They had a beautiful article on ABCnews.com 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.
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.
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!
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!
"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
-1 Thessalonians 5:18
I am thankful that I am the Mommy of this angel on Earth.
I am thankful that God trusted me to care for Tripp the way he deserves to be cared for.
I am thankful that Tripp loves me back just as much as I love him.
I am thankful for everything he has taught me in his 2 1/2 years, that I otherwise would have never learned.
I am thankful for every. single. second. that I have had with him and WILL have with him.
I am thankful for my family- the best family a girl could ask for. Period.
I am thankful for my mother at my side 24/7, loving and helping me unconditionally.
I am thankful for the special people that God sent to me in the past year- the people who have made my life 100% better just by being in it.
I am thankful for my friends- new and old- who have been there for me no matter what.
I am thankful for all of our supporters- near and far- who lift us up and keep us "keeping on."
I am thankful that God sent his son to die on a cross- to save us from our sins, so that we can have eternal life with Him, making me CERTAIN of where Tripp is going when he leaves my arms. There is nothing more comforting.
I am thankful for the faith that I was raised in, for it helps me to better cope in my situation.
I am thankful for a roof over my head, food to eat, clothes to wear, and all of the frivolous things that I don't need, but have been blessed with anyway.
I really don't even know where to begin or where I really "left off." But I'll start off by being honest and saying that I've been a little secretive lately- but it's for good reasons. Trust me.
Let me start with the GCSF. I think I left you all a few posts back (I think in October) where I was giving him the Rocephin injections to try and get rid of his current infection so we could get his white blood cell count in a semi-normal range so that he could try the GCSF. I had told Dr. D that the only way I was going to try these injections was if everything was lined up with the GCSF so that if the blood work was good, that there would be absolutely no "window" of time for his count to go back up before we got to start this new drug. Well, about 4-5 Rocephin shots in (just FYI, those shots were horrible- something I will never do again), we drew his blood and his white count was in normal range (high-normal, but normal).
So, with the help of Tripp's amazingly wonderful pediatrician and our amazingly wonderful pharmacist, "Uncle Trea," I had the GCSF in my refrigerator that same day.
So I started the GCSF (Granulocyte - Colony Stimulating Factor), giving it subcutaneously (under the skin, into the "fat"). This drug is used mostly in chemotherapy patients to help stimulate the production of certain white blood cells. I won't go into detail about what this drug is doing for EB. Because honestly, I don't know enough about it- it didn't work in Tripp. But that doesn't mean it hasn't had good results in other kids or adults with EB. But Tripp has a lot going on... he's on constant steroids that we can't get him off of (we tried and were unsuccessful) and even though his counts were normal at that time, doesn't mean his infection was completely gone. And those were the two things that we were told could affect the results of this drug... but I had to try it anyway, to at least say that I tried.
So GCSF is a no for Tripp.
The next secret is kind of a big one. But in my defense, I didn't want to get anybody's hope's up.
After realizing that we had exhausted pretty much every option of making Tripp comfortable, I revisited the idea of the Bone Marrow Transplant. There has been a lot of people emailing me and posting asking me if I knew about the BMT. I've known about the transplants since they first started them about 2 years ago. I have followed many of the kid's journeys through these transplants. And when they first started, this just was not an option for Tripp- he was not yet sick enough and they were extremely dangerous and brutal in children under a year old. If you aren't familiar with the Bone Marrow transplants that they are doing in EB kids, I'll try and tell you briefly what they are about. The transplant is NOT a cure (at least not yet)... It is a chance for a better quality of life. It is brutal... the side effects of the chemotherapy are just horrendous. Reading about what those children went through (some of these precious kids not making it through the transplant) was heart breaking. I felt that bringing Tripp in for the transplant at that point was giving up and taking his life.
Well, at the point that we are at now, I felt like NOT trying the transplant would be like "giving up" and just watching him die in my arms in the rocking chair. And talking to the Ringgold's (who's daughter Bella went through the BMT last year and lost her precious life), I found out that the chemotherapy regimen was less "toxic" in the current BMTs that are going on. So, I called Dr. Tolar, one of the transplant doctors in Minneapolis, MN who is currently responsible for about 18 Bone Marrow transplants in EB kids up to date. We spoke briefly about what I needed to do to get an appointment with him ASAP. The appointment would just be us deciding if he would even be a candidate for the transplant. Dr. Tolar was absolutely amazing. Usually, Tripp would have to travel to the "initial" appointment, but being as sick as he is, there was no way I could have brought him to Minnesota twice. So he said that it was fine if I came without him.
