It’s E’s 4th birthday. We spent the past few days celebrating her special day – my husband thinks it’s ridiculous but I’m a firm believer in the birthday WEEK celebration. Today, I sat down to update her book of love letters (it’s a notebook filled with pictures & letters I’ve written to her) and as I was flipping through the older letters, I started bawling. Actually, to be honest, I’ve been crying this whole weekend. Not necessarily for the reasons that other people cry on their kids’ birthdays. For me, there is a lot of sadness mingled with the celebrating. Yes, birthdays are a big deal in our family and a very special affair but they also remind me of when E was much younger … back during a very innocent time when we didn’t know anything about special needs and autism and how big a role they would play in our lives. As proud as I am of her, and much as she has grown in her own way, at these yearly milestones I’m still reminded of all those hopes and dreams I had for her when she was first born. Will she still be able to achieve the things she wants to do? Maybe … I don’t know. All I do know is that her path is going to be much more challenging and difficult than it will be for others. As a mother, my heart aches very much for her because of this.

We all went out to dinner as a family on Saturday night and the waitress kept asking E questions. How old are you? (That one she was able to answer.) Are you enjoying your birthday? How’s your dinner? Obviously, E completely ignored or just stared blankly back at her. At the end of dinner, the wait staff came out to sing happy birthday and my sweet, precious girl was so excited that she was frantically flapping her arms the entire song. The next morning as I was thinking about it, I burst into tears. The past few years, we’ve been able to enjoy celebrating her birthday out in public without strangers noticing anything amiss about her. So what if a 2 or 3 year old waves their arms or doesn’t answer your questions? To a certain extent, those behaviors are still common in kids that age. But we’re starting to enter the age when it’s a noticeable difference when E doesn’t pick up on the social cues she should or act the way that neurotypical kids her age do. I can’t help but feel a sense of foreboding, a ticking timer on how many more years we have before I start getting the stares. The what’s wrong with her … whispers. Pretty soon, she’ll be a tween and at the age when her peers will be asking to have birthday parties with their friends or spend time alone at the mall. Will E ever be invited to these parties when she’s bigger? If she wants to have such a party, will she have anyone to invite? These are the small burdens that make my heart sink and my eyes well with tears. They seem trivial, I know, but at the end of the day I just want her to be happy and to have people around her who love her (other than her family). As a side note: I still think it’s absolutely adorable when she flaps her arms. She only does it when she’s very happy or excited and I can just see the joy exuding from her little arms and hands as she flaps. I think it’s so cute and when I think about how other people might snicker at her because of it, it makes me even more sad because they’re missing how sweet it is to just see someone show pure joy without abandon.

Sometimes, I wonder if there will ever be a year when these kinds of thoughts don’t cross my mind on her birthday. I guess in one way, you can say that I still feel a sense of loss for what could’ve been and particularly for what I assumed would’ve been when she was younger. Sometimes when I think back on those first few months/years with her, I’m angry at myself for so naively believing that everything would come her way. Of course she’d have friends. Of course she’d talk and tell me silly things. Of course she’d grow up to ask me about boys and makeup. Of course, of course, of course. But none of these things are guaranteed to anyone, even parents of typical developing children. The simple truth is we just never know what will happen; tomorrow is never promised to anybody.

I hear the cynicism in my voice as I write this and I dislike that about myself, too. I’d like to think that this unique set of circumstances that God has placed me in simply gives me a sobering sense of reality and priorities but oftentimes I know I let it weigh me down more than it warrants. I just want to say that I know that there are many reasons to be joyful, too.

Today, I’m so thankful for the past four years that we’ve had our with our beautiful little girl. I don’t know what the future holds for us. I’m sure there will be many more moments of triumph and laughter, but also many more moments of defeat and devastation. If I could change any of her future for her, I would. If I could protect her from any of the hard moments, I would. But I can’t, so I’ll do the only thing that I really can do – look to the Savior, cling to the cross, pray for grace and miracles and keep my eyes heavenward and towards eternity.