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!



  1. {{{Hugs}}} Your always in my prayers <3 Love you & Tripp.

  2. Courtney,

    Your dear little Tripp has been given such an important job, he's in charge of bringing people to GOD. He's doing such a wonderful job and suffering all the while. I can't begin to imagine what you go through on a daily basis just trying to care for your precious child. If prayers could cure him, he'd already be cured. I have faith that God will take care of Tripp. I do believe like you said that he and God have worked out a deal & I pray that he doesn't have to suffer too much longer. I'll continue to pray for Tripp & all of the children with EB. Kathy Guillot, Carriere, MS

  3. Dear Courtney,

    We don't know each other, but I think of you and Tripp often. I hope you are able to get the help of hospice for Tripp. As a mother myself, I would lay down my own life to alleviate the suffering of my children. I grieve with you, in hearing of Tripp's suffering. I am so sorry for his illness. Sending you warm wishes from CA... jt

  4. That is a beautiful poem, and yes, it does describe Tripp perfectly. His suffering has definitely unlocked a lot of love in my own heart, and although I know I will probably never get to meet Tripp on earth, it will be a truly joyful day in heaven when I can finally meet him - and give him a great big hug!

  5. And a Brave little soul indeed he is!!!! He Chose to Save and I am forever Grateful to your beautiful boy!!!!!!

  6. Much love to you and your little miracle

  7. Oh interesting thing.. when i was submitting the previous comment, the verification word that appeared was "stesti" which means "luck" in czech. I'm sending it all to you, too !

  8. Can't imagine how many parents this poem has held up, but yet it seems like it was written just for you. Tears are streaming from my face and my heart truly aches for you - I am speechless!

    I so wish that I could bear some of this burden for you: physically, mentally, spiritually, but most of all emotionally. For whatever reason, God did not allow us to do that for each other. Upon typing this, I realize that if we could bear each other's pain and suffering then we would not need God so much and the sacrifice that Jesus gave on the cross would have just been in vain! As painful as it is to read, thank you for sharing your heart and your precious life that you have with that sweet angel with us! And on Tripp's behalf, thank you for being such an awesome mom to such a beautiful little fella. Loving you (without ever having met you - maybe that is one example of love that the poem's author speaks about)from Baton Rouge,Kelley Warren

  9. What a beautiful poem, thank you so much for sharing. Tripp is loved by many, and he is certainly making miracles and bringing people together. Praying always...

  10. Sending you lots of love and prayers Courtney! You and Tripp are so lucky to have each other, and the rest of us are so lucky to have you! Thank you for sharing Tripp with the world, he's a beautiful little boy and a such an inspiration!

  11. This poem says so much, as if it were written especially for him. It's not wrong, nor does it make you a bad mom to pray for Tripp to be at peace. He has suffered so much. I completely understand. My Mom passed away from cancer. It was bad at the end. I prayed for her suffering to end.
    Every night, I pray for Tripp and you, and your family.
    Love and prayers,
    Carla Spradlin

  12. God Bless you and Baby Tripp. My prayers go up for all of you.

  13. What a beautiful poem. Thinking of you today and every day.

  14. I'm so sorry to hear Troop is still not feeling great. My family prays for him all the time and he (&you) are always on my mind. That poem is perfect for Tripp. Thank you for sharing.

  15. My heart breaks for you, and for Tripp. No child should have to suffer this way. No mommy should have to watch her child endure such pain. I pray for you and Tripp daily, that he will be free of pain and that you will continue to have strength. God bless you, Courtney.

  16. Courtney, I dont know how you do this. I can honestly tell that God handpicked you for Tripp. Not only do you and Tripp bring love in the hearts of your family but you bring love in the hearts of people all over the world. I understand that you feel guilty but dont. I can say that I would be praying for the same thing, to e honest, you making it this far just proves your strength and that you have nothing to be guilty about. Remember that God is with you and He does not want you to feel guilty. Tripp is YOUR angel and he will never ever leave you. The poem literally brought tears to my eyes. Tripp will stay in my prayers just like he has been since I heard your story a year ago.
    Love to yall and God Bless

  17. Courtney, Every post you write I am re-inspired to continue letting the world know you and Tripp and many other EB families are out there, and what they can do to make a difference in the world of EB, and just how important it is. We love you and thank you for continuing to share your world with us. You are more amazing then you may ever know...

  18. I just have fallen in love with Tripp so much and it breaks my heart to know the pain he is in. I am praying for God to comfort him and give him some relief, as well as his mommy who is living with the pain of watching her child suffer. I wish so much there was something I could do to help but I know praying will be the most effective thing I can do.

  19. Courtney, praying for you today. I think you have a brave soul! I'm amazed at the strength you have. What a blessed baby boy to have a momma like you.

  20. That's such a beautiful Heart hugging poem. Sending prayers for all of you.

  21. Dear Courtney~
    I know you've heard it thousands if not millions of times but I want you to know what an amazing job you are doing. Tripp is so very fortunate to have you as his Mommy. May God bless you and your family this holiday season.
    San Diego, CA
    PS- I'm sure this has been suggested before but what about a foley catheter or rectal tube to eliminate some of the diaper changes? Sorry, it's the nurse side coming out of me.

  22. Through the tears, sending you all lots of love and prayers. There is nothing on Earth worse that watching your baby suffer and your strength amazes us all. One day Tripp will let Jesus know he's had enough and it's time and he'll be sitting on Jesus's lap at peace in no pain, his job will have been done. NO one can find fault in your wanting Tripp to end his job & his pain. He is such a tough little man. We love you all so much! He's done his job well. We,as always continue to send prayers....Thursdays forever! ~hugs~ to you all!

