"Awe look at your kid running, that's so awesome" Why doesn't mine run?
"Awe she/he just said the cutest thing" I have to decode what my son says.
"Wow she/he ate all their food!! And wants seconds, sure sweetie here you go" I'm lucky if my kid take 3/4 bites of something.
Yep knee jerk reaction. I just couldn't/can't help it. Yea I understand the difference between a "normal healthy" child and well mine. He's in a category all by himself. Atleast that's how I felt. There were few others in the category with him but none close and none we've met. Two, maybe three, at max 6 kids.
Other tube fed, cdh survivor or medically fragile child I've followed either doesn't have their tubie long, doesn't eat at all by mouth because they're basically paralyzed or have severe gastroparesis, or eat their hearts out and still don't gain weight (meaning eat everything in sight).
I really thought Liam would be in the 'eat their hearts out and still not gain weight" category. Really did. Nope. Instead my son eats when the mood strikes and doesn't give a hoot to eat on a sched. He's also extremely picky. Yet this kid will stick anything and everything that is not food in his mouth. Yea not fun to wrestle non food items out of a child mouth who have a mouth full of teeth and knows just how to use them!!
Anyhow I'm getting off topic and not saying what I really wanted to say.
There were times people would post about how their child got their feeding tube removed and how happy they were. The same people would barely post about their tubie journey or give insight to just how they got their once none eating child to actually eat. It's quiet frustrating. Here I am trying to spread awareness about all thing CDH related including and not limited to feeding tubes.
But still. I congratulated them and on some level was very happy for them and especially the child. Woo hoo tube free!! Amazing. And it is. It really really is. Honestly. But on some sub-level I was dismayed. Disappointed that after all my hard work my son still has his tube and still refuses to eat more often than not. And everything revolves around spaghetti, noodles, Doritos and French fries. Oh and at times fruit snacks and maybe once or twice a month dry cereal.
But even offering the go to fave foods he still refuses more often than not. And do I really want him to live off those items? Not really. There's not enough nutritional value.
So you can imagine my frustration (or I hope you can). I've resigned myself to tube feeds, sticky stinky formula, getting up for feeds through the night, having to put the tube in when it comes out, tube infections and fight over food. Yea I'm resigned. It is what it is.
But today. Today I had a complete different reaction. It was a knee jerk. There were no "why won't my kid do that?" Or anything else. My reaction was pure, unfiltered happiness for someone else's child's accomplishments. I was truely happy for this little boy. And for his momma.
I was actually taken back by my reaction of pure simple happiness and joy. This was the first time I didn't think about how I wish it were me posting this and not someone else. Nope. Not once. And do you know how that made me feel? AMAZING!
Truely utterly amazing lifted up in a cloud of happiness.
I was truly happy for someone else's bliss and improvements.
It felt like a weight being lifted off my chest. Some people don't realize how very stressful it is to constantly worry about your child's health and improvements. Most people never have a reason to have to constantly worry. It takes a toll on your body and your mind.
It can drive you to the breaking point. To a point where your not sure you can ever return from. And to never be 100% happy for someone else without thinking "why not me" or "why not my kid". It's draining.
But today I've reached a new platou. Life looks a bit brighter. The sun is shining a bit brighter. Everything has a bit more color to it. I can breathe a bit deeper and smile a guinuine smile that hardly makes an appearance. Yes this is a great day.
I know a lot of people who if the read this would probably be offended by the fact that they never knew I wasn't completely guinuine when I said I was happy for them. It's not that I wasn't guinuine because I was, but it was tainted by...by jealously I guess. Or maybe it was despair at my own situation I don't know. But they would take this wrong. Twist the words and manipulate it until it's ugly.
No I was happy for you but yes it was tainted but the tainted was more for my life than yours. Yes I was happy for you bit I wished mine could be doing as well. For a girl whose lived her 31 years on this world filled with more misery than anyone could ever guess, you have to admit that if I can still feel happiness for someone else after all my misery that that's HUGE. Maybe in a way I've been overly happy and overly giving to others to maybe make up for that. I don't know but that's for another post.
When I saw this picture of a little boy whom I've been following for years now, eating corn, I was overcome with joy. Pure untainted joy. And when his momma told me all he had eatin for dinner my jaw dropped and instantly I wanted to reach into the computer and hug this little boy and his momma.
This little boy is a CDH survivor and has basically traveled the same exact road Liam had. I bonded with this momma over it. I gave advice where I had the wisdom to share. I prayed for this little boy and his momma more than I can count. I sent his big sisters hair bows.
When I saw this post about this little boy eating I thought:
Way to go momma!! Wait to go P!! You did it!!
Pure unedited, untainted joy!! That felt better than anything.
You learn so much by following others journeys through life weather it's a medical journey or not. But I believe you learn more following those who've had to fight for every breathe they take. They see live differently and are unashamed in sharing how they feel about what they've been through because it's made them who they are today. They appreciate life more. Same can be said for the families of these people. Some cases touch my heart more than other.
In the case of baby P, his story just captured my heart. Not just because he and Liam have the same birth defect or that their journys have been so similar it borders on scary. No two CDH kids are alike. Each one is different and follows his or her own path. There are probably none two as alike as Liam and P. And that fact did help to capture my heart and make me feel close to his momma. But when I looked at his face and into his eyes I felt I could see a peice of his soul. Same as with Liam. Some babies are like old souls and their eyes shine with just love, knowledge and wisdom. Their eyes seem to see into your very soul.
When I looked into baby P's eyes (via pictures) I felt this. Just as I had with Liam. It's like theres an instant bond and you feel connected to these kids. P reminded me of Liam in so many ways I just felt connected to him and therefor his momma. And like me, how I love Liam, P's momma just loves P to peices and wants the best for him. How could you deny a love like that?
You could tell me a thousand times my son ate a whole meal and I wouldn't believe it unless I saw it. When momma posted a picture of baby P eating corn on the Cobb and mowing down, I could just see the utter joy in this babies eyes. I could (or imagine) him in his cloud of happiness just chewing away. I instantly light up like fireworks. My brain pumped out so much serotonin it was crazy!
This picture below...this picture makes me feel total untainted joy. And for that I am so greatfull. Because of this I have reached a new platou in this journey where I no longer think "why not my son?".
Why not my son? Because it wasn't his time. It was P's and that's something we can rejoice and celebrate.
I say completely overjoyed and untainted:
CONGRATS BABY P!! YOU DID IT!! YOUR AMAZING!!
And momma your doing an amazing job!! I know how hard the journey is to get your tubie to eat but you overcame than with hard work and dilligance. You never gave up. That's inspiring to all of us other moms working on getting our tubie to eat a substantial, or even unsubstantial amounts of food. Think about it for a minute. YOU did this. Your hard work is the reason he's eating. You may have a few stains on your shirt but you made it through the food fight. This is the start of a new chapter for you both! You deserve a round of applause 👏, a high five ✋, two thumbs up 👍👍...or maybe a cup of coffee ☕️.
I don't normally go out on a limb and do this kind of post but you inspired me. I know I helped you through some rough times and you helped me through some rough times, but when I was starting to feel like giving up you inspired me to keep at it. You also helped me grow as a person just being able to follow P's journey. For that I am so thankful. Because of you I can now be joyous for others and untainted.
You go momma!
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