Preparing Myself

I found the following post on my hard-drive. Elijah was only nine months old when I wrote it. I didn't post it at the time because I must have thought it was too negative. Obviously, some things have changed since then (cerebral palsy diagnosis- yep, we've got one). But, when I read this tonight, the last paragraph filled my eyes with tears. Almost two years have past since I wrote this and it's still relevant to me today...

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I've gone through a lot of emotions during the last nine months. I can thankfully say that most of those emotions have been positive. That doesn’t mean that there aren’t bad days. It doesn’t mean that there isn’t a certain grief process that occurs when you know that things didn’t go as they should have gone.

I know denial is a big part of the grief process. So is anger. I have experienced my share of both. I think those are legitimate emotions. The past few months have caused me to come to terms with what happened on a rainy night nine months ago. It’s definitely a process and I’m sure it’s a process that will continue for years to come.

I’ve been trying to prepare myself for a cerebral palsy diagnosis. The fact that Elijah doesn’t have a diagnosis yet is a really good thing and I can hope that he never will. To me, no diagnosis means that he doesn’t have severe symptoms and therefore is doing really well. That said...I know I need not live in a fantasy world where things will only happen as I would like them to. Don’t get me wrong, I think those of you who read these journals about Elijah’s life are well aware how positive I am. That’s just the way I am and I really like that about myself. There is another side too. Sometimes I’m afraid my positive attitude clouds over the seriousness of what happened to Elijah and what it means for his future.

Wait, what’s with all this negativity?! What happened to the glass is half full Lisa? Don’t worry, I’m still here! I think what I’m trying to say is that I’ve worked through some of the denial that has plagued me. I’ve accepted Elijah’s fate and I am coming to terms with the fact that Elijah indeed has “special needs” as much as I hate to write that, as much as it hurts, as much as I wish it weren’t true. My idealist self can’t change what happened and I can’t go back in time. So, I’m preparing myself. I’m preparing for a future that doesn’t look like the one I had imagined. I’m preparing for doctor’s appointments and unfounded predictions about my son’s future. I’m preparing for titles to be attributed to my son that I don’t want to hear. I’m preparing for advice from strangers and insensitive comments. I’m preparing for a parenting life that’s a little different than most.

But most of all, I’m preparing to be happy. I’m preparing to smile every day. I’m preparing to live each day to the fullest, to love my family, my life. I’m preparing to defend my son. I’m preparing to be positive, to not sell out my little dude, to give him every opportunity to have a full recovery. I’m preparing to never give up the fight for his complete well-being. I’m preparing to teach my son that he can do anything if he works hard enough and if he believes enough. I’m preparing to give it all up to God, as hard as that is at times. I’m preparing to just be.

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Ordinary Days

Last night was a bit rough. Elijah was up every 30 minutes, sneezing and coughing. Eventually, at about 3 am I decided to bring him into bed with us. Normally, being in mom and dad's bed is too thrilling for Elijah. He'll look at the alarm clock, his monitor, or anything that emits light and laugh. Laughing isn't really conducive to sleeping. We learned long ago that sleeping with us just didn't work and we stopped bringing him in our room. A blessing, perhaps, to have our bed to ourselves. But last night was different. Elijah snuggled in laying on top of me (just like he used to when he was a baby), wiped his slime all over me, and went to sleep. He slept until the morning and we did too.

Whenever Elijah gets all snugly, I get nostalgic. I remember in these moments that this will all be over soon. Elijah will only be this little once. Someday soon he'll be too big to lay on top of me in our bed. He'll be too big for me to cradle in my arms. He'll be too big to pick up and rock. He's already getting too big.

Perhaps this is a lesson that has come slower to me than most parents because Elijah achieves milestones later than his neuro-typical peers. Sometimes it seems like we'll be stuck in a developmental stage forever. And then everything changes and I realize that soon he'll be a full-fledged boy, and teenager, and then adult. It'll be here sooner than I realize. I'd better soak it up, take it all in, and enjoy every single moment. Milestones or not, Elijah will get older. Things will change.

Elijah's babyness is pretty much gone. He's a toddler, a little boy - there really isn't much baby left in him. And I wish I'd have enjoyed the baby-Elijah more instead of worrying so much (something I hear a lot of other special needs parents say too). But what I can do is to enjoy him NOW - exactly as he is. I can enjoy each and every ordinary day we have. Because I'm sure my parents look at me, their youngest, and think "Where did the time go?" (Thanks for everything mom and dad!).