  23. Courtney-God has made a pinkie swear with you- remember? He is with you and your brave little soul, Tripp. I send nothing but love to you, Tripp, your momma, your dad and all your extended family who love your little man!

  24. God bless and keep you Courtney. So much bravery from you and Tripp and everyone in your world- it astounds me. Thank you for the pain you go through articulating your life to strangers. You have taught me so much. Every time I start to lose patience with my child, I stop. And I thank god for him and his health and presence in my life, and what he is here to teach me. Don't feel guilty about your feelings. Only you know how to cope with the weight of that much pain and compassion. And I think you are doing a better job than any of us could ever. Blessed Be, sister. <3

  25. Courtney, I woke up thinking of you this morning. God must hear your prayers and know that you need the prayers of others. I am praying for strength for you and your mom, and for comfort for your sweet boy. My son has EB as well (simplex), but I know that I can't even imagine all you have gone through, and all your son has endured. You are such an amazing mom, with such determination to endure, and faith in our God, who created your sweet Tripp with purpose. Thank you very much for sharing your faith and journey with all of us. I cannot express enough how much I am amazed by the care you take of your son. I will continue praying for all of you.

  26. I don't have what you would call faith. I have lots of questions and no answers. Until now. Sometimes it just takes the artistic words of a stranger to make things "click." This post includes a poem that made things click for me in a way they never have before. I felt something in my soul that I have never felt before. I got answers I have been searching for for over a year now to no avail. I have endured hardship along side my family this past year, but I PRAY to GOD I will never know your pain. You have given me a wonderful gift through your words of pain...Faith that there is more than meets the eye, Hope that love and kindness will prevail, and Gratitude for all the BLESSINGS in my life. I knew when my son was born there was something far more powerful than chance and science at work but I just couldn't put the pieces together...I have now. Thank you Courtney and Tripp for helping me "see" what has been right in front of me this whole time. I pray that you will soon know a "life" without pain, but of joy and happiness, Tripp. With sincere love,
    Beth C.

  27. Many prayers for you and all the other families and children of EB. May you feel the love and strength of God's love each and every day.

    Blessings and soft big hugs, Lori m

  28. Courtney, I want you to know that I am praying for mercy from our Lord and Savior for you, Tripp and your mother. Your are such an encouragement to me and as I continue to read your blog I see the hand of God working through you and I can truly say, Our God Reigns! He has chosen you all for this at this place and time. This side of Heaven you won't know His plan but we all know He will use this to bring someone to a saving knowledge of Him! Sending love and prayers from Magnolia, AR!

  29. What keeps Tripp going is your LOVE, second only to His Love for Tripp. Praying for a Christmas Miracle.

  30. I know what it is like to look at one you love and just want to scream, Why God why? Why do they have to suffer so? Why can you not have mercy and take them home?

    And I know what it is like to see the peace on their face when they finally do get home. I hope for you, that peace gives you peace. While it doesn't make the loss of our loved one any easier, it does, at least for me, made it easier to let go.

    I truly hope and pray that when Tripps peace does come, that you see it, and feel it, and it gives you comfort.

  31. First time poster, long time follower. Thank you, thank you, thank you for sharing Tripp's life with us. He is the most amazing kid. I wish he didn't have to suffer it's just so unfair. You call him your hero and I just have to say you're my hero.

  32. I am sobbing. I cannot comprehend this suffering. My heart goes out to you. I am praying. May God give you strength to carry on each day. You and your son are truly an inspiration.

  33. You and Tripp both have hero in you...more than anyone I've ever known. Hard to know what to pray for, so I just pray that the will of the Father will be done. Sending love.

  34. Love and hugs and strength to you and your precious little boy... your very brave little soul. You have touched my heart today, immensely. Jill @BabyRabies

  35. I think of you and Tripp every single day and pray for you. I'm so sorry to hear that Tripp is suffering so much and I pray for his comfort. I think of you often and, although we've never met, wish I could somehow be there for you or be of some help. I admire your strength, your faith in God and your love for your sweet boy. You are amazing!

  36. I am also a first time poster,long time follower. Thank you so much for sharing your story with all of us you truly have toched my heart in more ways then you will ever know. I continue to pray for you and Tripp everyday. You are a great mother and god definitely couldnt have picked a better mommy for Tripp. I was in tears sobbing as usual, when I read your blogs you are a true inspiration.I believe that Tripp is a brave lil soul and he has a deal with god. You and Tripp our my heroes!

  37. I think about Tripp often and wait for a post to see how he's doing. Only I never really know what to hope for. Above all I hope that he's comfortable but like you said that may only really happen when he's with Jesus. If I'm so confused and I'm a complete stranger I can only imagine how you feel. Because of Tripp I've hugged my son tighter, counted my blessings, and prayed more. He's so special and you will continue to be in my thoughts and prayers.

  38. we had the same experience with the Hydroblue dressing too. I found out recently that baking soda helps fend off pseudomonas. i had 3/4 baking soda to 1 gallon of water for Joey's baths. his skin does look better (most of the time) after a baking soda bath. I have also wondered if making a paste out of making soda and vinegar and covering the infected wound would help too. i have not tried it yet but will research it more and if I find anything useful i'll let you know!

  39. My soul has been touched by Tripp from the first day I stumbled upon your blog and watched that smiling little man's face in all those videos. I would never have imagined that a computer screen could exude pure love, but that is the feeling I get from reading your words, Courtney. You and Tripp have such a blessed bond with each other and that rocking chair is a holy, sacred place. Thank you for allowing us to glimpse that sacredness. I pray to God and "offer up" all my insignificant pains and daily challenges that your's and Tripp's may be lessened. Love you little man!

