Hey guys! Sorry it's been awhile, but it's hard for my to post when I'm in a "funk," which I have pretty much been staying in lately. And also, the fact that not much has changed, or gotten better, for that matter. Things are rough, I'm not going to sugar coat it. And as rough as I think things are right now, I know in the back of my mind that this is just the beginning of the "hard times." My little fighter isn't ready to give up. His strength is a lot of times incomprehensible. I just don't get it. I don't get how he keeps going.
This past week, I had 3 ulcers in my mouth... and the pain it caused me to eat or brush my teeth was so bad that it brought tears to my eyes almost every day to think about how much pain Tripp is in- and that's only his mouth. His mouth is terrible- sores everywhere, gums swollen and look completely raw, his teeth shifting because of tissue from other parts of his mouth/gums fusing in between his teeth. Not even mentioning the fact that he can't brush them or clean his mouth other than swabbing it with some disgusting antibiotic/steroid numbing mouthwash (which works for not even 5 minutes).
His days consist of going from the bed, to the rocking chair, then back to bed. No standing up to play. We are lucky and happy to get him to smile or even want his music on in the rocker now. He's miserable. I have to pick him up out of the bed in the morning unwillingly because he knows that when he gets up, he has to get his diaper changed. Then at night when it's time for bed, he doesn't want to go back in bed because he knows he has to be changed again. And bath days, oh man, me, Grammy and Tripp ALL have anxiety. I think now he spends EVERY day just "wondering" if it's bath day and having anxiety regardless thinking that we are going to bathe him. Sometimes we forget that he's 2 1/2 years old and that his brain is in tact 110%. He knows when we are "whispering" about it, or trying to spell the word "bath." We even renamed it, but he figured that out, too. He's just too smart. He can sense my anxiety, too, I think. I DREAD bath time for him. Sometimes I pray that he doesn't live to have to be put through another bath. There is no way to explain the feeling of wishing God would take your child home rather than him suffer the way he is on Earth. It's a terrible, guilty feeling. I go through so many emotions a day that it's not even funny.
His little bottom and his legs just look bad. They are draining and itching. I'm sure he's covered in pseudomonas and yeast, just as he's always been. I tried a new bandage called Hydrofera Blue recently (courtesy of Ms. Leslie Radar, of course:) and his sores started looking A LOT better. I used it for about 3 baths in a row, and then once his sores started looking better and not having a lot of drainage, I couldn't keep the bandages moist enough and they stuck to his sores, ripping open A LOT of new skin. You EB moms out there know this feeling- there's NOTHING worse than trying something new and causing more harm than good. So needless to say, I haven't used this bandage since then, even though I think it did some good, it did more harm that one time than good.
This morning when I got him up to change him, the tip of his little penis had a big blister on it :(
This instantly made me sick to my stomach. This area was the ONLY area that we have never had problems with. Tripp wasn't circumcised at birth (thank GOD), so that has helped him in not having issues with that area. That has been just a small blessing, I guess. But today when I saw that, I just wanted to cry. I don't know how much more he can take. Seriously, I don't know how he has the strength to wake up in the morning. But I'm sure thankful and so blessed each day that he does.
He is my HERO.
I want to share this poem that my sweet friend, Christie, shared with me.
Thank you, John Alessi, for restoring my faith when I feel like I'm literally hanging on by a thread.
This is absolutely beautiful.
The Brave Little Soul
By: John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.
In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.
Priorities became properly aligned.
People gave from their hearts.
Those that were always too busy found time.
Many began new spiritual journeys, some regained lost faith - many came back to God.
Parents hugged their children tighter.
Friends and family grew closer.
Old friends got together and new friendships were made.
Distant family reunited, and every family spent more time together.
Everyone prayed.
Peace and love reigned.
Lives changed forever.
It was good.
The world was a better place.
The miracle had happened.
God was pleased.
To me, there is NOTHING that describes Tripp's journey better than this poem.
It has helped me tremendously this past week in trying to understand why this is happening.
And trying to comprehend the pain that my baby is in.
I'm trusting that Tripp and God have this "deal" and that Tripp will let God know when he's had enough and when he's finished his time here.
What a brave, brave little soul.
My brave little soul.
I'm so sad, so proud, so angry, so confused, and yet so blessed.
I know it's just going to take time and only the time will tell.
Time flies when you're having fun, but it doesn't fly when your precious child is suffering.
I just want him comfortable. I'm trying to hard on my own to make him that way, but I know that he will never be truly comfortable until he is sitting on the lap of Jesus.
*photo by Christie Zink of Elan Images Photography
**P.S. Please don't forget to check out Tripp's Trees in the post below!
Love,
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