Thursday, December 22, 2011

Merry CHRISTmas...

...from our family to yours

"Shall we indeed accept good from God and not accept adversity?" 
- Job 2:10


Monday, December 19, 2011

Matthew 12:36-37

They had a beautiful article on this morning and I want to thank everyone who has left positive comments and words of encouragement to us.  It is TRULY appreciated.  And I know those of you who have followed our story and know what's REALLY going on, already KNOW how much I appreciate it.  You guys are what keep me going on a daily basis. 

But I guess trying to spread awareness about your son's extremely rare condition nationally has it's downfalls, too.  You get people with all types of opinions, and that's okay.  But there will not be people leaving comments on our story like that without getting MY opinion back.   

So for those of you who are not educated on our situation, let me begin... 

Tripp's life has not always been like it is today.  Please, I encourage you to actually read this blog- look at the pictures on the top link, look at his videos.  He has not been confined to the rocking chair, blind and in pain for 2 1/2 years.  He has been given the best life possible in his situation.  And I can say that because I have put my heart and soul into making sure he has.  He is the best kid I know- he has the most radiant personality I've ever seen.  Before he was confined to the rocker, he would play every day, he could drum to the tune of a song like NO OTHER.  He would smile, laugh, and melt your heart.  He has changed my life forever and the lives of the people who love him forever- just by being in this world for 2 years.  

And the people who made comments about me doing this for publicity?  Think about what you are saying... You are saying that I would rather see my child (MY CHILD- that I dreamed about, that I LOVE and gave birth to) in pain every day by CHOICE?  Because I want to be in the public?  Really?  I'm so sorry that you actually think a human being would do that.  
And as far as "putting him out of his misery"... ALL I'm asking is that you actually read and educate yourself on a situation before you cast judgement. 

 This has been an extremely gradual process.  Only within the past few months, has Tripp gotten to the point where he doesn't feel well enough to play.  And only NOW, for the first time in 2 1/2 years am I having to question his quality of life.  And I am doing everything in my power to make him comfortable for the rest of his time here.  
So please, please.... know what you're talking about before you make a comment about someone's child and someone's family who has gone through more in 2 years than you could imagine. 

I'm trying to understand your comments, I really am.  
But I'm just not sure what people think I am supposed to do?  He is BREATHING on his OWN.  He does not have a tube that he is breathing from that I can just pull the plug on. 
Yes, I admit, if he was breathing by means of a ventilator and was suffering this way, then of course, it would be about me making a decision to "let him go."  But this is NOT THE CASE. 
I cannot starve my child- who in their right mind could do that? 
I don't CHOOSE to torture him through baths every other day- I HAVE TO CLEAN MY CHILD.  It's not a choice.  What I CHOOSE to do, is sedate him so that baths are easier on him.  That is my only option.  

Sometimes I wonder if people really even believe what they write?  Like they think I would choose this life over my son's health.  Like they think I enjoy giving up every second of my life to have to fight for my child's life. Who would choose this life?  Certainly not Tripp, not me, or any of us- knowing what it would entail.  But we have stepped up and done what needed to be done to give my son the BEST care possible.   
And I'm sorry for those of you that can't understand that.  
And I am SO THANKFUL for the people who DO understand that.

And as far as the comments about having more children or for me to "stop breeding," I don't know where these things are coming from, but let me educate you AGAIN-
Yes, this was a genetic disorder.  No, my ex-husband and I did not know that we had a 1 in 4 chance of having a baby with EB- there is no test for it before the baby is born. 
But if or when I do remarry, my future husband will be tested to be certain that he does not carry this same mutation (that is 1 in 2 million) so that we can be sure that this doesn't happen again.  So as far as being irresponsible in ever wanting to have more kids in the future... AGAIN, please educate yourselves and do not make things up because you want to believe them.  There is no way that I would selfishly subject another child knowingly to this disease.  Come on people... It's ridiculous that I have to clear those types of things up.

I did not contact ABC to get this article published.  They contacted me.  And I appreciate it so much.  I, along with many others, thought it would be a great way to spread awareness about these precious kids and adults who suffer from a disease that is so rare that no one knows about.  
It is hard and hurtful to be faulted and judged for wanting to do everything you are capable of to end a disease so that NO ONE ever has to go through this.
So I hope that even through the nasty comments, that this will bring MUCH needed awareness about EB and eventually lead to a cure one day SOON.  And I hope that the people who chose to comment before reading our story will take the time to read and learn and educate themselves...
But most importantly, I hope they will get to know my little man's personality through pictures, video and my words- and know that he is nothing but a normal, innocent child who was given an unimaginable cross to bear, so that other's lives (like mine) would be changed forever. 

"I tell you, on the day of judgment people will give account for every careless word they speak, for by your words you will be justified, and by your words you will be condemned.”
—Matthew 12: 36-37

Again, thank you with all my heart to those of you who support us, support my decisions, and love my son.  
Thank you for understanding and learning and educating yourself about EB.

And THANK YOU, ABC News for featuring our story and helping us to spread the word!   

I love you, my sweet little man... and no one knows your heart like Mommy.  And NO ONE knows when you are ready to leave this Earth, except God.  Thank you for blessing my life beyond words. 
I will be right by your side, doing whatever I have to do to make you comfortable for as long as it takes.  You are my WORLD. 


Sunday, December 11, 2011

The Brave Little Soul...

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!


Trimming Tripp's Tree(s)

Well, everyone was right.  We needed another tree.  And then another tree.  And now the third one is full, so stay tuned... My mom was didn't even get her "big" tree down this year.  But the year isn't over yet:)
Thank you SO much to all of you who sent ornaments.  It is truly amazing to see them coming in from all over the world!  I never thought we would get such a large response!  I will treasure each and every one of these forever.  
This is going to be a REALLY hard Christmas, to say the least.  
And you guys are making it just a little bit easier, by being so incredibly thoughtful:) 
We are literally surrounded by all of your love every day now! 

Tree #1

Tree #2

Tree #3