  40. Father, I come before You today on behalf of Courtney and Tripp. Strengthen Courtney and be her comfort that she find solace in Your mercy and acceptance of a situation that no mother should have to bear. I pray You will absorb the pain Tripp is subject to as EB ravages the body You gave him. Meet his needs as only You are able and sustain him. Father we trust Your will and ask Your forgiveness when our faith is weak. I long to see Tripp free of his burden and laughing in the mansion You have ready for him. Until that day be our Rock in this storm. In Jesus' name I pray, Amen

  41. Tripp is so brave and your love is his strength.
    I pray for both of you every day.

  42. As the tears run down my face I pray for Tripp and you, Courtney. I live across the country and think about Tripp everyday, I have never been so touched! I wish there was something I could do to end his suffering, he is such a beautiful little boy and no doubt an angel here on earth. I will pray for him today and everyday!!!

    Kelly Cunningham Sacramento, CA

  43. trippppppppppp! thinking of you baby. you ARE a sweet little soul. Im praying for you guys courtney. xo. you are warriors. i cannot imagine being tripp. hes amazing. i pray for him to be comfortable every day.

  44. I am speechless. My heart is aching for you Courtney. My prayers are with you and your "Brave little soul". Tripp, you are the BRAVEST LITTLE SOUL anywhere and God is beaming with pride over you. Thank you for taking this journey to bring us all closer to God, love, and your mom. I feel blessed to have been able to get to know your mom, you, and your beautiful family. Merry Christmas sweet boy. Love you little one.

  45. I don't know you personally but you and your sweet little fella are in my prayers and thoughts! You are such a strong mama!

  46. Yup. That poem is perfect. It totally captures the journey Ang and I believe Bella chose. Love love love it. Sorry to hear about this morning. Trust me, my gut turned when I read that! Ugh. Remember, self care is critical in this journey. Gotta do it. Just no other way around it. I know, easier said than done, and I wouldn't say it if I didn't live it. :-) Much love to you all!

  47. Dearest Courtney, my heart breaks for sweet Tripp and for you. I SO wish there were something more I could do for him and for you - sometimes prayers just don't seem to be enough - but I know that God will carry you through this.

    Praying tonight that Tripp will have relief from pain, and that God will heal his little body. Praying for you to have peace and courage in the days ahead. You are an INCREDIBLE mom, and you are doing everything you possibly can for your son.

    We love you so much here in TX!!

  48. His suffering is incredibly heart breaking, but to live it must be unbearable for you. Are you under the care of a palliative care team now? Is anyone able to give you extra support at this stage? You have my heart in your hands, blessings on Tripp for peace and gentle days ahead

  49. I can't even comprehend what you are going through. I have been following your blog for a while now and some days I just cry and pray for relief for you and that sweet precious child of yours. I heard this song on the radio about a month ago and instantly thought of you and your child. I tried posting it, but for some reason it wouldn't let me. So, tonight as I read yet again I am drawn to this song. I hope this song can give you whatever it is that you need to make it through the day yet again. I will continue to pray for you and your sweet child.

  50. Hang in there. I admire your strength and Tripp's so much.

  51. God bless that sweet boy, I know I hug my children a little tighter because of him. Lots of love and prayers to all of you!

  52. Oh Courtney, my heart breaks for all of you. I am praying to Mary (since she knows what it is like to see her son suffer) to ease Tripp and your pain until the end. I don't know what to say except I am thinking of you all.


  53. It seems like this poem was written just for you and Tripp.

    Courtney, I just don't know what to say. My heart aches for you and Tripp. I wish there was something to give Tripp comfort, to ease this pain and distress. I am praying and praying for relief from all of this pain. I am praying for you Courtney, that God will fill you up when you are worn out with stress and when the ache in your heart is just overwhelming that He will come in and comfort you.

    I know God is with you otherwise you would never have made it this far.

    Praying and praying and shedding many tears.


  54. Hello there, I have just found your blog linked on another blog and I just wanted to say what an amazing, strong, selfless mother you are. I don't know how you do it, it must be unbelievably hard. I know I feel just horrible for my babies if they even get a bad diaper rash, I can't imagine having to watch my child go through this. But you are incredible and Tripp is lucky to have you make his days full of love and lights and comfort. God bless you and Tripp!!!

  55. Courtney, Crying and praying so hard for Tripp to have relief from this torture called EB. May your cup be filled with grace and wisdom in the upcoming days. I'd give anything to take this from your sweet baby boy. I am so so so sorry you have to experience this torture as a mother and your mom as a grandmother. It defies logic or what my mind can digest. Please sweet Jesus allow Tripp to be rescued by your angels.

  56. Courtney,
    I wish I had words to comfort you and Tripp. It breaks my heart to think about what he is going through. I will continue to keep you and Tripp in my prayers. God bless you both. You are never far from my thoughts.

  57. Courtney, there's nothing I could say here that would be as good as or equal to what someone else has already said. You have so much support here and I'm not sure there is anyone who is as deserving of that support than you. You amaze me with every post. I read every single word you say with tears streaming down my face and a wish for something...but I don't know what that something is. I look forward to every post but dread them at the same time. I want nothing more than to know that Tripp is finally, blessedly no longer in pain. But to have that means he is no longer with us. When I think of that, I think of the fact that YOU think of this every single day. And then I realize how very hard your life is. I wish nothing more than to be able to take this away. To make this precious child well and to give him the life you hoped for before EB stole it away. I know YOU know that we all are here--thinking of you and praying for you and wishing upon wishes that a miracle will happen. But I just had to add one more voice to the list of voices that are reminding you of this. I can't tell you enough how much we are hoping and praying for whatever the best is.

