The Drowning Gymnast

I can’t help but feel like I am drowning at times. It’s like the laundry, the dishes, my overflowing email inbox, the therapy and doctor appointments, and the uncertainty about the future are all going to suffocate me at once. Sometimes I’m so overwhelmed and feel like I can’t handle it all.

I’m like an Olympic gymnast, balancing on the beam between crazy optimism and trying to be realistic. Most of the time, I’m able to keep my balance. But, sometimes all of those things suffocating me cause me to fall to the ground.

If I land on the side of optimism, life seems good – often better than it really is. I seclude myself in Elijahland, thinking that everything’s going to be all right. Elijah will be just like his peers when he grows up, I tell myself. No one will even know what happened to him during his birth. I pretend that nothing is wrong; ignoring those emotions I’d rather not touch. I’m secluded, in my own world with my boys.

Then I find that I’ve fallen off my beam again and those emotions I tried to avoid have smacked me in the face. This time I’m on the side of reality and I ponder what my son’s life may entail. I wonder if he still won’t be talking or feeding himself when he’s 5, 10 or 15. What if…what if…what if…? It’s not a pretty place to be. I wonder how I’ll handle him when he’s older. What if he can’t understand me or communicate with us? How will we handle it all?

I know that we all feel overwhelmed at times, whether or not we have a “special needs” child. I’ve had this overwhelmed feeling before and it always subsides eventually. As I write this, I no longer have that drowning feeling. I’ve reminded myself to take it one day at a time, to not worry about my house (it’ll be here to clean tomorrow), people will forgive me for unanswered emails or phone calls (the ones that love me anyway), and to give the future up to God. I can ponder all I want, but only God knows what the future holds. There’s that scripture that says don’t worry about tomorrow. I know that God will take care of us and when I remember that, I realize that there is no reason to feel like I am drowning.

So, here I am, trying to stay on my balance beam. I’m apt to fall again, but hopefully I can be quick to get back on the beam. Being realistic about Elijah’s future (realizing that he’s going to have ongoing difficulties in his life) while remaining optimistic for him (not setting any limits as to what and who he can be) is exactly where I want to be. I’m not drowning, I’m swimming. I just wish it felt less like treading water sometimes.

***As a side note, it’s really hard for me to open myself up like this. I share because I do realize that we all have these feelings at times. For some reason, it’s difficult to share the negative feelings. I share because I want to be honest and real. Dealing with Elijah’s diagnoses is an ongoing process. Sometimes I’m completely okay with it. I remember how far he has come and I’m so thankful. And then other days I have to admit that I’m frustrated. My son’s life isn’t how I expected it to be or dreamed that it might be. Grief is an ongoing process, but sometimes it’s hard to share the journey. ***

Tweet

I Didn’t Know…

I didn’t know how much joy watching Elijah crawl would bring me. I could speculate, but I just couldn’t imagine it. He cruises around exploring his world as if he’d been doing it his entire life. He’s learning to touch the walls and feel and learn about the world around him. It’s amazing.

It makes me recall something I saw on TV when Elijah was still quite small. I was flipping through the channels and I stopped momentarily on a reality show. I’m not even sure what the show was and I honestly only watched it for a few moments. The show featured a baby and I watched with amazement at how easily she moved, gracefully shifting herself from the floor to a sitting position with ease and then taking a few crawling steps.

“Oh,” the mom said. “She’s never done that before.” I sat there in front of my TV in shock. Is that how parents react to their child’s first crawling steps? I wondered. No accolades? No excitement?

I couldn’t watch it any longer and so I turned the channel. At that point, I didn’t know if my son would ever crawl and I was disgusted by the nonchalant attitude. Isn’t it a miracle when any child learns a new skill –especially when it’s something as profound as crawling?

As I watch Elijah, I’m filled with amazement over the things he can do and I try to ignore the things he cannot. I’ve already become accustomed to some of the things he can do – sitting, transitioning…and I see myself having the same reaction as the mom on that TV show I saw long ago. “Oh, yep…he has gotten himself to sitting again.” I’m still amazed at his crawling skills, but at some point I suppose I’ll look at him and think, “Oh, there he goes again” with a nonchalant attitude. But, I don’t want to forget. I don’t want to forget all he has accomplished and the things he has overcome. I don’t want to forget that my son might have never gagged, cried, sat, or crawled. I don’t want to forget the parents who are still waiting for those things. I don’t want to forget and I hope I never do.

Tweet

Famous Boy – Elijah is Featured in Another Newspaper Article!

Today Elijah was featured in the Leader Telegram, a newspaper published close to our hometown. We’re so excited that Elijah is getting the exposure and that people will be hearing more about HBOT through his story. We are convinced (and it seems so are his therapists) that HBOT has helped Elijah. Simply too many things have changed since he received the therapy. If you’d like to read the news story, click here.