Like leave him?
So, I worked HARD contacting all of Tripp's doctors and getting all of his charts faxed to Minnesota. I had to write a one page summary of Tripp's life (haha)... that turned into four pages. I had gather pictures of his wounds from birth until now and we had to draw blood for his HLA testing (marrow donor). All of that was sent to Dr. Tolar in Minnesota. Now we had to see when the earliest time was that I could get an appointment, being as he is out of town a lot. He fit us in within the week. November 18th at 11:30am.
So I booked the tickets right away. My boyfriend, Stephen, took the trip with me. I know, I know... now the secrets are really flowing, right? :) He has been by my and Tripp's side every day for quite some time now. Heaven-sent?? I think so. So, he and I left Thursday evening after bath and got back late on Friday night. My sister flew in town again to help my mom. Mrs. Pam (MeMe) was out of town for the week or she would have been here like she normally is every week.
The only tickets I could find with a week's notice worked out pretty well. There was no way we could pull it off in one day because our meeting with Dr. Tolar was planned on being about 4 hours. So we had to stay one night. We left on bath day, so me and mom got my little man bathed early. My sister flew in right before we took off so it worked out well. And mom and Britt didn't even have to change his neck/trach bandages because I was back the next night to do it (that is done every day). I still can't believe I left my bubba overnight. But he was in the best hands possible- no doubt about that!! Mom and Britt didn't sleep much- they just rotated and took turns watching him sleep because they were scared they wouldn't hear him and wake up to suction him when he woke. It was a blessing the way things happened, though, because he was sort of "knocked out" after bath and for the rest of the evening I was gone, so he didn't really reach for me much (he's been a Mommy's boy lately, and I'm NOT complaining... I'm loving it). So to leave for an entire night was really hard. But I knew I had no choice.
ANYWAY... on to the news...
Not necessarily good news, but it depends how you look at it.
We met Dr. Tolar on Friday. He was incredible. He made me feel so comfortable. He shares my passion for EB, for a cure, for these poor children. He is a good man. And I'm so glad I took this trip to meet him in person. It helps you to trust someone by actually looking in their eyes.
He walked in and I could immediately tell that this was not going to go as I had planned.
But that was okay, too.
The first thing Dr. Tolar said was along the lines of, "I looked through all of Tripp's pictures and charts and he's a very sweet and very brave little boy, BUT he is very very sick."
I knew right then and there that my idea of what I thought was going to happen was not reality.
I was let down and relieved at the same time. I knew this was a "last resort" on saving Tripp's life. But I also was absolutely sick to my stomach about putting him through such an awful procedure when he's already been through SO much.
Now don't get me wrong, Dr. Tolar and I talked a long time about everything. He made it very clear that if I wanted to bring Tripp to MN, that he would make it happen and that we could try to get him to a point where the transplant might be "semi-safe." But he also said that he is 100% sure that Tripp would have every single complication from the transplant. And he looked me in the eyes and said that he thought that Tripp was too sick to survive it. He was not trying to "sell me" the BMT, he wasn't telling me that for my benefit, he was sincerely concerned about my son. I felt that for sure. And I respect him for that.
I think the biggest thing that stood out in our conversation with Dr. Tolar was when he told me that he "sat in" on an EB support group. It was a group of older children who had Dystrophic EB. He said that when the kids were asked if they would rather have never been born than have to live with EB, EVERY. SINGLE. ONE. of them said that they would rather die than live with EB.
That is incredibly heart-breaking.
He said that I am "Tripp's voice." Tripp can't tell me what he wants, so it's my decision to do what I think he would want and what I think is best for him.
He told me that even though Tripp's biopsies were inconclusive to Herlitz or non-Herlitz (the two subtypes of Junctional EB), that he was 110% certain that Tripp was Herlitz- no doubt. And it was then that he looked at me so sincerely and said that it was absolutely unbelievable that Tripp was still alive. He complemented me for my care and devotion to my son. It wasn't until then that I started to cry. I know part of the reason Tripp is still alive is his care, but to hear it from Dr. Tolar... was pretty humbling.