  58. I just want to let you know I am lifting you and Tripp up in prayer. Thank you so much for updating us so we can pray even harder for Tripp. He is such a precious boy!

  59. I pray for you and your sweet Tripp every single day. I cannot imagine what you all go through each day, especially Tripp. He is the strongest person and I pray that he has comfort soon. Always praying!

  60. I wish I could give you more than just my prayers, I wish I could take away some of Tripps pain, and yours too. All I can do, tho, is continue to pray for your sweet son. I know I'm a bit behind the 8 ball, but I'm going to be sending an ornament soon, and with it hugs, blessings, and positive energy and strength.

  61. You and beautiful Tripp are in my and my family´s hearts. Sending much love to you.

  62. I wish there was something I could say or do to help. I'm glad you can find comfort in the poem. Little Tripp is indeed a brave soul. One of The bravest ones I've ever heard of. And you... You are a very brave, strong and, wonderful mother and, Tripp is lucky to have you. I realise that what you're doing is what any mother who loves her child should do. But I admire you just the same, cause lets face it, there are a lot of children out there, especially those with special needs, who never gets to experience what it is to have the parents they deserve.

  63. Courtney,
    I don't know if this is the right place for me to say something like this, because I certainly don't want to offend you or cause people to start those comment "wars" that sometimes happen on popular blogs. What I wanted to tell you is are stronger and better than I could ever be, than anyone I have ever "known". When I read that poem, and it says that the suffering strengthens people's faith, well I just think "it's not me". Something like this actually makes me question my faith and God. I pray you don't take this in any way negative towards you, and I certainly have no place questioning God. But when a precious, smart, wonderful child suffers this much, it certainly doesn't strengthen my faith. It makes me cry out "WHY, GOD????". At night I pray for Tripp, I pray that God takes away his pain. It's just not fair.
    Love to you and your wonderful mother, and your inspiring son.

  64. In tears.. The courage and strength that lil' sunshine has is truly amazing.. I wish I could take his pain away no child deserves what he is going through. He is a HERO in every sense of the word.

  65. Courtney, all I can do is send you all my love, prayers and hugs. I wish I could do something--anything else--to help you. I send love, prayers and hugs to your Mom as well. As a mom and grandmother myself, I know she must be experiencing the ultimate heartbreak seeing what you and her grandchild go through daily. I just can't even imagine. I beg God to please provide some sort of comfort to all of you and guide you through these very emotionally draining times. Much love to all of you!

  66. Courtney,
    You don't know me but I am one of those who has held her children tighter as a result of you sharing your story and baring your heart. My faith is challenged and my prayer life strengthened by it and your family and precious son are on my daily list. Although I have never faced the sorrow you see each day, when I am overwhelmed by questions of God's goodness I am brought back to the story in Matthew chapter 6 where Jesus is sharing with His followers and many walked away because "they could not bear the difficulty of His words". Jesus faces those who are left and asks "will you leave too?" Peter (being the ever honest Peter) does not reply "of course not!" (his openness with Jesus floors me)he says "Where would we go? Only you have the words of Life." As in "even if we wanted to give up, it doesn't make sense because you're the only One who satisfies the hunger in our souls!" By this story I was strangely encouraged in a difficult time in my faith. It is all the comfort I have to give. We're praying and sharing your burden as best as we know how. Merry Christmas, may the unimaginable peace of Christ fill your hearts and Tripp's broken little body. Precious in the sight of God is the suffering of His saints. Love, The Kahle Family

  67. I pray for your lil' Angel boy and for you every single day....
    Sending love and prayers to Tripp, to you and to all those family members, professionals, and friends that surround you both each and every day.
    Love from NC

  68. Courtney, I do not know you, only what I have read from your blog. It was just by chance (or yes even fate) that I saw a link on facebook and through compassion wanted to know your story. Everyday on facebook I see someone's child is sick or hurt. Just last night I cried to my husband asking him if he could remember the last time our two boys were sick... we couldn't remember! I am a Christian and pray for my children's health and safety; however, probably like most who have it "easy" take for granted the little things in life. You have brought to my attention all these "little things". The poem is beautiful and does make sense, because my heart aches for you and your son. While I'm sure you ask "why me, why my son" I thank you for sharing your story to a complete stranger and being the soul that activates that release of LOVE. I will pray that you receive what you need.


  69. My heart just hurts with your heart for that brave, amazing little boy of yours. I pray for comfort for Tripp - true, physical, miracle-like comfort and for peace of mind for you. Your family is in my prayers.

  70. Brave little soul with an even braver, mom! Praying for your litlle man.

  71. You don't know me and I'm only now learning of your story. I completely believe the words in that poem, because here I am, feeling a renewed importance in being grateful for the good things in my life, the importance of giving love and compassion even to complete strangers, and wishing that there was something tangible that I could do to help. I owe this all to Tripp. He is so beautiful and I am so moved by the strength and courage you both possess. My heart goes out to you both. I hope you and Tripp find peace this holiday season. I am sending my thoughts, energy, and love your way.
    ~Jillian McCarthy
    New Hampshire

  72. Praying for you and your precious brave little soul.

  73. Stumbled upon your blog from the Readers Digest site... Just wanted to tell you that I am praying for you and Tripp. Thank you for sharing the "brave soul" poem. Tripp really does do exactly what the poem describes: After reading your blogs, I always hug my 16 month old a little tighter... I'll stop watching stupid television and go play blocks instead. I pray for your family every night.

