Tripp man is still the Diflucan for yeast, and also now on Clindamycin for his mouth. Though I just think his mouth is beyond help because it doesn't seem to be working. Within the past few days, he's had some trouble with his trach. Not yet sure if it's a sore underneath the trach and a swollen airway again, or if it's just a cold or resp. infection with thick secretions. But we are back on breathing treatments and back on the high dose of steriods. He's just a TROOPER. Plain and simple. I don't know how else to put it. It is beyond my understanding how this little boy can endure all that he does. He's nothing short of a little saint.
So my super fabulous sister bought and mailed me a Kindle (just becuase) this week. I thought that was pretty darn sweet of her. Now, if you know me... you know that I have read approximately TWO books in my entire life. One that I read last week- "Heaven is For Real" and probably another one I've read during high school that I had to read. That's about it. I have always hated to read. But now, You can practically call Ms. Bookworm. I joked with my mom today about not hearing something she said because I must have been "caught up in my book." The joke in the house is always that I'm the "less intelligent" of the kids... just because I was always MUCH more interested in my "social life" than school or any type of learning. So for me to even want to read a book is a big deal... haha. But I LOVE my new Kindle. THANKS SIS. You're the best! And after reading the book "Heaven is For Real" and the one I'm currently reading "The Boy that went to Heaven," I have A LOT to say. So watch out faithful blog readers... I am FULL of things to blog about now.
So first of all, if you haven't read the book "Heaven is For Real," get up, get dressed, go get it at the bookstore or buy it on your Kindle (iBooks, Nook, whatever) and READ IT!! Oh my goodness, it is amazing... and I can't stop thinking about it. I don't only love it because I have a special boy who could possibly beat me in seeing Jesus, but because it gave me a whole new perspective of what lies ahead for all of us. Of course I believed in heaven before... and of course I've "learned in school" and read in the Bible about what heaven might be like. But to hear what Jesus is like and what heaven is like coming from the mouth of a five year old- puts a whole new perspective on things for me.
God knows exactly what our lives are going to entail before we are even born. I truly believe that. God knew that we were going to have Tripp and that he was going to have EB. He also knew that Tripp would touch countless lives of total strangers. He also knew that we would have the greatest support system that there is. He knew that placing Tripp into my hands was the right choice, not only because I would devot my life to him, but also that we have parents and family that would devot their lives to him. And not stopping there- we have a whole community who has stepped up and who is showing us nothing but support and love and the true meaning of "doing for others." God knew ALL of this. That is exactly what I was missing in my life before Tripp was born- FAITH and TRUST in God. Yes, I would pray... but I was praying for things beyond my control and praying the totally wrong way.
Every page in these two books screams at me: "Tripp was chosen." "You were chosen." "Have faith that God knows exactly what he's doing." "And TRUST that miracles DO HAPPEN." And even more now, I know that whatever happens was already in God's Will for us and for Tripp. He already knows what's going to happen. These two books stress the power of support from the community- I think that's another reason I can relate so well. They talk about the power of prayer and the importance of "prayer in numbers." I know that Tripp has touched lives across the world and I know that he has people all over the world who are praying for him and following our story. So we can't give up now.
As each day in Tripp's life gets a little worse and he wakes up with new sores and new issues... I know that I need to focus on the positive of this whole situation. But as a mother, that is getting harder and harder as I watch my son slipping further away. There is no words to explain the feeling of gradually (but quickly) watching your son go blind right before your eyes- and there is nothing you can do about it. Or witnessing the PAIN he is in when he wakes up in the morning or during a bath. But I try to keep focus- and what helps me the most is knowing that not only does God know what He's doing with our lives, but He also sent HIS only son to Earth, to be tortured in the worst way possible- crucified on a cross- and to die for OUR sins. And Jesus' Mother watched as her only son suffered tremendously, was ridiculed, and was hung on the cross. She knew that He would die and I'm almost certain that no matter waht, that wasn't easy for her- but she also knew that He would rise again on the 3rd day and bring salvation to the entire world. Is that what got her through it? It was our fault (through Adam and Eve) that the world was condemed. And God gave us a second chance when he brought his son back to Earth. When Jesus was hanging on the cross, took his last sip of wine to close the last Passover, and died- and when He did, He reopened the doors of Heaven for us. And now it's our choice once AGAIN to follow the right path to get there. And God knows in this world now, it's NOT easy.
I'm certainly not a Holy Roller, but I'm trying to get there. That's a name that I wouldn't mind having... I just need a little help. And say what you will... but when you're put in a situation like mine- you have to choose one of two paths: Following and trusting God or turning against Him in anger. And in my mind, the first choice is the only way to get through in our situation. All I know is that having Tripp, and him having EB, has totally and completely changed my life (of course). But in a way that I just can't explain. I am STARVING to know God and to learn everything that I have been missing in my Catholic faith. And I am trying to find ways to let go of my anger and resentment toward other issues, but it seems like those issues just keep getting bigger and bigger. It's not an easy road... and it's not easy to find the time to devot myself to something other than Tripp.
Now don't get me wrong- I have other stressors in my life even besides Tripp that sometimes cause me to fall WAY off the deep end. And I'm slowly trying to work those things out to where they do not consume me entirely to the point where I lose focus in caring for Tripp. But my gosh, these issues seem to be getting bigger and bigger by the minute and testing me in every way possible. ** And just a little side-note to anyone who thinks that they might know ANYTHING about my other situation... I can assure you that you know NOTHING- no matter what anyone is telling you** I will be more than happy to share the truth with anyone who would like to hear it. I desperately need to hold on to my sanity by doing what's best for Tripp and I. Something that I should have been doing for a long time. I've been SO selfless in caring for Tripp, that I've forgotten about taking care of myself, too. And there's a difference in caring for yourself and being "selfish." Because God knows that being selfish doesn't get us very far in life.
I'm thankful to have a very successful business man in the community and probably one of the most devout Catholics I know, Mr. Mike Fulmer, helping me better understand my Catholic faith. He's turned it into something that has meaning... instead of something that was just a "routine" in my life. He told me something the other day that I really loved. He said that "as the father of his family, (he) accepts the role of teaching the faith the the people that (he) loves. The most important thing that (he) will do in his life is to provide them with the information they need to get to heaven." I think this is so important and I think that anyone who is a father, mother, or role model to someone should feel the same in passing on what your loved ones need to find their way to heaven. Mr. Mike has a teaching online called "The Fouth Cup." I've heard it a couple of times in person (along with many other Bible teachings) and it is just amazing. It is the explaination of the Eucharist and the Last Supper/Passover. This teaching has brought many non-Catholics and non-practicing Catholics back into the Catholic church. If you haven't heard of it or have never seen it, please take a look. I promise it will change your life (or at least make you think:) You can watch the whole presentation at:
And now I shall end with some more very deceiving pictures of my child, who will smile and play for me to snap pictures just so I can have some good ones to post here on the blog, and then go back to his rocking chair:)
This was a HUGE deal last night when he not only wanted to sit on Papa's lap,
but he was in the OTHER room! Go Tripp:)
OH, and Happy Belated Easter to ALL... The Easter Bunny was pretty good to Tripp, though he was no more interested in anything in these baskets as he is the man in the moon.