He said it was admirable that I would make the decision to keep him at home for the "end of his life" instead of opting to take him to the hospital.
Admirable = the hardest thing I will EVER go through.
So now... what's next?
Your guess is better than mine. Dr. Tolar said that he would help me with whatever I needed and would support me in whatever decisions I made. He also said he respects my decision not to go forward with the transplant. He, along with our amazing team here, is going to help me with pain control and trying to keep Tripp as comfortable as possible.
Back to square one.
When we came back from Minnesota on Friday, Tripp was feeling horrible. The next day, he was running 102.6 fever, shaking in pain, and just crying. He hasn't wanted to get out of his bed, because he knows he has to get his diaper changed. Then he doesn't want to go BACK in bed from the rocker because he knows he's got to be changed again. I switched him back to the Dilauded for pain (along with the Methadone) and it seems to be helping a little, at least sedating him a little more than normal.
Not something I want, but again... it's not about me. It's about his comfort.
He hasn't stood up in well over a month. He lays on one side of his body, in the bed and in the rocking chair... hardly wanting to move at all. But of course every now and then, fighting hard and dishing out smiles. God, I love this child.
How does a mom opt to keep her son at home and watch him die? I'm so sad.
I don't know. I have NO clue how hard it will be. I have no clue what it will entail. But all I know is that my little boy deserves nothing more than to be COMFORTABLE. And if the transplant is not an option for him, then taking him to the local hospital and sticking him with needles and IVs is definitely not an option either. He will see Jesus when it is time and when he is tired of fighting.
I don't know when that will be. And I'm trying to become okay with that.
I'd be flat-out lying if I said that I'm not angry. Of course I'm angry that my baby is suffering so much.
But I'm praying A LOT. More than I've ever prayed in my entire life. I'm trying to understand. I'm praying and pleading and begging to understand. But I know and trust that I WILL understand with time.
I think I'm struggling the most with "keeping him comfortable." If I have to keep him home and watch him die, then why can't God at least help to make him comfortable?
ONE DAY... I will understand.
And like I told Dr. Tolar, I will fight to my death to cure this disease so that no other child has to just "wait to die." And so that no other parent will ever have to knowingly watch their child's life fade away.
A sweet lady wrote this on the "Prayers for Tripp" Facebook page.
It made my heart smile.
While I prayed for this child this morning, I asked God, "How can this be? Why? This poor child is innocent and hurting! Why does this child endure this? What could possibly come from this?" He answered me, "Child, this child is made PERFECT! He is my vessel! He is the exact tool being used everyday to draw others into my kingdom! Although through your natural eye you see pain, sores, disease, hopelessness, and weakness... I see comfort, beauty, health, joy, strength and compassion! This child has brought many to me! He has brought the hard hearted to be compassionate! He has brought the depressed to have joy! He has brought many that were weak and caused them to be strong! This child has brought LOVE to so many and THIS CHILD is MY CHILD! Perfectly made indeed!"
Thank you perfect wonderful sweet strangers... for loving my child.
When I feel like every day is groundhog day and I feel like I can't possibly get out out bed just to "watch my child suffer" knowing I can't help him... you all give me the strength to do so one more day.
Now, I've held off on writing this paragraph for a while now, but I have to get this off my chest. It's time for me to educate the (very few) people who have been leaving ignorant and ugly comments on my blog. Such as this little "preview":
"A real mother would let their child go if they were suffering so much. I would rather my child pass peacefully from this world in my arms instead of endure a lifetime of blisters, wounds and blindness just so I could selfishly keep him in this world for my benefit."
Newsflash, lady.... I cannot just take my child's life. What would you suggest I do? Suffocate him? Overdose him? Euthanize him like a dying cat??
I'm trying to write this without being ugly, because I know that what was said was out of ignorance and people that write or think these types of things do not fully understand our situation.
The main point is that people that write these ugly things do not have sick children. So they don't have a clue what they would do in my situation. The last thing I am doing is using Tripp's sickness for my "benefit"- I wish I didn't have this blog about my sick child. I wish I didn't have to fight everyday for his life. I wish it wasn't my life-goal to educate the world about this life-threating and cruel disease. I wish I didn't have to be "mom-inated" in contests because my child is dying. I wish he was healthy. I wish he could run and play like your kids do. But he can't.
So before you go casting stones and thinking that I'm "selfishly keeping my son alive."