Ellen shared the following video on her blog and I wanted to share it here too. It's author Katrina Kenison reading from her book The Gift of an Ordinary Day (now I want to read it!). No, it's not about special needs and some of the things the author says won't be relatable to all parents. But I think the lesson is the same...to enjoy every single moment. Milestones or inchstones, childhood is gone before we know it. We'd better enjoy every moment.

If you're a parent you'd better grab your tissues, because I can pretty much guarantee that your eyes will leak.




I'm going to enjoy this ordinary therapy-free day at home with our snotty-nose boy. I hope you have an ordinary day too.

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A First Time for Everything...

We've been trading sicknesses in our house for the past month. It started with a sniffley nose for Elijah. Then I got sick. Then it was Andy's turn. Weeks later and we're better, but still coughing once in awhile. All Elijah had was sniffles. Well...

Little dude has his first real cold. Yes, you read that right. At two and a half, Elijah is sick for the first time ever. He's been ridiculously healthy (especially considering his medical history) and we're certainly not complaining. My heart goes out to families who have to battle illness constantly with their little ones. It is no fun to take care of a sick little one.

Elijah's had stuffy noses before, but this time his nose is dripping constantly, he's coughing, and he's a little bit grumpy. It's a legitimate cold. He was supposed to have his Early Intervention playgroup (which he loves) and occupational therapy (which he also loves) today, but instead we're staying home. Bummer.

The Infamous-Sneeze-n-yawn. :( Feel better soon, little man.

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Operation Sleep

When I was pregnant, we bought a convertible crib which transforms to a day bed and finally to a twin bed. This was way before we knew who Elijah was and certainly before we knew that he would have special needs. Once we realized that he desired a different sleeping arrangement, we toyed with the idea of getting him something different -something closer to the ground and something that would have railings - but decided to give the day bed we have already a try. He was doing pretty good just with his mattress on the floor, so two weekends ago we decided to transfer Elijah from his mattress on the floor to his day bed.

Despite the post prior to this one, I am happy that we made the decision to forge ahead with this transition to a big boy bed. After all, Elijah wasn't really sleeping through the night before we made the switch. Best of all, Elijah seems happier about sleep. He beams when he gets in his bed and he seems to be proud of himself. He didn't like being boxed in his crib and would cry every night when we put him to bed. Now, he seems to like knowing that he can get out of bed if he wants. Of course, the new challenge is teaching him to stay in bed all night long.

I know it takes time and training for any kid to sleep in a bed, not just those with special needs. I know that little ones sometimes fall out of bed when they're learning and we've set up pillows as a precaution. We worry, of course, that he'll hurt himself. I'm not so much worried that he'll roll off of the bed (because of those pillows), but that he'll fall from a standing/jumping position. But, I have to ask myself... is this any different than any other parent making this transition? Perhaps in some ways, but I think it's mostly the same. Elijah is highly mobile, desires to be independent, and knows how to get down from his bed safely. So, we'll make his bed as safe as possible and try to teach him how to sleep in a little boy bed. We think he's ready and he deserves to be treated the same as we'd treat any other child, right? At least that's what I keep telling myself. That doesn't mean we're not afraid he'll hurt himself. We are afraid. But I don't want that fear to hold us back from giving him the opportunities to grow and develop, just as any other kid.

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Dear Elijah,

We spend between 12-14 hours a day together. I love spending time with you, playing with you, and being your mom. But, do we really need to hang out at night time too? Was it really necessary for you to get up 4 times last night? I mean, I like to see you and all, but not at three in the morning. You will be two and HALF in a couple of days. I like to sleep, perhaps as your mom I can teach you the joys of sleeping. It's really fun, actually. So, do you think you could work on it? Try to stay in your bed and sleep until it's time to get up in the morning. That'd be great, thanks!
Love, Mom

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Once Upon a Time in Elijahland...

Me: Does my hair smell like puke?

Andy: (sniff) No

Me: Really? Smell it. Doesn't it smell like puke?

Andy: (sniff) No

Me: Are you sure? Smell it again, because I think Elijah puked on me when I was carrying him around on my shoulders and I think I smell like puke.

Andy: (sniff) It smells like hair.

This is what happily ever after looks like folks. :)

(Photos from the MN State Fair 2008)

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If You Need a Laugh...