This is the photo they used in the article, Eliah in the HBOT chamber with daddy

I’m starting to get excited about the next round of HBOT as I’m looking forward to see what other changes may occur. What I ache for the most is improvement in his speech (i.e. any speech at all) and I wonder if perhaps that will be the next thing to come. He’s been using his voice more, experimenting with it. He likes to babble once in awhile, which is so exciting. After dinner he often says, “Gah-gah-gah-gah-gug” I think he’s trying to say, “Thanks for the grub, mom.” :)

Both articles about Elijah were very well-written. We feel very grateful and very blessed that he’s been in two newspaper articles in just one week! How thrilling! I don’t even know how to begin to express my gratitude to everyone who has prayed for and taken a vested interest in our little man. God’s involvement in Elijah’s life is undeniable. Since I don’t think I can ever say it enough: Thanks for everything. His “Elijah fans” are indispensible.

This is a recent photo of Elijah in his walker and me (aka his mommy)

Tweet

Words

I love words…well, most of the time.

I don’t watch TV all that often anymore and it seems whenever I do someone says something that gets my blood boiling. I’m thinking of one word in particular (I hear someone say it almost every time I watch a movie or turn on the TV)…

It’s seriously hard for me to say the word and since writing is also my voice, it’s honestly hard for me to even type it...You’ve all heard it a million times before. Some of you get just as angry as me when you hear it. Some of you probably use it on a regular basis, not quite understanding the pain it inflicts on parts of our society. Some of you don’t even know that it’s offensive. Have you guessed it yet?

It’s the “r-word.” Some of you are probably still thinking, “What r-word?”

Retard. There, I said it. I hate that word. Yes, I know that hate is a strong word. If there was something stronger, I’d use that. I abhor, despise, and detest that word. There, I think those words are strong enough.

Fortunately, I grew up in a household where the r-word was not allowed. To me and many others, the r-word is a swear word. I was taught that the r-word should never be uttered in reference to anyone or anything. I was taught it was hurtful. Am I perfect in my speech? Absolutely not (but more on my shortcomings later…).

Some of you may think I am overreacting, that I’m a policeman for the politically correct. (Um, I just called myself a “policeman” and that didn’t bother me). Some of you are saying, “What’s the harm?” or “It’s just a word, and besides it sounds funny.”

I’m not going to start trying to have words outlawed. I’m simply pleading with anyone who reads this to be extremely careful about the words you use. Do you know their history and where they come from? Are you inadvertently hurting someone with your speech? The r-word has an extensive history behind it and is never used in a positive manner. People with cognitive disabilities have been discriminated against – even killed – for simply being alive. Don’t get me started on the newest form of discrimination – abortion of those who might have a disability. When you call your friend a retard because they did something stupid, you’re disrespecting each and every person who has an intellectual disability.

In the past, I would have thought nothing of the words “pinhead”, “spaz”, or “spastic”…now those words stab me in my heart because I realize that those words are making fun of my son’s diagnoses. Sticks and stones may break bones, but the childhood rhyme isn’t quite accurate…words do hurt. We can ignore them, yes, but they still sting.

My Shortcomings
I’m not perfect and I know that I’ve said things I wish I hadn’t. I’m ashamed to say, I’ve even said things since Elijah was born!

Case in point…I remember almost saying the word “spaz” a few months back in reference to myself. I was about to say it when I thought, “Wait a minute…Spaz sounds an awful lot like spastic…maybe I ought to look into that.” Sure enough, a short internet search later and I discovered that Spaz was short for spastic. The tightness in Elijah’s muscles as a result of his spasticity is something he has to deal with on a daily basis. How can I describe myself in those terms and make light of his situation (and the situation of many others)?

More recently, I’ve found myself saying something else. As you all know, Elijah has developed temper tantrums. The words “he had a fit” have come out of my mouth in reference to his temper tantrums. When I’ve said it, I didn’t feel right. Another internet search and I found that indeed “having a fit” is another way of saying that someone had a seizure. It’s insulting and insensitive to make light of something as serious as a seizure. Elijah had seizures for two days straight and there are many families out there who have to deal with terrifying life-robbing “fits” each and every day.

I’m not sharing my shortcomings so that you can judge me. I’m sharing because I know that often we say things, not understanding the full implications and hurt behind them. I’ve done it too and no one is perfect. But when there are words that make fun of real medical conditions or disabilities and you use those words to describe yourself or your friends in a derogatory manner, it’s offensive.

I’m simply asking that anyone reading this will try to eliminate the r-word (and any other offensive words) from their vocabulary. It’s not funny to make fun of people with cognitive disabilities…and if that word comes out of your mouth that is exactly what you are doing…regardless of your intentions or who you are saying it to. I wouldn’t have intended to hurt anyone by saying “spaz” or “having a fit”, but that doesn’t change the fact that it is offensive.

