Another face of Ataxia-Telangiectasia

The Survey Says

Before I had children I had all kinds of opinions on how they should be raised. More accurately, how I was going to raise mine. Then I began raising them and realized that some of those lofty ambitions and grand opinions were not really feasible in the real world. Each of us must find our own parenting style and a comfortable family rhythm. I came to learn there was no “one size fits all” parenting. Simply put there are just far too many variables. I had never envisioned what things would be like on this side of the table. Where it feels as if everyone has opinions on how you should be doing things. Perhaps this problem is exacerbated for us due to Braden’s medical situation. There are no shortage of opinions on that front.

 I always listen to people’s suggestions regarding parenting. Most of the time, folks offer opinions from a good place. I don’t always take suggestions, but I do tuck them back in case my circumstances change and I may need to use them. Other times, I find that the suggestion was a great one! Though lately I have felt as if those opinions are weighing far too heavy on my heart. I feel some comments are coming from a judgmental place. I find myself doubting my abilities as people are doubting my decisions regarding his care. I had myself a real good cry the other day and realized that the problem wasn’t me. As Braden’s health declines I find folks really trying desperately to hit the breaks. Yet his car continues to race onward to the finish line. Instead of hitting the breaks, I am just tightening my seat belt and doing the absolute best I can to make sure we are as safe as possible to enjoy the ride. The problem is that this leaves those hitting the breaks behind us. This ride is scary. The scenery is not always pleasant. Yet, I truly honest to goodness weigh each road we navigate down with as much consideration as time will permit. I make more phone calls to doctors than I ever thought I would. I seek out other families who are also speeding down the same highway. Yet, there are those who simply cannot understand why we make the decisions we do. It makes me so very sad and sometimes rather lonely.

I often write letters to myself for after my son’s passing. Those letters are in an attempt to help myself heal. So, here is today’s.

Dear Self,

Today you left yourself rather depleted. Your emotional bank is overdrawn. You really must work on that Dear. It is time to make a deposit. You spent an hour on the phone with the neurologist and over two hours comforting an overwhelmed friend. You spent another hour working on Braden’s room preparation. The truth is you are trying to juggle a thousand balls and make sure not a single one hits the floor. If you only knew that that is just a silly thing to even bother attempting. Why don’t you set some things down?

I know you have second guessed many of Braden’s medical care decisions lately. Just remember that you spent hours consulting many many specialists. You researched until your fingers hurt. You reached out to other A-T families for advice. You talked over these decisions with your husband. The survey says that you are on the right track. You are doing everything you know how to make him as healthy as possible for as long as possible. You are doing everything in your power to help make him strong, happy, and as independent as possible. You have allowed naysayers to make you second guess, but here I am that strong and constant part of your Self that is here to remind you that you are strong, capable, and intelligent. Hold your head high and be firm in your convictions. You work hard to make these decisions. Have a little faith in yourself. You’ve got this. No matter what look back and remember you did everything you could. Be gentle with yourself.

Love,

Your Self

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Comments on: "The Survey Says" (2)

  1. Sherry Whaley said:

    You are doing great! You are an awesome Mom! I don’t think i could handle all that you do! They say you do what you have to.. but honestly..really don;t think i could do half of what you do! Love and prayers to you and your family!XOXO

  2. Jo Boyette said:

    I have a friend who just lost her mother unexpectedly to cancer. They had taken the slogan “Love her through it” to heart. I am telling you this to remind you to love yourself through it. Please be kind to Braden’s Mom. You’re doing the best you can with the lousy hand of cards you’ve been dealt.

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