  74. No words Courtney, my heart just breaks for Tripp. You will always be in my prayers.

  75. You are truly an amazing mother and I wish there was something I could do for you and your brave little soul. The two of you have changed my life and I pray for you and Tripp every day and hope you both find peace this holiday season...

  76. Tripp brings me closer to God every single day. That story is truly touching and TRUE. I hate that Tripp (and you and your family) have also had to bear the pain and suffering to bless others in this world. You are ALL amazing. Thank you for continuing to share your story. I will continue to pray for Tripp's journey and that God guides him to a peaceful path soon enough.

  77. I've only been reading your blog the past couple of months, but you and your beautiful boy have so touched my heart. Praying for strength and peace for mama, and comfort for Tripp.

    Rev 21:4 and He will wipe away every tear from their eyes; and there will no longer be any death; there will no longer be any mourning, or crying, or PAIN;

    When I think of what that will be like for your little guy, it just takes my breath away. Thank you for being brave enough to share your story and your boy. God be with you.

  78. My husband and I hold our baby a little tighter each night after having read your blog. We pray for God's comfort and blessing in your life as you so lovingly care for this beautiful soul. We pray that God will wrap His arms around your sweet, little Tripp and bring him home peacefully where he will be whole and joyous in his Father's presence.

    I have no words, but only tears and gratitude that you have shared him with all of us.

    Many hugs to you and your loved ones.

  79. I've read your posts and prayed for you sweetie as so many have. . . all of us tear up and pray for YOU too. I have a sick child myself with Spinal Muscular Atrophy who is a miracle as well and yet I still lose it that others have to go through such terrible things with their child and yours have been especially trying. You are simply amazing and your doctor in Minnesota was right on when he said what you are doing is admirable. Don't EVER question what Tripp's purpose in this life is because it's very obvious that it's to change lives. He will perhaps change more in his life than any of us will. Praising God for both of you! Hugs and love from Iowa!

  80. There really aren't any words. I can't imagine what you are all going through. You are the strongest person I *know*. As a mother, I just can't even comprehend how you must feel. Praying so hard for Tripp, you and your family.

    Also, I ordered Tripp a special ornament, and it just came. I will be mailing it off today.

    Thanks for sharing Tripp's and your story. Special Christmas blessings and wishes to you both!

    With love,
    Kristi- Colorado

  81. sending all our love to you and Tripp...bless you both....

  82. I was listening to this song at work today, and all I could think about was going straight home and sending this to you. I pray that you can find the strength and the time to read these words and that God speaks to you through it. (it's from Audrey Assad's album The House Your Building). Lots of love and prayers from a family in Kansas City:
    Pain is a forest we all get lost in
    Between the branches hope can be so hard to see
    And in the darkness we've all got questions
    We're all just trying to make sense out of suffering but

    You say I am blessed because of this
    So, I choose to believe
    As I carry this cross, You'll carry me
    Help me believe it

    Fear is a current we all get caught in
    And in its motion faith can be so hard to find
    And we all falter 'cause we're all broken
    We're all just trying to turn the shadows into light but

    You get glory in the midst of this
    And You're walking with me
    And you say I am blessed because of this
    So, I choose to believe
    As I carry this cross, You'll carry me

    And I know Your promises are faithful
    And God, I've seen Your goodness in my life
    And oh, I've found Your mercy is a river
    Your love is an ocean wide

    You say I am blessed because of this
    You get glory in the midst of this
    And You're walking with me

    And You say I am blessed because of this
    So, I choose to believe
    As I carry this cross, as I carry this cross
    'Cause as I carry this cross, You'll carry me

    You'll carry me, God
    You'll carry me
    And Your love is an ocean wide

    (Carry Me, by Audrey Assad)

  83. My prayers are with you and Tripp all the time. When I think of Tripp, tears come to my eyes every time. I can only imagine how horrific his suffering is and how much you suffer as there is nothing you can do to relieve him. I am praying now that God takes your son home, that Tripp needn't endure any more.

    You must get so much advice, most probably useless, but I can't stop myself from offering the idea that there must be some kind of VERY potent topical anesthetic somewhere that can be used during bath time, something that won't dilute too much in the water. On top of the pain Tripp is suffering, I understand what you are saying that he anticipates more pain is even more horrible for him. Would UV light kill the psuedo and yeast even if it means long deep sedation?

    You must be exhausted from trying to think up things or research them! I've heard that children's bodies can endure far more suffering than adults and Tripp is certainly among the most valiant on earth.

  84. I found your blog yesterday, and I keep reading it and wanting to know more about your precious Tripp. I cried so many tears for him last night, while I prayed for him and for you. You are such an amazing, devoted Mommy. I prayed for God to always bless you. Tripp is truly my hero, I feel such love for him!! Thank you for sharing your story with us, my world has changed through knowing of Tripp. I have a one year old son, and I hug him even a little tighter now. I realize that whatever struggles I am going through, I need to be strong, because Tripp is so strong. God definitely gave us Tripp for a reason. He is such an angel to the world. Sending my love and prayers to you all.....