I think it’s time we show some compassion for one another. Please pledge to not use the r-word and take the time to eliminate hurtful speech from your vocabulary.

I’ll try not to trip on the way down from my soapbox…Thanks for listening.

Tweet

Our Sixteen-Month-Old is Famous

Our little man is officially sixteen months old! And at just sixteen months, Elijah has made his newspaper debut in the Dunn County News, a newspaper from our hometown. (If you want to get technical, this would actually be the second time he’s been in the paper - as we also announced his birth).

It was pretty exciting to see the little guy’s picture and story in the newspaper. If you’re interested, you can read the story here. We feel quite grateful that they wrote this article about Elijah and included his life story in our hometown paper. [I did want to make one clarification to the story. It said that Elijah can say, “mama” and “dada” and unfortunately he is not able to say those two wonderful words yet. Believe me, if he were, I’d be shouting the news from the rooftop! While Elijah did say “mama” once, he has not said it since. I have to believe that someday we won’t be able to get him to shut-up…I smile just thinking of it!].

If you read the article, you may have noticed that Elijah now has a benefit fund…

A Benefit Fund
We recently set up a Benefit Fund for Elijah to help offset the cost of therapy. We are tentatively planning to do another round of HBOT for Elijah in March, possibly coupled with intensive OT, PT and Speech Therapy. HBOT isn’t covered by insurance and only part of the OT and PT would be. As Elijah’s parents, we want to do as much for Elijah as we possibly can while he is still so young and his brain is still forming. So, we are starting the process of asking for donations and thinking of fundraiser ideas. If you have any thoughts or would like to help out, please let us know. We’ve also created a flier to ask for donations, which you can see here. If you’re willing, please disperse this flier as you see fit (i.e. put it on bulletin boards, etc). If you have nothing to give but prayers, that’s the most important gift of all. Please ask for success in our fundraising efforts.

Enough announcements - this is what happened in Elijahland last week…

Clinic-Based Therapy
Elijah’s PT was laughing about the fact that she practically had to chase Elijah around the room in the walker this week. “I’m going to have to take a nap after this Elijah!” she said in her loud, enthusiastic voice. And when we were leaving her for the day, his PT said something to the effect of, “He’s doing great!” and “He’s amazing!” I’d certainly have to agree with her. :)
Elijah is never as cooperative working with his OT as he is with his PT. Since he works with his OT immediately after his PT, he’s probably a bit tired from already working so hard. But, part of the issue is that he’s so focused on his gross motor skills (i.e. crawling and walking) that he doesn’t care much about anything else.

I was really excited by something his OT said this week. She mentioned that she thinks cognitively, Elijah is beyond the things we’re trying to teach him. He gets bored, he gets frustrated, and he decides that he’d rather do something else, namely jumping or walking. That’s really exciting as it’s says great things about his developing brain.

School-Based Therapy
Our lovely school OT encouraged me to get Elijah age-appropriate toys. Again, that’s so exciting! I have to remind myself to never underestimate Elijah.

Dr. Nice Guy
We also saw our Physiatrist, Dr. Nice Guy, for a follow-up appointment last week. He seemed pleased with Elijah’s progress and didn’t have anything to recommend other than to “keep doing what we’re doing.” Hmm, sometimes I wonder why we even visit doctors in the first place. Still, it’s nice to have uneventful appointments.

The Crawling Wonder
Finally, to end this extremely long journal entry…Imagine this…I take Elijah into our bedroom and set him on the floor so I can get dressed. He immediately starts fussing, bouncing up and down and has a mini temper tantrum. So, the next thing I know, he takes off crawling towards the door. Even though I haven’t been able to get dressed yet, I start to laugh. “Where are you going Elijah?” I ask. For some reason he doesn’t answer :) and keeps on crawling, takes a left and crawls down the hallway. He makes it to the top of the stairs, after being distracted by the power outlet. (I, of course, monitor him the entire time to make sure he doesn’t take a tumble down the stairs or electrocute himself). For those of you who are unfamiliar with our house, that’d be a good 15 foot crawl – woohoo! He keeps improving. He is our little crawling wonder, our newspaper star, our sixteen month little boy (where’d our baby go?!), our favorite snuggle bug. And yep, we sure do love him. I hope you’ve enjoyed my "novel"…

Tweet

Elijah is an Explorer…

…and I’m his tour guide! He has improved so much in his crawling skills already…in just one day. He’s all over the place and I love it. He actually crawled over to his toy bin today and took some things out! I’m so proud, happy, and speechless…okay, maybe not speechless. :) The point is, we’ve been waiting for this for a really long time and now here it is. It’s kind of hard to believe and so thrilling. It hasn’t come easy, nor has it come naturally, but here he is…doing it! You know how I always say that “he’ll get there”? Well, in terms of crawling, He Got There!

