Tuesday, May 14, 2013

We can do hard things

 I have a confession to make: I am a hypocrite. A big fat hypocrite. But I'll get to that in a minute..

Sometimes I wonder how parents in the special needs community view my blog. I mean.. do some feel like I'm not very worthy to declare myself "special" mom enough to write a blog on the trials and blessings that come with this life because we don't deal with a lot of 'extras' that others do? I'm well aware of my many friends to whom the term "special needs" has an entirely different meaning than it possibly does to me. I know many who deal with health issues we don't such as g-tubes, trachs, 24 hour oxygen, O2 sat monitors at night, ongoing medications, specialized therapy tools, frequent illnesses and hospital visits, delays and disabilities more obvious than Ella's, and so on.. 

Although we have been down that road of hospital visits, NG tubes, and medications before, that hasn't been a huge part of our life lately. The term "special needs" is incredibly broad and covers a huge spectrum of disabilities and I've learned that although one family may deal with certain issues, there are others who deal with entirely different ones unique to their situation. It's hard to compare and I sincerely hope no one judges me on our lack of certain needs because there are definitely other things we do struggle with.. 

One of the main ones being Ella's anxiety and nervousness in new situations. It may sound petty in the grand scheme of things but it really is something difficult to live with. The only reason Ella isn't walking yet is her fear of falling. She is so anxious around new people (or even many she knows..) that if you're not on her VIP list of 4 total people in this world that can hold her, you better back off. She gets excited to see her bath water running, but screams bloody murder when you set her in it. She refuses to sit in a stroller, cries if she has to ride in a different vehicle than the one she's used to, refuses to be set down, throws a fit if I'm shopping and attempt to try on an outfit (which made finding a dress for an upcoming wedding really fun..), and dramatically clings to me in any kind of new situation. Don't get me wrong, I love my Ella girl to the moon and back and have accepted the way she is. It's just rather inconvenient at times. 

Not to mention, watching someone you love so much have this debilitating fear that holds them back from experiencing many simple joys in life is devastating. It's difficult to watch other kids her age participate in activities she would love, and see her holding back. It's heartbreaking to watch her miss out on things I know she would love because she is held captive by her own fear. 

And here's where the hypocrite part comes in. See.. I tell my boys all the time that it's okay to have to do hard things. That hard work will pay off in the end. That the accomplishment and pride you will feel at the end of achieving something difficult is far longer lasting than something that comes easily. That, once again, it's okay to do hard things. Yet lately I've found myself discouraged with Ella's lack of progress in certain areas. I felt like we were taking 2 steps backwards instead of the forward direction I so desperately wanted to go. It seemed like her anxiety was getting worse, not better. I was already working hard at speech and sign language and walking and everything else.. I didn't want to have to work hard at another thing. I didn't think it was fair that something so seemingly simple such as sitting in a stroller, swinging outside, or taking a bath should be so darn difficult for us.

Swinging was a particularly touchy subject for me. As long as I've ever had kids, they have LOVED to swing. I can't even estimate how many countless hours I have spent pushing my children in swings. The boys would seriously swing for hours and hours on end during the summer. Before one of them could pump (which was only last summer) I had killer biceps from pushing them both at the same time for such a large portion of my day. And then along came Ella.. When we had our first nice spring-like day a few months ago I thought nothing of walking outside and plopping her in her swing next to her brothers. It seemed like no big deal. I was excited at the prospect of spending many more hours this summer pushing her swing high in the air and listening to her shrieks of joy. (It also possibly had something to do with the fact that I wouldn't be holding her during that time...) But Ella had other plans. Oh, there were shrieks all right. Just not the kind I had anticipated.. These shrieks sounded more like I was doing something horrendous like ripping her tiny little toenails out one by one than something that should seemingly harmless like swinging. Nothing could calm her until I rescued her from that pendulum of doom. I thought maybe her reaction was due to just getting over one of those sicknesses we had so many of this spring. She just wasn't feeling good and wasn't ready. But she would be next time. So when we had another nice day I tried again. Same result. And it was the same every single time I tried to push her in the swing. She wanted to swing, reached for it, but then screamed in terror when I actually put her in it. It's hard to understand what she was so afraid of, but she was. I watched in desperation while she went into hysterics, knowing I couldn't leave her carrying on like that, but wondering how I was going to teach her that swinging is not scary? And since Charlie can't quite pump well enough to swing by himself yet (and I think he enjoys my company..) I would feel obligated to stay and push him for awhile, leaving me to hold my screaming Ella with one arm and push Charlie with the other, leading to many a night spent cuddled with my heat pad after the kids went to bed. And I'll admit it. It also led to many tears. Not all from Ella.

Why wouldn't she just swing? I'd see pictures of other CdLS kiddos swinging and they liked it, so why couldn't Ella? What were we going to do all summer if we couldn't swing? And if I could barely hold Ella and push Charlie now, what would I do 2 months down the road when my stomach is even bigger and I'm even more uncomfortable? It wouldn't be fair to Charlie to just not push him all summer because of his sister's anxiety, but would it be fair to let her scream in her swing while I pushed her brother? It seemed so unfair to everyone. It seemed so hard. And I didn't want to struggle through it. Throughout the past few weeks, we've kept trying to swing, but with quite the begrudging attitude on my part I must say. I kept setting her in it, she would cry, I would get her out, comfort her, and continue with the backbreaking work of pushing Charlie and holding Ella. Over and over again. With seemingly no progress. I felt desperation setting in as I anticipated the long summer ahead.                                                                                                  

And then last night. We were outside. I walked to the swing set. Ella reached for her swing. I sighed and sort of rolled my eyes. "Here we go.." I thought as I set her in it. And to my surprise she sat. And she didn't cry. She looked nervous, but she didn't let it overtake her. I pushed, expecting that to be the end, but to my utter shock it wasn't. She held on. She smiled. She laughed. The sound of that laughter brings tears to my eyes as I think about it right now. The most beautiful sound I've ever heard-the sound that washed away the entire past few months of frustration in a single second. She LOVED the swing!!!! I cannot contain my excitement right now. Not only did she do something HUGE by overcoming the fear that has consumed her for so long, but now I don't have to hold her all summer! 

I am so so SO proud of her. 

A picture of this girl swinging might be cute to some people, but to me it means so incredibly much more. 
It means her fear is not in control anymore. It signifies an overcoming of obstacles. 
It means we can do hard things. It gives me such hope.

And boys if you're ever reading this.. it means your old mom really does give some pretty good advice.
Now go eat your broccoli. 

1 comment:

  1. Glad this is going better! Out of curiosity does Ella's OT work on sensory processing with her? Have you filled out a Sensory Profile? ;) I just can't turn my "OT" off!