Wednesday, January 28, 2015

Discussions with my daughter... I'm sorry...again.

My sweet, beautiful girl... once again, I am sorry.

I want to blame this on anyone and everyone but you know me better than that. I don't believe in blame, I believe in accepting my faults.  While there could be a hundred reasons, the bottom line is I should have asked questions, I should have been thorough, I should have known exactly what I was walking into... and I didn't.  Like many other things, this too I will learn from.

In so many ways you have grown up too fast.  I know all parents say that but with you, it's different. It's not just that time flies by, it's that you didn't have any other option.  While you were born 3 1/2 years later, you were born the "little big sister".

Disappointment is not new to you.  Despite your own struggles with Fragile X (which, yes, I do recognize and do my best to help you through), your brother's struggles are significant and typically trump everything.  Tonight was no exception.

What I am not sure that you realize is how much it hurts me.  I try not to let it show, not because I want to hide anything from you but because you are so very much like me.  We wear our hearts on our sleeves.  When we see someone bleed, the pain cuts us even deeper. I try to find that balance between letting you know I'm disappointed but not letting you see the pain.

I thought I had everything worked perfectly out. Going on what was written in front of me, I did.  The first volleyball game of the year was while I was in Colorado. There are too many girls on your team to play each game so I asked your coach for you to be one to sit out the first game.  The paper says that if you sit out one game you will play the next.  The calendar was showing 1 game for tonight at 6:30.  We needed to arrive at 5:30 for the group picture (the group picture that your coach amazingly was having re-taken because you were late for the first one due to your brother having a meltdown while I was out of state.  Your coach kinda rocks ;-)  you already knew that).  I've reviewed our plans for tonight with your brother just the right amount of times.  It was good for us to arrive early, he didn't have to walk through a crowd to find a seat, he had time to settle in.  Everything was going perfectly, according to my plan.

My plan, which I soon learned, was not exactly accurate. You had told me, likely more than once, that there would be 2 games tonight. I heard you, I swear I did... I failed at writing it down or worse yet actually letting what that meant sink in so I could better plan.  Instead my mind was focused on the fact that you didn't play the previous game so you would play the first one tonight... not because that's what your coach said but because that is how my mind processes.  When you came across the gym to let me know you would be playing the 2nd game, my heart sank.  Seriously, sank.

Every bit of me knew that I was already pushing your brother's limits with the 6:30 game. Especially after arriving at 5:30.  He should get his meds at 6:30.... we wouldn't be home until 7:30, he's typically in his room laying down watching tv by then.  Knowing the game you would be playing in wouldn't start until around 7:30 brought tears to my eyes that I didn't do the best at fighting back.

I was so angry. I need to be able to plan. I need to be able to prepare your brother. I need to be there for you.  Not because you need  for me to be, although I'd really love to believe that, but because you are my girl - I need to be there for you because I want to be.  I don't want to miss a thing and too often I'm pulled away.  I do my best not to let that happen.

Your coach came over, I let her know that we'd never make it to the 2nd game. I wouldn't get to see you play. I didn't realize there were 2 games.  Even if you telling me had sunk in, my silly - crazy thought process still would have believed you were playing the first game.  Honestly, that does not make sense - sometimes my mind doesn't.

As my heart sank, I wiped away tears while trying to keep your brother engaged in watching the warm ups.  My mind raced as I went through every possible option I had to make this work.  It wouldn't matter.  The reality was it's a school night, his body is dependent on his medicine and his schedule. 7:30 is entirely too far into our evening for him, pushing his meds back til after 8:30 would never work.  Him leaving with someone else would never happen, we both know how attached he is to my hip.

As I tried to accept what would be for the evening and debate with myself how far I would push your brother to stay with a growing crowd your coach walked back over to me.  She told me she was going to put you in for a couple minutes of the first match so I could see you play.  (I told you, she rocks) while it wasn't what I wanted (I wanted to see you play your entire game) it was exactly what I needed and I was (and still am) very grateful. I was able to watch you serve and score a point for your team. I beamed with pride... I'm still beaming.

During the rest of the game, I text friends who were there to find a way home for you.  Your brother was antsy and begging to go.  As soon as the ride was secured, the first game ended and your brother - as predicted - was ready to bolt.

It broke my heart to leave the gym and miss your game. If only I had followed through with what you told me about 2 games tonight, I would have talked to your coach and understood the details and what to expect. I could have dropped you off for pictures and come back (and fingers crossed made it inside the gym) with Parker to watch you play. In all fairness to my mind, that could have failed too - we both know it.  None the less, I will get more details before the next game and be able to better prepare your brother.  Your brother, who - by the way, did a magnificent job of modeling the ref :-)  You would have been amused!

I honestly thought life would be easier. I never imagined at 41 I'd have a 15 year old who would require as much attention as your brother does. As difficult at nights like this can be, I can't imagine life any other way.

I am so very sorry, again, that I let you down.  I am sorry that I watched your game through pictures that other parents posted and updates I was given. I am sorry that I didn't follow up on the details of "2 games" when you told me. I am sorry that I forget that the entire world does not live with the importance of "the schedule" like we do. I am sorry that your brother has Fragile X and has put you in the position of being the little big sister, that you have had to learn to not be able to do everything you may want because it's too much for him to handle, or to leave early, or to walk away from a meltdown while I work him through it.  I know it's not easy. It's not easy to be the little big sister ever.  It's even more difficult when you have Fragile X too and your own set of needs. I wish life was easier while still providing us with the lessons we have learned on this journey thanks to Fragile X.

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you Beth Wells Landry for the amazing pictures!

I wish I could promise you that I won't miss another thing, that I'll follow up better and plan better - but the reality is, I am human. I will certainly try and do my very best - that I can promise.  I know sometimes even my best will mean things don't go as planned and there will be more I miss out on.  I am incredibly proud of you for finding your place without me physically by your side 24/7.  I pray you know that a part of me is always by your side, always.  I'm always there with you, always proud, always smiling, always with you... even when I'm home putting your brother to bed while you are at the school, on the court about to serve the ball across the net to score another point.

I am sorry I could not stay, while I know you understand - I also know you hide your pain.  You are my child, we are two peas in a pod. I can feel the disappointment.  Sometimes, all I can do is relive the moments as you tell me about them over a Reese's after you get home and remind you how proud I am.

I love you so much.  I'll always keep the Reese's stocked... just in case.

1 comment:

  1. I'm just getting around to reading this.... and I feel your pain so much I teared up. It is so hard to be there for everyone when there's more than one kid in your family, isn't it? Impossible, really. Every day I short-change someone in order to be there for someone else. I just remind myself, even though neither my brother nor I had Fragile X growing up, or anything that complicated our family life as much as FX can, we still sometimes had to sacrifice for each other, and we both grew up to be fine people. Yep, you have to pay way more attention to Parker than you would a typical 15 year old, but Alison gets that, and is growing up to be a compassionate, selfless person, much moreso than she would if she were an only child or one with a typical brother. I tell myself constantly that Aliza is an amazing girl, much moreso than she would be if her brothers were typical. And for those times I have to miss things, I make it up to her as best I can, and tell her always how proud I am of her. She's not resentful of her brothers and the sadness I feel at missing a lot of her basketball games is my sadness and mine alone - SHES doing great, and that's the important thing.... all these things I know you already know because you are a tremendous mom, but I wanted to say them anyway!