Get your facts straight.
If I could take my son's place, I would.
If I could take his pain away in any way I knew how, I would.
But he's not an animal. I cannot euthanize my sick child.
So you (very few) people out there who call me selfish for "letting my child suffer"...
It's not my decision when he leaves this Earth... it is God's. But it IS my job to make him as comfortable as possible until that time comes. And I am trying my absolute hardest to do that.
I pray that God never gives you a sick child that you YEARN with every inch of your being to save.
And P.S. I forgive you for saying the ugliest things I've ever read in my life.
And I will pray for you.
But on a much brighter note, we are receiving so many ornaments that we had to get another tree!! They are flooding in. You guys are unbelievable. I just can't thank you enough.
I hope everyone has a great Thanksgiving week.
I know, along with all of you, I have MUCH to be thankful for.
Make sure you thank God for your many blessings...
Sorry I've been MIA, but finding the time or energy to blog lately is nearly impossible. I just wanted to give you guys a brief update- Tripp is doing about the same. He goes straight from the bed to the rocking chair and back to his bed- and that is what his days consist of. Some days will be better than others, but even on a "good" day, he stays in the rocker and will give us some smiles. He is currently on the last oral antibiotic option (the strongest oral antibiotic we could get) and its still not helping with his pseudomonas. He is literally covered in infection and yeast, which means he's constantly itching. I've started the Tagament which has helped a little, but he is still so uncomfortable. Baths are still unbearable. He is constantly running fevers and recently having more and more new blisters popping up. The area around his feeding tube is so raw and his feeding tube is leaking (going up in size won't help because it will only make the hole bigger). So there's nothing we can do- and feeding him or giving him his meds burns that area do bad that he cries and holds his belly each time. So it's been hard just getting enough nutrition in him to keep him gaining weight. But he's a fighter, I'll tell you. He's not ready to give up... He's such a ham when he's feeling okay.
On a brighter note, you guys are doing an amazing job "Trimming Tripp's Tree!" Thank you all so so much- you are SO kind! And most of you were right when you said we would need a bigger tree! I never thought we would get the response we did. You all are amazing and these ornaments are something I will treasure for the rest of my life. It is so touching to see the people across the world who love and are praying for my little man.
Please continue to keep us in your prayers. Like I said, I'm in the middle of some big decisions and I am trusting in God that He will guide me in the right direction to make the right choices. I will be giving a more "lengthy" update on what has been going on with us next week! Just please bear with me and pray really hard:)
And as always, THANK YOU all for your support. We are blessed beyond words.
P.S. If you would like to see pictures of Tripp's ornaments, I've been trying to keep up with posting them all on my Facebook page. You can see them HERE.
Because of you, my child does not know a life without pain.
A simple touch causes him pain.
Because of you, my baby does not live the life that a child should live.
Because of you, he can't even be around other kids.
We've never been on a play-date.
He has never played in the dirt.
Because of you, my TWO year old does not know what the park looks like.
Or what a bike looks like.
Or what a dog looks like.
Hell, I don't even know if he remembers what his MOMMY looks like.
Because of you, my son has never spoken a word.
He cannot say "Mommy."
Because of you, he lives with a tube in his throat... and still has trouble breathing.
When something is wrong or something hurts, he just cries big tears and can't even tell us what is wrong.
Because of you, he cries to get out of bed in the morning because he knows he has to have his diaper changed before he can rock-rock.
Because of you, ALL HE WANTS TO DO is rock-rock.
(I mean LITERALLY- that is ALL HE WANTS TO DO).
Because of you, when I say the word "bath" my child does not get excited and ask me if he can add bubbles to the water or bring toys along... instead he cries and gets extreme anxiety thinking about how painful it is.
And I am the one inflicting the pain.
Because of you, he has no idea what it is like to actually sleep through the night.
He doesn't get to "snuggle" with his Mommy before bedtime.
Or any time.
Because every touch is painful to him.
Because of you, I have a mini Pharmacy in my house.
And I could possibly build a small house out of the bandages and ointments he uses in one month.
Because of you, my son has not be outside in literally over a year.
Because of you, I cannot go swimming with my son.
I cannot take him to the zoo.
Or the movies.
Or to a friend or family member's house.
Or take him ANYWHERE for that matter.