I’ve been on cloud nine today, teary-eyed from happiness, and feeling so happy to watch Elijah move and play. This afternoon Elijah’s Early Intervention OT was here and she got teary-eyed too when Elijah showed off his new skill (I didn’t tell her he could do it, so it was a surprise). Needless to say, Elijah’s OT and teacher were very pleased with him today.

I can’t help but think back to the moment when we were told that Elijah had “severe brain damage.” We grieved and wondered what our little guy’s future would hold. If only I could have seen a glimpse of what he would be like today…I think I would’ve felt all right. All I know is…I’m never going to let anyone tell me that Elijah won’t be able to do something. Nor will I hold him back. He’s amazing, he’s a miracle, and who knows what the future holds.

If you weren’t convinced Elijah was crawling by yesterday’s videos, check out today's crawling video below. There s no denying it…our boy can move! Thanks, thanks, thanks for all the prayers!

Tweet

Yay! Woohoo! I See Baby-Proofing in our Future

Elijah is crawling! I think I can safely say that Elijah has officially started to crawl today. When something really interests him, he takes a few crawling steps, falls, gets up and takes a few more. It’s so exciting!

He did it for me this morning in pursuit of his switch toy, did it for his therapist today, and then did even more for daddy after work tonight. The more he practices, the better he’ll get at it.

Yay! Our little guy is mobile! Hallelujah!

Tweet

Thanks

Second Thanksgiving Already?
Elijah had a fantastic second Thanksgiving. This year he actually got to eat some of the food. Let’s see, Elijah doesn’t like cranberries or stuffing or turkey or…hmm, he didn’t really like any of it. I’m not sure if it was because he was tired, but he just didn’t want to eat any of the Thanksgiving food. Later, for supper, we gave him pureed leftovers of potatoes and turkey. I thought he’d like it since he likes potatoes, but he didn’t want anything to do with it. So, we put some pasta sauce in the mixture and he ate it all up. That’s my boy…I love Italian food too! Wait a minute…I also love Thanksgiving food...

The Dietician
The trip to the dietician last week proved to be helpful. She gave us a lot of suggestions and ideas as to how we can get Elijah to start eating more table foods… as well as things we can substitute for foods he can’t eat because of his allergies.

I got the idea to put the pasta sauce in the potatoes because the dietician said sometimes little ones want to have a lot of flavor in their food. Hmm, it’s not what I would have thought because baby food is so flavorless. And little Elijah loves his baby food. So, slowly, but surely, we’re trying to introduce Elijah to more and more flavors and textures. He’s not too sure about it as he’d rather suck down his easy to eat baby food, but we’re getting there. He doesn’t particularly like to chew, so we’ll keep working on that. He is, however, becoming better and better at drinking from a cup. It’s another one of those things that I feel like he’ll eventually get the hang of, he just needs practice. “He’ll get there”, as I like to say.

Oh, for those of you anxiously awaiting a nickname for our dietician (yeah right!) I decided not to give her one. It doesn’t sound like we’ll be going to her very often (if ever) and I didn’t want to put the effort into coming up with a nickname. All I could come up with was Ms. Food and I didn’t think that was very creative anyway.

This Boy Likes Weddings
Elijah attended the fourth wedding of his life the day after Thanksgiving. His mom and dad’s friend Jen got married to an awesome fellow named Bill. Elijah was a good boy and enjoyed dancing to “Play That Funky Music White Boy” despite the fact that he was a bit sleep deprived. The wedding was beautiful and we were really thankful we could make it (Congrats you two!)

Home Again, Home Again
So, it’s back to the daily grind after our extended weekend. I hope you all had a wonderful Thanksgiving. We sure did. We have so much for which to be thankful. God has been good to us. Thanks to all of you!

PS
Check out Elijah’s Photobucket site. I’ve been in the process of reorganizing and uploading new photos and videos. I’ve organized it by putting folders on the left-hand side of the screen. Those folders have subfolders for each month, so remember to always check for subfolders. (Check for sub-subfolders too). Anyway, I’m not done or up-to-date yet, but check it out anyway. There’s new stuff in the 2nd Year Videos folder and 1st Year Videos folder. I’ve been working really hard on getting his videos edited and uploaded, so expect new stuff on his site soon. For the newest photos, check out the 2nd Year 2008-2009 folder. (I hope this isn’t too confusing. If you have any problems finding stuff, let me know).

PPS
Congrats to Elijah’s Uncle Andy and soon-to-be-Auntie Karen, who just got engaged this weekend.
A late congrats to Elijah’s Uncle Dan and Aunt Darlene, who will be giving Elijah a cousin next year.
And a later congrats to Elijah’s “Uncle” Ross and “Aunt” Shae, who will also be giving Elijah a cousin next year.
Lots of exciting additions to Elijah’s Life next year and he can’t wait!

Tweet