Dear Addie,
This week I was reminded of the balancing act that goes into providing for each and every person, special needs or not, in this family. Our emotional forecast can change like the wind leaving us either crying with joy from celebrating the smallest of challenges being achieved or out of sadness due to the overwhelming amount of guilt that can creep up almost daily for a variety of reasons. The emotional pendulum is constantly swinging – for all of us.
The last couple months have been some of our most challenging to date. My heart hurts because we are all getting a front row seat to witnessing your outward expression when you are clearly internally struggling - there is a lot of screaming and a lot of tears. I honestly can’t imagine the actual internal battle that you are going through. As parents we want to be able to make everything better with our parental wisdom that often comes from a “been there, done that” approach. While just about everyone has perhaps a sensory issue or two, I haven’t been where you are, on the level you are at. With so much we have learned thus far on this journey, it almost seems as if we have hit a brick wall with our knowledge, instincts, and bag of tricks on how to help you in these more recent struggles.
If I’m being honest, there is a numbness that has come over me. I feel most days consist of just going through the motions. Getting from point A to Z all in a day. The guilt of wondering “is it bedtime yet?” The guilt of not having enough of mommy and daddy to go around. The guilt of a short uncalled-for answer to someone because maybe you expressing your irritation of something was now wearing on me a bit. The guilt of watching my patience become a bit thinner. The guilt I haven’t talked to some of my dearest friends in months. The guilt of sometimes wishing our journey was different.
I’m tired. You’re tired. We’re all tired.
I used to pride myself on being able to effectively function as a proper human on little to no sleep. True superhero type stuff! Nowadays I wish I could sneak in a nap in before bedtime (Yes sleep before sleep) and I’ve also discovered the snooze button can be quite magical if allowed to use it!
It affects us all. Maybe not in the same emotional way or level of tiredness, but it’s there – the pendulum swinging away.
This weekend my heart broke when I was forced to decide between a want and need and left me witness to an emotional response from your older sister Clara.
Allow me to explain.
Daddy had to go out of town for work and it just happen to be the same weekend as the end of season soccer tournament games for Clara and Gabe. You see Addie, Clara and Gabe love soccer and were very much looking forward to the excitement that this tournament weekend brings! Knowing it was just mommy dividing the attention amongst the three of you and as guilty as it made me feel (welcome back guilt), I attempted to get a sitter for you because I thought Clara and Gabe deserved my full attention of something they passionately love to do - especially this weekend. Unfortunately, no one was available, so we packed a bag of activities, snacks and extra clothes and away we went, in the rain (everyone but mommy was excited about this game day weather), for a few hours of soccer.
Now If I was a betting woman (side note: I’ve never been good at gambling – nickel and penny slots are my jam!) I would’ve thought you’d have been splashing in the mud the first chance you got, but you seemed a little annoyed more than anything on this day and decided to sit in a chair even staying under an umbrella at that! Hmm, not running all over the place, odd, but I’ll take it! Go Clara Go!
Our family naturally being a spectacle and not wanting to cause disturbance to fellow spectators and players, we chose to sit not on the sidelines but by the goal quite a ways back.
With a few rounds of flash cards and some pink squares to keep you busy, we seemed to make it through the first half with you remaining seated and minimal fussing.
It wasn’t until the beginning of the second half that you started in with the “Ms. Mom I want bye byes please” repeatedly progressively getting louder and louder. That’s when I noticed you were soaking wet with urine and badly needed a whole clothing change at this point! Ugh!
With the rain picking up, I knew I couldn’t leave our chairs and stuff there while we went back to the van, so I had Gabe (who was practicing with some of his teammates for a later game) help me pack everything up and carry it to the van. That’s when I looked over to a flushed face Clara signing to me “what are you doing?” While I was proud of her ASL skills in the moment, the confusion and disappointment on her face when I told her I had to leave to go change you broke my heart. On the surface, it was a want and need situation, but my mommy guilt kicked in and thought this may have been more of a need/need situation. This was important to her and she watched me just walk away.
You see Ad, Clara, and Gabe both are the absolute sweetest siblings we could’ve ever wished for you! And while I struggle to understand the “been there, done that” with you, it’s very much the same for them. I was the baby of three in my family and never had a sibling that just required more. I know they, without telling us, feel jealousy, worry, sadness and perhaps even their own level of guilt in all this and truly have every right to all those feelings. We are all human and this is 100% OK. The blessing here is they don’t rest there, their pendulum swings.
You know what Addie, you never made it out of the car after that clothing change. Clara came down showed us her medal and told us all about the remainder of her game. I told her how proud I was of her hustle in the first half and she ensured me she didn’t play as much in the second half. Truthfully, I think she was just saying that, so I could somehow feel better about having to leave - yes, she’s that sweet.
After some lunch (Wendy’s that Gabe got all set up for you to eat in the van without me even asking), it was time for Gabe’s game and you were still insistent that watching soccer was not what you wanted to be doing today. After sitting in the van now having missed the first half of Gabe’s game, Clara offered to watch you, so I could catch the second half (that ended in overtime and a shootout!)
You honestly got the jackpot on siblings! They love you, see when you struggle, put their own feelings aside and pitch in to help. Amazing.
Another fellow special needs mama, Katie Corkern once wrote to special needs siblings of how amazing they are:
“You know true love, you know true heartache and you know what’s truly important.”
I couldn’t agree with her more.
Addie you are a beautiful blessing to our family and are loved beyond measure! I hope you always know that. You continue to teach not only me but this whole family more about life and ourselves each and every day. We know you are struggling and although we don’t feel the struggle to the degree in which you do, we feel it too. We are all here for you. We love you.
One team, one dream.
Love, Mom
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