Because of you, my child is so confused as to what "hungry" means or what "full" means. He gets fed by a tube 3 times a day on my time, not his... because he can't tell me when he's hungry.
And if he does feel hungry enough to put something in his mouth, it hurts too bad to keep eating.
Because of you, my baby has infection eating away at his raw sores.
Because of you, he never stops itching... not even after his bath.
Because of you, my child could not dress up for Halloween this year... and he has never been Trick-or-Treating.
Because of you, he spent last Halloween in the hospital, and this Halloween in the rocking chair, crying while holding his stomach in pain.
Because of you, last Christmas my son was too sick to enjoy a single toy from Santa... and this year, he will not be able to see his Christmas tree, his ornaments, or any of his presents.
That hardly makes it easy to get in the "Christmas Spirit."
But then again, you make NOTHING easy.
He won't get to help me "bake cookies" for Santa, or he won't be shaking me at 5 AM on Christmas morning to wake up so he can open his presents.
Because of you, I have a feeling of absolute helplessness and disgust in my stomach every single day- whether I am smiling or not. It never goes away.
Because of you, I secretly laugh inside when someone complains about something.
I can't help it. I try not to laugh out loud. But it's humorous the things people complain about.
Because to me, my son is the only one who needs to be complaining... but he doesn't.
You know why?
Because of me.
Because I am the BOMB at pretending like I don't hate you for what you have done to my baby.
My heart constantly feels like someone is giving it an "Indian burn"... twisting it in knots.
Because of you, I feel as cold as ice... just plain emotionless and heartless sometimes.
Almost like I can't understand why everyone's life can just go on while my baby is suffering.
Shouldn't the world just stop... Because of you?
Because of you, my only child's life is slowly deteriorating before my very eyes.
And because of you, there is nothing I can do about it.
But I will beat you.
My son may or may not have the chance to beat you,
but I will.
You might think that you can win, but you can't.
I will not stop until the mention of your name is known across the world.
Until the doctors hear of you and say: "Psssh, EB?"
"That's nothing, we can fix that!"
Because of you, it is my goal that no child should suffer like mine does.
Because NO child deserves this pain.
Because NO parent should have to be making the decisions that I am making.
I can't believe EB Awareness Week is over already. I sure dropped the ball this week, but NOT YOU GUYS! You have all been so amazing in helping us spread the word about EB. I hope that it doesn't end here and that you will all still continue to be advocates for Tripp and for all the people living with EB.
I haven't blogged about what's been going on with Tripp because it's been kind of rough around here, but I promise I will soon. He had a really tough week in the beginning, but the past 2 days have been a little better. But in honor of EB Awareness Week, I want to this post to focus on people who have helped us and other families through this difficult journey.
I want to take the time to recognize these people/foundations that sometimes go "unnoticed" in the EB world. These are 3 women who are very dear to my heart- and I've only had the honor of meeting one of them, but one day I will meet the other two... I am positive. These women may often get caught behind the scene, but without them... many EB families would not receive the support and care that they need and deserve. These are people that deserve recognition for their hard work and dedication to the EB community.
Board Members~ Steve Thrasher, Jim Fewell, Liana Fewell, Jannette Braa, Karen Battaglia, Claire Murray
The Butterfly Fund is dedicated to helping EB families and now also families who have a child diagnosed with any serious life altering disease.
100% of the proceeds of their events & donations go directly to family assistance in the form of financial aid, food, housing, clothing & care.
Absolutely NO salaries are paid.
They are not federally funded or grant funded, so the amount of funds relies solely on donations from kind businesses and individuals.
The Butterfly Fund does not discriminate. Anyone and everyone who has a child with a serious illness may inquire with them.
100% of the money they raise at their Annual event- The Butterfly Ball, gets allocated to as many families as there is money.
They give every bit of the profit away.
This fund has reached out to us and is still reaching out to us on MANY occasions.
Here are some examples of the services they have done:
-They provide Kicky Pants clothing for many families with EB (they've given Tripp MANY of his shirts- which are VERY expensive and SUPER awesome!)
-For 4 years, they have been paying a large share of the rent & living expenses for a local young man who has EB and they hold a special annual event just for him…sometimes more than once.
-They have bought much needed baby items for a family who's baby was born with MS
-Have given gift cards to a family whose baby was born with CP
-Sponsored a companion dog for a young girl with EB
-They bought a car and other items for a young single Mother whose son has EB
-Have given funds to approximately 15 families, with an array of catastrophic illnesses.