  85. Dear Courtney, I just had to send the link to you. Everytime I hear this song I think about you and your lovely son Tripp. The singer is a swedish artist called Peter Jöback. I send you all my love och prayers, Åsa in Sweden

  86. Always praying for you, Tripp, & your entire family. I cannot even imagine what you are going through as a mother. But you are definitely right, he is most certainly a blessing to you & a fighter. And even though we have never met, I feel like I know you & your little guy so well & my heart aches for you all the time. You are such a beautiful person, & I admire you so much! <3 Nicole & Dyllan

  87. I recently found your blog through a mom group I am in on Facebook. There are over 100 of us, and the story of your family has touched us all. I am at a loss for words to completely describe how I feel. I admire you for your unconditional love. I admire the courage you both exhibit just doing day to day things. I wish I could take some of his pain away, that each of us could take just a little piece so that he felt none. You are both in my prayers!

  88. Always praying for you both. Not that my opinion matters but I don't think you are a bad mother for wishing him to be out of his suffering. I hate seeing my child suffer. In bad times I find myself asking God why? I really will pray for your son.
    I saw someone asked about a topical but what about oral or IV narcotic. In hospice they use a medication that is put under the tongue a lot. Called Roxanol - i am not sure if ever given to children. I know he is young but if suffering that much I would think they could do something. But that is of course your choice with your Dr.

  89. Dear mommy, I am so touched by your story. I am so sorry in so many levels and I just am in awe of yours and Tripp's fortitude.
    I have been praying for you since I came across your blog, but I feel there is nothing I can ask for that is realistic... I know from your posts that the pain will not go away, and as a first time mom I cannot start to fathom what you are going through. It breaks my heart. Every night, when I wake up to nurse my baby I think of you two.
    May the Lord be always with you.


  90. I just came upon your blog and I felt compelled to write you. I just wanted to let you know that your sweet Tripp had touched my soul and he has my love and prayers. Thanks to your story I will hold my children tighter and cherish the gift they are to me. I have so much emotion in my heart for you and your son and no way to put it to words. Please know that in your darkest moments you are not alone...your story and your son have captured a piece of everyone who has read it and you both will always have that. May God bless you and your beautiful boy.

  91. I will keep it short and and Tripp are Extraordinary! Praying for u both! Xoxo

  92. You and Tripp will also be in my prayers. I just started reading your blog and I honestly don't know what I'd do. I understand you're angry. As all other mothers would be. I wouldnt be able to let my baby go. He's a fighter, must get it from his momma:) Tripp knows he's loved and your love is keeping him strong! Reading your blog has made me look up to so much. And I'm sure a lot of others too. <3 Stacia & Gracie

  93. You are a hero and your little Tripp is precious:). Thanks for your inspiration and example. My thoughts and prayers are with your family.

  94. I just found your blog and I want to tell you what a wonderful, amazing mother you are. I have NEVER had to deal with much sickness in my life and I just cannot fathom what you must go through on a daily basis. I weep for your son's pain as well as your's. I am a mother of four children and I would never wish this on anyone. You must be one tough cookie to go through the daily struggles you go through! What an inspiration you must be to the other parents of children with EB. God bless you and your son and you will be in my prayers!

  95. I pray for you and Tripp so often. I wonder, have you thought about contacting hospice? They might have some other ideas about pain relief, but also (and please forgive me if it is too soon to say this) they know about the realities of death - the normal awful physical things that happen, that can be very scary. It's a blessing to have someone tell you "this is normal, here is what will happen next" so that you can be present with your love instead of panicky and distracted. I don't know how hospice orgs work in your area but they are generally lovely people and you don't commit to anything by calling them, and they can't make anything happen faster. You are being such a loving mother and Christian and you are making the best decisions that can be made in a terrible situation. Much love to you both.

  96. Courtney,

    I have just found your blog and am so thankful I did. You are one amazing Mommy. My thoughts and prayers are with you, Tripp, your mother, sister and your support system.

    I plan to pass on your blog, Tripp's story to our church prayer chain.


  97. Oh my gosh. I stumbled on your site from I have 3 year old twins and an so sick to my stomach knowing what, as a mother, you are going through. And your baby boy - what a beautiful, precious angel. I am a disaster when one of mine catches a cold. I truly cannot fathom what life has been like for you over the last few years. Thank God for you, and your amazing mother. I will not sleep tonight, and I will check in every day to see how you guys are doing. I don't know you, but rest assured you are an amazing mother. He, too, has been blessed with a hero. It obviously runs in the family. Much love from a Mom in Houston...

  98. Another parent of twins checking in on you...ours are close to the age of are truly promoting amazing qualities with your dedication and love for your son!!!I struggled all night with what I wanted to say(nothing like your struggles)...I cannot come to grips why Tripp or any child would be placed with a burden like this and like many others I wish I could take some of that pain away. As a father who at times USE to feel burdened by my load in life Tripp has given me new understanding....oh how we both can wish this understanding was given in another way...My thoughts, wishes, prayers and good vibes are sent your way....I wish it were more...

  99. Courtney,
    I just had to share this with you. I read your blog but rarely comment. Today my oldest child & only boy (he's 7) went on a field trip to our local mall to eat lunch & visit Santa. I was able to meet him for lunch and this is how our conversation transpired....
    Me "Riley what are you going to ask Santa for when you get up there to see him?"
    Riley "Nothing"
    Me "Why not?"
    Riley "Mom what was that babies name we saw on the cumputer the other day?"
    Me "Tripp Roth"
    Riley "I am going to ask Santa to make him better because he is magic right? I know that he is really sick but Jesus & God decided that he was supposed to be like that & they would never have decided that without a very important reason so I am going to see if they can make him better."

    It really touched my heart. Our prayers are with you this Christmas.

