost back then with such a feeling of despair and hopelessness. Watching Brady suffer day after day with no answers and trying to take care of a six month old baby girl was simply sucking the life out of me. I don’t mean to sound crass, but that was the deep down truth of it all.
I’m so glad I sought treatment when I did because a month after visiting my new doctor, Brady was officially diagnosed with EoE. The next several months were hectic and emotional. I was much better prepared for the next phase of our lives since visiting my own doctor and I’m so very grateful that my husband recognized a need that I didn’t realize I had. I have learned over the past few years that self-care is the absolute key to survival.
THE 80/20 RULE
There is a rule of thumb in business that you should focus 80% of your time and energy on the 20% of work you feel is most important. Seems simple, right? It’s all about how to work smarter, especially in the days of limited resources. I recently came to the realization that I have my own 80/20 rule. I feel that 80% of the time, I’m doing good. I’m hanging in there. I’m accepting of the life that has taken a turn over the past few years. That 80% is the optimism shining through and the hope of good things to come. That 80% also helps me to see how far we’ve come and to truly appreciate the people and things surrounding our family and home. It’s just that shifty and aggravating 20% that overflows into my happy place and threatens to take over on occasion. I can see where that 20% could easily engulf the 80%, chew it up and spit it out. All of that hard work of the 80% simply crumbling into dissipation at the first sight of resistance. My 20% is the underlying hurt and frustration and anger that resides just under the surface on my not so good days… and let me tell you, that part ain’t so pretty.
SCATTERED OPTIMISM
I’m an optimist at heart. Always have been. Many of my posts are full of hope, and a majority of the time I feel that way. But I have my days -- don’t we all? I have a harder time especially when Brady has flares, or he has a bad feeding therapy session, or he’s in pain hovering over the toilet fighting back nausea in the middle of the night, or he’s not growing or developing on schedule, and the list goes on and on. I can so quickly revert back to that feeling of hopelessness. It’s those days I see “the 20%” coming on and I can’t stop it. I can’t fight it. I submerge myself in the deep dark feelings of despair and then the hate begins. Hate for this horrible, uncured disease. Hate for the pain and suffering Brady goes through. Hate for the need for feeding therapy. Hate for all the stress that can pile on. Hate for the feeding tube (even though it’s done wonders for Brady).
And unfortunately, the hate for this disease can get misplaced, finding itself landing on an innocent someone or something. It’s hard to explain. I just know that I catch myself lashing out and grabbing a hold of something, anything at times of desperation. That “something, anything” could be a multitude of things or persons that cross my path and make my sometimes already complicated life even harder.
It’s right about at that point when I begin to loathe myself because of all the hatred that has built up for these seemingly meaningless “things” that I cannot change. And then I snap out of it. I realize things aren’t all that bad, that others out there have it so much worse, and I move on… until the next time. The secret to recovery on these downer days is to recognize it, own it, accept it, take a breath… and then begin to walk on, move forward, keeping that head held high, all while resisting the urge to crumple and fall for the ridiculousness of it all.
MY NEW PLAYBOOK
Through this journey I have learned a lot about myself. Sometimes I let the little things take over and blow up into something that is so much more than it should be. Whether it’s a snub by family that hurt my children (and me), hurtful comments made by others, or friendships tried and tested. There is just no room in my life for this negativity. Perhaps a few more bridges need to be burned. Perhaps new bridges need to be built. I know one thing is for certain, I’m not going to let others’ judgments and decisions affect my life anymore – at least not in a way that it festers. I’m not going to let someone else make me feel bad about myself and my decisions. Those things are out my control. What I do have control over is to move on and simply let it go as quickly as possible.
Perhaps I need to take a page out of the business 80/20 playbook and start dedicating my 80% towards achieving the life I want for myself and family. The 20% that really counts. The 20% that is all about providing a warm, nurturing life for my family, despite all the odds and mishaps. Creating a life rich of positive experiences, giving back, helping others, setting a good example for my children and simply living this life to the fullest.
I know it won’t be easy at times to keep the focus in the face of adversary. But when those times do arise, and they will, I am committing myself to remembering my new playbook. To let go of things I have no control over. To get rid of the negativity and focusing on my dedicated 20%.
I have a feeling that 20% is going to fill my bucket for years to come.