-They sponsored Aubrey’s 5K and Tim Ringgold’s various events and fundraisers
-They sponsored a young boy in Sonoma who was in a serious car accident/volunteered at his event
-Helped purchase bandages for Raul, who has EB and was living in an orphanage
-They sponsored a young man who is paralyzed and has brain damage
-They've helped a family financially who had a young boy with a brain infection
-They've donated Art supplies to Camp Wonder
-They honor 2 families every year at their annual Butterfly Ball – tell their story and if need be, help them financially. These are families who have or had a child with a catastrophic illness or event.
*1st Annual Butterfly Ball*
Cody Cordellos- a young man who has no family support live a better life.
The Shiery Family- 5 year old daughter, Rachel died from Brain Cancer
*2nd Annual Butterfly Ball*
The Spaulding Family: honored Garrett who has EB
Anim Vinson Family- Honored Her son William who has EB
*And this years honorees*
The Pop Family who lost their daughter Elle last year to EB
And The Kragler Family whose newborn daughter's delivery at birth caused lack of oxygen and she now has CP. She is 3 years old and cannot walk or talk.
-They attend other fundraisers for children and support them financially
-They have helped the Cannell Family in the adoption of their 2 boys by raising awareness and funds.
-They raise awareness for EB any chance they get, including having a booth at very well attended Art shows and events.
-Mrs. Laurie's daughter, Allie owns a retail children’s store and she is constantly having items for sale that raise awareness for The Butterfly Fund and EB at the same time.
-They buy Christmas presents for families who have children with catastrophic illnesses that otherwise could not afford them!
Please visit their website and see how this family of angels work so hard to help other families who are in need. They don't get enough recognition for what they do.
Thank you Mrs. Laurie, Allie, Mr. Michael, and all who work hard to make this fund possible.
Mrs. Leslie Radar
I will never in my lifetime forget Leslie Radar.
She was the first mom (and really the first "EB experienced" person) that I spoke with after Tripp was born. Her daughter, Lauren lost her battle with Junctional EB at just 7 months. She was my support when I received the news that Tripp was diagnosed with "Junctional" EB.
She was so helpful, so brave, so understanding, and such a great listener.
She helped me to get started and get on my feet with everything that I needed to properly care for Tripp.
She is another amazing person that I have yet to meet face to face.
After her sweet daughter Lauren received her angel wings, Leslie started the New Family Advocate Program with DebRA. She joined the DebRA Board of Directors and she organized the Wound Care Clearing House in her own home (but it is now being run through DebRA office). Then, she joined Hollister Wound Care as the Coordinator of EB affairs. Hollister is very compassionate and supporting of the EB community. They are always striving to make wound care products that improve quality of life by having comfortable dressing that are virtually pain free to remove. Leslie makes personal visits to the homes of families with new EB babies. She continues to help EB families with all wound care product questions, insurance issues, and tips and suggestions on how to use products. She informs families of EB friendly shoes and clothing, and assists new families to network with other EB families and social media sites.
Leslie likes to be "behind the scenes." But I think she deserves a tremendous amount of recognition. There is NO better support than a mom who has been through the exact situation that you are in. Leslie has dedicated her life to helping other EB families. Thank God for people like her who use their experiences to help and educate others.
Thank you, Leslie. You're my hero.
Ms. Geri Kelly-Mancuso
Geri is the EB Nurse Educator for DebRA of America.
Ms. Geri will forever hold a very special place in my heart. She was there from day one (she talked to my dad a lot in the beginning when I was in "shock,") but then she and I communicated on a regular basis. She sent us out care-packages right away when Tripp was born. She was always available when we needed her and she actually came to our house for the new patient visit when Tripp was about a month old (Mrs. Leslie Radar wasn't able to at the time) and spent the day with us, talking and sharing information that we needed to know. Geri is essential in the EB community. She is very knowledgable about EB and will work hard in every way possible to help in whatever way she can. Whether it be communicating with doctors/patients across the world or just lending an ear when you've had one of "those" days. She is amazing and will be a friend of mine for the rest of my life.
Thank you to EVERYONE who works "behind the scene" or not for our family and all the EB families. I know I speak for all of us when I say that we truly appreciate what you guys do.