You have no idea how much I love this baby.
Also, there's her Mic-Key button for those of you wondering.
I started writing this post in my head some time ago...but decided against it. I didn't want to give my negative thoughts the air and space to develop, grow and fester. Positive, positive, keep being positive. Additionally, I have a little person to consider in the future...a little person who will grow up and possibly read these very words one day. But I'm also a person. A person who has been helped immensely through the process of writing this past year and who has felt a sense of relief and release from speaking the truth. And by speaking the truth I often find that it doesn't grow and fester, but in fact it breaks free and flies away, taking the burden I carry with it. So here it is...the truth.
People have often commented on how positive we've been in regards to Lamp. What a great outlook we have and what a lucky girl she is to have us as parents. And they've been right. This past year has been really positive. And happy. And honestly, she is lucky and so are we. It's a perfect fit. My attitude has been positive. And completely honest and unmanufactured. I'm not really someone who can put on a happy face and hide my true feelings. This past year has been joyful, amazing, and wonderful as we've embraced the newest member of our family. It wasn't something I had to try to do. I wasn't being positive, I was positive. Lamp is a blessing. She is special and at the same time ordinary. We love her. Of course I knew there will be set backs and delays and hard things to deal with down the road, but it seemed like all of that was minor.
Well lately, it's been feeling major. For the past few months I've been experiencing what I have termed a perpetual newborn. Lamp is growing and developing in many ways--she is more aware of her surroundings, she is more opinionated and has likes/dislikes and knows what she wants. A natural progression for an 11 month old baby. Except she can't do anything about it. She's immobile--she can't move an inch on her own and she can't grab or hold a single thing by herself.
A perpetual newborn.
It's hard for her. It's hard to watch. And it's hard to experience.
While the slow progress a baby makes towards independence in the first year of their life seems rather insignificant considering how much work goes into their overall care, I can tell you those little things they do on their own really add up. At this age Princess Sparkle was walking, feeding herself, and playing independently for longer amounts of time. Lamp has a few toys that she can play with on her own, but they've long expired the natural cycle of a babies interest. But she tolerates them again and again surprisingly well. Walking up and down the toy isle trying to find something that would be suitable for her has brought tears to my eyes more than once. I've made contraptions that help--like a wrist band to attach small objects to, or figuring out a way to hang toys in front of her--but even those are short lived. Books are usually pushed away these days. There's her prosthetic arm...but even the progress with that has been a lot slower than I thought. She goes to physical and occupational therapy where I keep waiting for a breakthrough. Last weekend we bought a mat--like one a kid might use for wresting or gymnastics--so she could sit without being in a bumbo or highchair and without fear of injury if she falls. (Since she doesn't have hands to break her fall we can't just leave her on the hard floor without some sort of protection). The idea is to hopefully encourage scooting or hopping on her bum...something her PT says she's really close to doing. But so far nothing.
Her lack of physical abilities have been replaced with a lot of vocalization. Mainly screaming. She says the word dada or dadee and sometimes mama, uh-oh and some other sounds but it's the scream that has become her standard call. A scream my husband references to a velociraptor. I, however, tend to liken it to the infamous screeching eels from the Princess Bride. Since she can't get anything on her own and she can't talk the scream has been her best method of getting, going and doing.
It's a little wearing.
But here's the kicker...when I try to comfort myself with the positive thoughts, the thoughts that have been so natural and unmanufactured, I come up short. I think about other kids I've heard about or read about with similar situations and I still find reason to despair. My prosthetist told us about a girl a lot like Lamp who has similar legs and a missing arm but with one sound arm and hand. She was telling me about her legs to help me understand that Lamp will walk ....but all I can focus on is the sound arm and hand. Oh my gosh! A hand? To have a hand. If Lamp had a regular hand she'd be fine. Or there's a website of a mom who has a daughter with a missing hand and lower arm. I can't even read that website anymore. One limb? She has one little limb affected? Is that even a disability? I snidely think. And then I take it a step further...I imagine what Lamp would look like with long chunky baby legs, and fleshy baby arms complete with soft baby hands and I see her cruising along the couch, grabbing a toy or picking up finger food and bringing it to her mouth. Usually these are just flashes and almost unconscious as I quickly snap back to reality. But it still happens and it's unfair. To me and to Lamp. And I sink a little further. And the thoughts become a little more hopeless and a little more dim.
I don't know.
Last weekend we were at a get together enjoying the sun and the water. It was a pleasant day. As I sat there with another mom of a newer baby, she noticed Lamp's scream and casually asked Does she get frustrated a lot? Being caught off guard my answer came out short and curt, revealing a tension and bitterness that had not been there seconds before.
Yes. She does.
*I just want to end this post by saying I was right...in the days I spent writing the post I already feel a little better.