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The Director of Awesome

I've been in a deep funk lately. I have about 15 partial posts written, saved and ready to be finished and posted. But I get distracted - sometimes by Elijah and sometimes I just have to keep writing the posts that keep popping in my head before finishing another. Mostly it's hard to post about the harder things and when you're in a funk you're going to be writing about the harder things. It feels like ripping my chest open and saying to the world, "Okay, here's my insides everybody. Take your best stab." I want to share it, though, and I will in my due time.

But not today. Today, I'm going to talk once again about how awesome our little man is. Because he is awesome.

In order to fully understand why today's events were so awesome, I think I need to give some background info. Awhile ago, I wrote one of those 'ripping open my chest' posts about Elijah's difficulty communicating and my frustration. And at the end of the post I mentioned a short seminar I went to given by Teri Kaminski-Peterson, author of The Big Book of Exclamations. She talked a lot about the pre-symbolic stage of development and a lot of the stuff she said has stuck with me. In my own way and the best I know how, I've been trying to teach Elijah some of the things I learned that night.

You see, words (and gestures) are symbols...they are a representation of something else. Before we start to talk when we're wee ones (yep, I just said wee ones), we have all sorts of precursors to speech that need to occur first. To my delight, Elijah has a lot of the precursors to speech. For example, he has some reciprocal interaction. If you tickle him, he might laugh, run away, and then come back for more. In his own way, he's asking for you to tickle him again, reciprocating. Sometimes, he will imitate you (another precursor to speech). That night I listened to Ms. Kaminski-Peterson's talk, I realized that the ares of communication Elijah struggles with the most are directly related to his vision.

One thing babies do before they ever utter a word is to direct your attention to something. Babies will see something they want, get your attention perhaps by babbling, and then they will point at the thing they want. They direct you towards their desired object. I wondered how Elijah would be able do that. How can he direct our attention to something if he can't even see it?

I started thinking of ways to teach him how to direct me. He loves his Elmo toy and we put it on the counter out of his reach. He'd whine for his toy, I'd grab his hand, walk him over to where I was standing and model what I wanted him to do. I'd take his hands and pretend to have him pull on my pant leg while saying, "Mama mama." And then I'd respond to myself "What do you want Elijah?"while grabbing his hand. I'd walk him over to Elmo, placing Elijah's hands on the counter. "Oh, you want Elmo! I can turn him on for you." And repeat this scenario over and over and over. Yes, it's kind of awkward having a conversation with myself, but I was teaching him how he could direct my attention.

Are you still with me? We're getting to the good part.

Lately, Elijah has been reaching up to Andy and me to be picked up. It's the sweetest thing ever. He never used to do that and we've been enjoying the hugs he gives. Today, Elijah was reaching on my leg. I was about to pick him up when and a light bulb went off. This is what I've been trying to teach him. Maybe he doesn't want to be picked up, maybe he's trying to tell me something. So I grabbed his little hand and asked him, "What do you want Elijah?" To my surprise, he started to walk through our kitchen. "Where are we going Elijah?" Elijah walked me into our family room and laid down on the floor. Can you hear the shouts of joy and amazement?! No? Well, we change Elijah's diaper in our family room. He wanted to have his dirty diaper changed! He communicated his desire to have his diaper changed. Um, if you're not with me yet, that's HUGE for a multitude of reasons. He knew that he needed a diaper change for one thing (which is kind of important for potty training) and he told me about it by getting me and bringing me to where he gets changed. He directed my attention to a need of his. Now do you hear the shouts of joy?

And later, Elijah directed my attention to Elmo by clawing at my leg and walking me to his toy. Two times in one day; it's not a fluke. He's getting it. And yes, he is awesome. Not that you didn't already know that.

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No One Told Him He Wasn't Born in the 80's

Elijah has been grabbing his refrigerater toy off of the fridge and carrying it around the house. It's quite the feat for a kiddo who has a difficult time using his hands. And quite impressive that he can find the white handle since our fridge is white. Take that cortical visual impairment!

Usually, he will carry the toy by the handle and joyfully run off listening to the music. When he drops it, he'll often have to use two hands (woohoo!) to pick it back up. Once he has it in his grasp, he just might rest it on his shoulder (most likely to avoid using his left hand). This always reminds me of those "cool" guys who used to carry their boomboxes on their shoulders in the 80's. Let's just hope Elijah doesn't start begging us for some parachute pants! On second thought, if he were able to ask for parachute pants you'd better believe he'd own about ten pairs by tomorrow.

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