amommysjoy: A miracle himself.

This weekend was kind of sad for me. I have "those days" every now and then when reality sets in and I actually have time to stop and think. Either about what the future holds or the fact that Tripp's current life is so incredibly different than a normal (or should I say "healthy") 2 year old's is. It makes me so sad that I can't take him places or do things with him that healthy kids can do. I mean, I can't even pick him up and hold him without him getting anxiety because he thinks he's getting a bath. Then when I go somewhere... like church yesterday and see all of the kids- it makes me sad. I'm normally okay about it and can deal with it, but sometimes it just hits me like a ton of bricks. Especially when I see kids who were born the same time as Tripp, whose Mommies were pregnant at the same time I was. That's a hard thing to see.

I realize that people who have healthy kids don't really have a chance or a reason to stop and think about how much of a blessing it is for them to be healthy. But being on the other end, I swear I think about it every single day. Somedays I can face reality and other times it slaps me in the face. I would give anything in this world for Tripp to be a normal, healthy boy and be able to run around outside, go get a snowball, ride his bike, eat cheerios, brush his teeth, or sleep cuddled up next to me without machines on or worrying about getting a blister. Sometimes I just look at him, and I try to picture what he would look like if he didn't have this horrible disease... no sores, his eyes perfect, fingernails, toenails, little chunky thighs... and then I have to take myself back to the reasoning that God has a plan for him. And it's not right for me to picture what he would be like "EB free," because he was never meant to be "EB free." He wasn't meant to have fingernails and toenails. He wasn't meant to be able to speak like other kids. He was put here to touch and change lives... even if it's one person at a time. And I see what he's done just in our community. I see the people that have come together to help us, the people who have come into our lives that we otherwise would have never met, and the sacrifices people are making to help make our lives just a little bit easier.

It's so horrible when you actually take the time to stop and think about what's going on and how much Tripp is suffering each day (and thinking about how much he's suffering and actually SEEING him suffer is totally different)- but I just don't have any other option than to focus on the good that is coming out of this. I mean, what does focusing on the bad do? It leaves me sad and depressed and unable to be happy for Tripp. And that's not an option (But like I said, I'm certainly allowed my one meltdown a month or so, I think). So once again, I want to SINCERELY THANK everyone who has been so supportive- your kind words, emails, letters, etc. You may not think that it's doing anything. But each word gives me just another push forward... literally. I'm so blessed to have the support that I do. And I know I always say that... but it's SO SO true. I can't imagine going through this without so many people, who have played so many different roles in my life.

I AM SO GRATEFUL. Seriously, I am.

On another note, Tripp's beautiful, wonderful ENT Dr. Rodriguez made a house call on Thursday. She said she had been thinking about us and had an idea that might help Tripp's breathing. So she brought over a bigger sized trach (which is still not the size that a normal 2 year old would wear), but it at least gives him a larger hole to breathe out of. It's a 3.5 in diameter instead of a 3.0. And it does seem like he is breathing much better. So far none of the noisy, wheezing breathing. The only thing is that my suction catheters are just a tad too small and don't really "do the job" like they did with the smaller trach. But he is getting to the point where he can cough pretty good on his own, so he helps out a little. Except when he's sleeping and laying down.

Anyway, I have a few more videos that I took after I posted all the others. He's always been a dancer and a booty-shaker, but in the past couple of days, he's been REALLY getting down. Like throwing his arms around to the tune of the music. I swear there is nothing in the world that can melt your heart more than seeing this kid SO happy and playful with all he goes through.

I keep saying that I'm waiting for a miracle...

but he's already a little miracle himself.

Check this one out.. it's my favorite to date. Listen close to his movements and the words in the song. Also, he's "clicking" with his tongue as he's dancing ever so cute:)

This is his little "play area." (I want to get rid of the big green and red tub, but he loves it cause it makes sounds when he bangs) But anyway, he walks all the way down to "spin" the ABC wheel, then walks all the way back to his drum and beats to the tune of it.

Dancing to 1, 2, 3, 4 on Elmo. I can't catch him all of the good times that he dances and shakes to the exact tune, but I think I caught a little of it. I think in this one if you listen close, he's "clicking" the tune with his tongue, too.