  100. Oh how I ache for you as you have to travel this part of yours and Tripp's journey. We have a "little soul" who happens to have quadriplegic cp and I am forever amazed by her spunk and spirit. She too has taught us so much and I will forever praise God for letting me be her mom, but I do know the ache of hurting with my child as she struggles to do what others take for granted - my heart aches for you, but I know you have risen to the challenge of helping Tripp to continue his journey and I am in awe of your strength and faith.

  101. Dear Tripp,

    You are the suffering little soul who unlocks the love in my heart. I think about you always and I check in each week on your Mommy's blog to see how you're doing. You are so very special and so very loved.

    I heard once that only the wisest of souls -- those that are most evolved -- make a plan with God to come and live on this Earth with some of the hardest challenges. And I think you are that kind of soul. You are brave, you are wise, you are strong. And God knew you would be a life changer. He knew you would spread love through your pain, just as you are.

    I too, Tripp, have a baby that has special needs and although her pain is not the same as yours, her suffering and *special* differences unlock the love in my heart and others as well. You remind me so much of each other -- fighting your fights, teaching your lessons, spreading your love to all. You knock down all barriers. All the while, us mommy's stand in amazement, wondering how you do all that you do. And in that way, I feel so honored. I know your Mommy must too. :)

    And your Mommy? Oh Tripp, she is the bravest, most special, most wonderful person I know. The depth of her love for you is infinite. She is, just like you, a very special soul. And God knew what we was doing when He picked her and your Grammy to care for you. He knew they were strong and wise souls too and that their love for you could speak to others and open their hearts. He knew they could reach out to Mommy's like me who wonder if anyone else out there was having a bumpy journey too. God is great in that way, isn't He? :)

    Sweet baby, I send you my love, I send you my prayers, and I send you as many hugs as the angels will send! xoxo

    All my love,
    Katie Hartsfield & Family

  102. Dear Courtney & Tripp,

    I just read your blog tonight and I am amazed my your strength, love and faith. I did not know about EB before reading your story but I could not imagine a better voice to raise awareness in the journey toward a cure. I cannot imagine the difficulties you both face every day, but your hope and love are so clearly felt through the words you write.

    Courtney, you are such an amazing mommy. As a new mom myself, I am in awe of your courage and selflessness. You are such an inspiration. Thank you for reminding me of what is important in life. Tripp, you are such a beautiful and strong little boy. You are loved more than you know. Please know that you are both in my thoughts and prayers. I know I'm a stranger to you, but you have truly touched me and I send you both my love and best wishes for the holidays.

    Larissa & family

  103. Hi Courtney- I just recently discovered your blog, and I can't even begin to tell you how absolutely head-over-heels in love I am with your sweet, amazing boy. I cannot get you guys out of my mind- I've been thinking about and praying for you non-stop.I love watching the videos of him drumming- he's such a talented little man! My heart has been aching SO badly for you. I hope this all doesn't sound weird since we have never even met, but I have never been so moved by anything in my entire life. Reading about your life with Tripp has made me do some very serious thinking about myself and life in general. I feel like I could go on and on, but I won't... Just know that you and Tripp are touching so many lives, including mine! Your story has opened my eyes in so many ways. Tripp is so truly amazing and beautiful, and so are you! All my love and prayers,
    Jen from MN

  104. Hi Courtney,
    I've followed your blog for a while but I don't think I have ever commented. It has touched me deeply, though. I am so sorry for what you have been called to bear, my mind really can't fathom it. You must be given special grace. Thank you for your beautiful, upbeat testimony - your witness to the world of faith in a good God who loves His people and has an ultimate plan that really is so good, even in the darkest, most desperate days. I'm sure these days it is so difficult to be upbeat. My heart aches for you, and I pray that Tripp will be relieved of his pain and that you will be able to enjoy eachother this Christmas. Celebrating the the birthday of the King who came to put an end to suffering once and for all. Don't give up faith - cling to Jesus. It will be worth it all. May he comfort and strengthen your hearts.

    What a sweet, sweet child has been entrusted to your care and you really should get an award for the world's most amazing mom!!

    love from Canada,

  105. Courtney,
    Tripp has touched so many lives. I cry and pray for you all every time I read your blog. You are an amazing mom! Jennifer H. Georgetown, Texas

  106. Praying for peace and comfort...

  107. Praying for you and especially for the little guy.

    I know this may sound odd, it popped into my head randomly - I understand your son has EB, and this is a completely different scenario (please don't laugh, I try only to tell what I've learned!) my best friend's daughter has sensitive skin, and screams bloody murder at every diaper change due to a lingering yeast infection, she tried EVERYTHING to get it to go away, it wouldn't for two months. One day She asks me to pass her the baby vicks vapor rub....and I ask why, she responds,"because it's the only thing that makes her feel better." I know. it sounds insane...but I tried it on a rash. No, they weren't open wounds, not on the scale poor bubby has, but I guess the mint in it soothed her little bottom, and her rash was gone by the next diaper change. If you're desperate for anything to help, maybe ask a doc or a nurse if it could help? I don't want to hear back that you did it and it caused him pain! *hides*

    I haven't read your full story, but have you looked into any homeopathic remedies for itching?

    Much love to you and Tripp.

    Shanna Samul.

  108. Hi Courtney.

    I want you to know that I am praying for you and Tripp. You are amazing. Tripp is amazing. You have changed my life and you do not even know me. Thank you and please know that we are praying for you.

    Lawrenceville, GA

  109. Courtney,
    I've beeen following your blog for a few months now and just read the story about Tripp on this morning. You, Tripp, and your mom are such inspirations and I pray daily for each of you. God blessed you and this world with Tripp, and he has had such a positive impact on so many people. I am blessed to follow Tripp's journey and pray for a miracle for him!

