Wednesday, April 6, 2016

My non-triumphant return to blogging

Today was a rough day.  Let me clarify, it’s been an interesting 48 hours.  Yesterday, for an unknown reason, Tera swallowed a magnetic marble which resulted in an ER visit.  Fortunately, there was only one and it should pass on its own so beyond the initial stress of wondering how bad the situation was going to be, it was a really quick visit to the ER and now we just await its passing.  

And so why my non-triumphant return to blogging? Why now when I haven’t had nearly any opportunities in I don’t even know how many months? Why is today so significant? It’s not, it was just a rough day that resulted in me having to acknowledge what our lives will always be: a challenge.  I don’t mean this to be overly dramatic, but when I really break it down, the minute we decided to become parents, we accepted that our lives were going to be more challenging.  And the minute we learned of Tera’s diagnosis, they become even more so.  

Tonight Tera had her first swim lesson in a new class.  She’s been at the same level since she started last August and at the place where she takes her lessons they are continuous classes and when the kids master the skills for that level, they move onto the next one.  Except in this case her class was for up to four year olds so when she turned five, she was moved to the next one.  Don’t get me wrong, she had made a lot of progress in that first level and she was close to moving up anyway, but now here she is.  

Transitions for Tera, like many other kids, can be difficult.  So this being the first time in a different lane, with a different teacher, and with only one instructor (we’ve been spoiled and many times Tera ends up with a one-on-one instructor) it was a challenging session.  I always watch through the glass with all the other parents and let me say, it was a stressful 25 minutes.  She struggled with waiting for her turn, she struggled with following the instructor’s directions, and she struggled with not being able to do the same things the other kids could do. As I watched all the other parents calmly watch their kids do their thing, I almost cried right then and there.  Because Tera mainly struggled tonight. With a clearer mind now, I realize that although Tera cannot do the same things the other two girls in her group can do (yet) it was also her first time in this new level.  I also know that the new circumstances very well may have contributed to her inability to listen (she had an otherwise great day at school).

But I also struggled tonight.  I struggled with the fact that most of the other kids were doing what they were supposed to be and didn’t have to have one of the lifeguards within a foot or two of them so they didn’t endanger themselves or anyone else.  I struggled with the fact that once again, Tera can’t do what the other kids can do.  

Then came the shower afterwards.  This is by far the most challenging part of swim lessons with Tera.  There are a wall of showers and since I usually have work clothes on I can only instruct and encourage Tera on what to do, I can’t do it for her.  Tonight was the worst.  She put way too much soap in her hair and then refused to keep rinsing.  So after forcefully encouraging her many times to keep rinsing, and her refusing, I had to admit it wasn’t going to happen and with a lot of anger, pulled her out and had to get her dried off and changed knowing I was going to have to give her a bath when we got home to rewash her hair.  She was crying in the changing room and I felt like the worst, most inadequate parent there.  

On the way home, the stress of the past half hour along with an avalanche of other feelings came crashing down as I cried the whole five minute drive home.  I was angry, sad, frustrated, guilty, and heartbroken.  I was upset about the not listening, her struggle with the skills, and lack of potty training.  I was upset about the multivitamin, probiotic, omega-3 (for her skin), allegry medicine, iron supplement (to hopefully help with her sleep issues), Miralax (for her stomach issues), and nebulizer that all have to happen around dinner time.  I was upset about the therapies, IEP meetings, doctors appointments, specialists, and communication between everyone that has to happen.  I was upset about the search for shoes that will accommodate her orthotics, but that won’t slide off her feet so easily that she takes them off constantly and throws them.  It all hit me at once and I couldn’t handle it.

As I got home still in tears, I got Tera washed up, changed again and before heading down to dinner, we tried again to go potty.  And as I sat there with her it all hit me again and I just couldn’t stop crying.  Tera in all of her infinite abilities at the age of five, hopped down, sat on my lap and just held me.  She patted my back, gave me kisses, and as I cried and apologized to her, she looked me in the eyes, put her finger on my nose and said “boop”, which is a game she and I have played for a long time.  I couldn’t have thought of a better way to instantly bring me to my senses.  I smiled and her whole face lit up.
Tera "booping" her Dad
This little girl is amazing.  Her sense of empathy is beyond compare.  While she is most certainly the reason behind many of my tears, she can also stop them in the most amazing ways.  In the midst of her aggravating swim lesson, she jumped to her instructor with such glee and the most amazing smile of complete joy, that I couldn’t help but smile back.  

And so this incredible influx of emotions is the reason behind my non-triumphant return to blogging. I miss this so much and as much as I would love to promise to myself at least one a week, I know I can’t set myself up for that disappointment.  So I’ll add it to my list of “when I have time” items and “things I can do when I want to relax” choices.  I have so much more to share on the development and our lives with these two amazing girls, so I hope to be back again soon.

1 comment:

  1. I love reading your Blog. I have a 6 month old grandson that was diagnosed with Fragile X In Vitro. We already notice some delays and like your little Princess, he started Therapy at 3 months old. Although we do not know what the future holds, we know that no natter what, he is going to be the best he can be and that's all we can ask for. Thank you for sharing your Journey with us. It keeps others Spirits up when we are ready to throw in the towel. God Bless You and your family.