I'm sorry these past few days have been so rough, bub. It's not fair that you have to hurt. It's not fair that you can't do the things that normal kids get to do, or that you have to take a bath in tremendous amounts of pain with raw, open sores all over your body. It's not fair that every single breath you breathe is like work and a struggle to stay alive. It's not fair that as you lay next to me right now, you're on so much medicine but yet you are itching all over and completely miserable trying to sleep. You never catch a break. A good day for you would be someone's worst nightmare. I'm praying hard, buddy, that I make the right decisions coming up soon. I pray that we can find out what's going on with you (this time) and that it's something that we can fix (temporarily). But if I'm going to be honest with you... I'm praying for a miracle. Because we are getting to the point where your sores and infections are taking over and there's not many options left to treat them without sticking you and putting you in the hospital. I said I wasn't going to do that to you. But that will be the hardest decision of my life. I hope you'll help me through it. You're so brave, bub.
I love you.
Oh Momma. I'm so selfish sometimes. Like tonight when bath was going so horrible and I "shut down." I got quiet, I got short, and I got moody. But you, angel mother... you take it all in stride. You're sitting there, watching your daughter in pain AND your only grandson in pain. Probably watching every word you want to say because my bratty self might jump down your throat (even though I learn that from you:) And I never ask if you're okay. I'm sorry. I know I get my strength from you, you superwoman... but you don't have to always be strong for us, you know? I'm the luckiest girl in the world to have you. You're my strength when I have none left, you're my brain when mine is just plain "broken," and you give me hope when I'm ready to give in and give up. I am who I am today because of you- because of what you've instilled in me and because of the example you have shown me. I am so proud to call you my mom, but also proud to call you my very best friend.
Dear Dr. Defusco,
I know that when we had to choose a pediatrician on the south shore, that God led me right into your office. You know why? Because we weren't even supposed to see you that very first day. I had called to make the appointment with another doctor, but she wasn't in that day, so they gave us your appointment. And after I met you, I knew that you were ours and that we would never switch pediatricians again. I could tell the very first day that you love your patients and that your heart is in your work (and I truly mean that). I could never do what I am doing without you. You put your whole heart and soul into helping Tripp from day one, and from the bottom of my heart I thank you. I appreciate you. And I hope every doctor in the world can learn from your devotion. You never get frustrated with my constant calls or texts (at least you don't show it to me:). I know you feel helpless just like I do... and I know that this disease is not what you are used to dealing with, because you are a pediatrician- not a hospice doctor, not a pain management doctor, not a hematologist. But do you play all of these roles and more for Tripp? Yes... and you play them well. It has been such a blessing to me not to have to deal with a million different doctors- because YOU take care of what needs to be taken care of (with the exception of our fabulous ENT, Dr. Rodriguez). You communicate with the other doctors so I don't have to. I just want you to know that you are more than a doctor to us... you are a friend. And pretty much an angel.
No matter what happens in the future, you are a HUGE part of the reason I got to see my son turn 2 years old this year. Thank you for believing. Thank you for your persistence. Thank you for encouraging me. And thank you for never giving up on my son.
Dear all of you precious souls who support us,
You know who you are. And I'll be honest... do I get time to respond back to every message or e-mail? No. But do I read every single message and e-mail I receive?... YES. They bring me hope and encouragement when I'm having a rough time. They make me feel like I'm not in this alone. The amount of support we have received is indescribable. I am not sure why we were so fortunate and blessed with all of this, but I know that I thank God every day for the people He has brought into our lives. Thank you all for standing by me through the ups and the downs. Whether Tripp is thriving and standing up to play, or whether he is sick and totally immobile, we always have people who are supporting us, praying, and believing in a miracle. Please know how much that means to me. It's hard to thank you each individually... so thank YOU reading this... for reaching out to us, following our story, and praying for my little Bubba.
I hope you didn't think I was going to give you a break tonight, did you? I need you tonight more than ever. I know that you know pain, God. You sent yourself in the form of man to Earth to be crucified- the worst possible form of death (other than EB... just kidding...kind of). You know Tripp is suffering- just like you suffered. Sometimes he reminds me of you, God... when he cries and coughs really hard and all of his little scabs start to bleed and there are lines of blood just running down his face. I think of you and the crown of thorns stuck into your head. And how many times you were beaten and tortured. I'm trying, God. I'm trying so hard to understand what Tripp's purpose is. Or more than that, HOW LONG his purpose is. I know he's brought people back to prayer, back to church, helped us to love our children more, and appreciate little things that we never appreciated before... but he's miserable, God. My sweet boy is tired. And I know that I'm not telling you anything that you don't know... Heck, maybe you and Tripp communicate on a daily basis and Tripp knows exactly how long you expect him here on Earth. That's really cute how you guys are keeping me out of the loop, though... Probably joking together and saying, "how many times do you think she's going to ask for her miracle today?" No, but really... I trust you, God, I really do. And I truly believe that you know what you are doing, so...
"When I am afraid, I will trust in You."
I'm afraid. I'm sad. I'm anxious.
But I'm trusting.
Sweet Jesus, what I wouldn't give to go back to this day and be able to look him in those beautiful brown eyes again...