  110. Courtney has anyone offered you medical grade Manuka Honey to treat Tripp,
    We have used it on our MIL ulcerated legs with very good results, she had staph in the wounds which antibiotics didn't work to heal but the honey Knocked it and the ulcers finally healed after nearly a year. Anyway I will leave you to do the research ( if you haven't already) on Manuka, to determine if it is at all suitable in treating Tripps skin. With love and blessings for a peaceful day. V

  111. Here in Finland when it's not possible to bath elders or patients we use cleansing lotion which care and clean up a skin. Maybe it would be also easier and more comfortable way to Tripp than bath.

  112. You are incredible. I cry and say a prayer for you, for Tripp. I cannot fathom the pain you both are in. Bless your souls.

  113. Hi Courtney,

    I'm from Singapore in Asia. I just read about Tripp's & your story. & I cannot stop crying. You are an amazing & respectable mother & he is such an awesome boy! I am praying for you guys. Stay firm in your beliefs because Jesus is alive! We curse the EB; that is not from our God. Do not accept the EB in Tripp. Tripp is a miracle child & he shall be healed in Jesus's way!

    My Pastor preached in your country too. Do check him out. (
    Better still put on his sermon at home & let Tripp listen to it during the day. We have testimony that people got healed from stage 4 cancer by just listening! There is no lost to you or Tripp. :)

    God bless you & your family.


  114. MERRY CHRISTMAS to your family from the Rakocy's of Ponchatoula.
    Tripp you are the Angel God was looking for on earth. Hang on He is not through with you yet little man.

    Love you All

  115. Hi Courtney!

    I want to say that I admire you Courtney. Your way to tell people what Tripp's disease is and how well you have been treating him is something that makes you the best mother for Tripp.

    When I read all your stories about Tripp, this so fantastic little boy, I couldn't be crying when I was thinking how beloved Tripp is. He is so amazing little boy :).

    I hope all good to your family for the future!!! And for Tripp thousand of hugs :). He is a miracle!!

    Milla Ahola, Finland

  116. Hi,

    I have to comment again about that poem and your and Tripps story. It really touches peoples hearts, and as a mom I can only try to imagine what you are going thru. Your story really makes think what really is important in life, and aprecitiate the little things like small kisses and hugs. How these children really are the joy and happiness in our lifes.

    You are in our thoughts and prayers.

  117. I have been following your story for only just over a month. You guys are always in my prayers. Sometimes I wake in the night in a panic with concern for yall. Yall are always in my heart and thoughts. You are such a beautiful, extraordinarly strong individual! I want you to understand you are not a normal momma. The unbelieviable strength you have shown and your abilty to adapt and understand are not common traits, even in the best mommas, when our children are involved. It would have been easier for you to get angry and shut down, block everyone out. Instead you used yours and Tripps lives to help others, you opened yalls lives up to the ignorance and scrunity of the harsh public to share knowledge, compassion and a story of unconditional love. God has used yalls life to teach me patience, tolerance, love and to life without gruges, anger and swift opnions. You were chosen especially for Tripp! I would like to say that I would have made the same choices, but when I really think about it, in reality, here and now terms, the choices you have made are so selfless and self sacraficing, I am pretty sure I would not be strong enough to keep my own selfish desires out of the picture. That is hard for me to admit because I fancy myself an exceptional Momma, and I am, in normal every day situations. I am not, on my best day, able to hole a candle to you, on your worst, I am sure! You and Tripp are a true inspiration, my heros!! I have shared your story with my 4 young boys and reflect on yall daily weather in prayers or for strength in being a better person! Tripp, You, your parents, your entire family, yall are all such beautiful, kind, special people and have touched so many lives! I love all yall and pray for peace. With tons of love and prayers, Amanda

  118. I found your blog by running a search for this specific poem/author. I cannot seem to find an original, and at some point I decided to check out your blog.

    All I can say is, "Wow!" I have recently read a story about a newborn with EB, though I can't remember for the life of me where it was. Finding myself here was a strange coincidence. The poem, itself, was on a Facebook page, Prayers for Dyrk Burcie, a beautiful boy taken young by cancer. Shortly before he passed, I read of the passing of little Liam, from I Love Liam Lyon Facebook fame. These children lived lives such as put forward in this poem. They brought together thousands (tens of thousands!) of people in love and prayer, bringing out the best of did your beautiful Tripp.

    I was saddened as I saw the first photo, but I was soon drawn to your son's eyes. On his good days, you could see his happiness and the joy of love in his eyes. Behind his facial sores, I could see the happy baby that he was. I know I don't have to tell you that you should be proud, or that you should be comforted. I'm sure that you are. I don't know what happened between you and your ex-husband, but I thought about him as I read your story. I hope you remember to pray for him as others have prayed for you all. We can never know the truth of a person's soul, but I theorize that he has an intense inner struggle.

    I'm glad my search for an author brought me to your story. I have a child with PKU, and whenever I get down about what she can't have or do, I am ALWAYS brought to a story of a child who suffers so much more. I am reminded time and again how lucky my child and our family really are, and my strength is renewed. I am almost shamed over my little pity party, but I remind myself that we all need to focus on ourselves for a little bit. I have it, get my reality check, and move on.

    A child like yours makes an impression on a person's heart, one that will not fade. I might forget his name in a few years, with my terrible memory, but the impression on my heart will remain. It will help me focus when I feel sorry for my daughter or myself; it will give me strength and a reason for thanks. Thank you for sharing your son and your family's journey with the world.


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