I've come to the conclusion that I am one really lucky girl. Reading all of you guys' comments is honestly a really humbling experience. I know I've said this before, but I really cannot imagine going through what I went through and what I'm still going through without the support that I've been given by all of you. Not only the comments on this blog, but the emails and the actual handwritten letters people are sending to me. It's so comforting. I'll be honest, there are some days when I get letters and I just don't feel like reading them... I think these are the days when I'm feeling semi-okay and I guess I don't feel like working up a pity party. But I set the letters aside until that moment when I need a really good "pick me up" and I want to lay my fist into the wall. Those letters sure do come in handy. They remind me of Tripp's purpose here. They remind me of the love and care I gave to him that sometimes I forget when I'm so frustrated, sad, and mad.
Oh, your letters are so kind. They really are. I'm not sure what I ever did to deserve so much love and support. But I'm pretty sure it was the angelic little face and personality of my baby boy that made you fall in love. Whatever it is, I thank you... from the bottom of my broken heart!
I know I asked you guys what I could blog about because I was having a hard time trying to come up with something to say besides "I'm just plaid SAD." But I think right now I want to try my hardest to explain to everyone how I'm feeling, as best as I can, because I think it will help me a little too (gosh... that is selfish, right?)
Ok, so just maybe a brief summary...
I think I'll start by saying something that I'm not sure if I've ever said. You know how the doctors told us that Tripp wouldn't live to be a year? And you know how I watched as other EB babies passed away who were Tripp's age or younger or older? And do you know how I would say in my blogs that I knew I didn't have forever with him and that one day I would lose him?
Well, I never, ever believed that. That's the honest truth.
I could say it a million times in my head and try to prepare my brain for it- but never could I picture my life without him. Maybe it was because I literally spent every, single, waking, (and sleeping) minute trying to keep him alive, that I really and truly thought that we were going to win. I honestly thought that we could beat EB. I put my heart and soul and every single ounce of energy I had into keeping my baby alive. I tried every possible option that I could to keep him with us, all the while telling you and everyone else that I knew the day was coming when he would leave me, and not believing it myself.
And with that being said, I was totally UN-prepared for what was to happen.
I know everyone on this blog has seen Tripp's pictures and watched a few videos. But I really want to focus on what an absolutely amazing human being he was. Super human in strength, so wise beyond his years, smart as a whistle, talented in music, and had the most incredible personality of anyone I will ever know. He was always happy. As a tiny infant, and as a two and a half year old. He literally only cried when he was getting a bath or a diaper change and he was in pain... and sometimes he didn't even cry for that. I tear up every time I talk about him this way, because it's so important that people know this about him. You couldn't help but be in love with him. He was funny. He couldn't talk and never in his short life spoke one word, but made me laugh and smile more than anyone ever has. He made me the happiest girl in the world. This may sound silly to you, but since he was very small, he was always in tune with my feelings. He always watched out for me. When I was happy, he was happy. When I was sad, he would stop in his tracks and shut down. Like he was genuinely concerned about me. He did this with me up until his very last days.
He always took care of his Mommy.
There's so much to learn about life from this little angel.
There was a period about 2-3 months before Tripp passed away that is almost impossible to describe. We were EXHAUSTED. Everyone. Me, my mom, Mrs. Pam and mostly- Tripp. This was crunch-time for me. I knew he was getting sicker by the day. I could feel it. I knew when he starting interacting with us less and less that I had to step-up my "Mommy" game. This was when I started talking to the doctors in Minnesota about the Bone marrow transplants. Dr. Tolar said that in order to know if he was going to be able to perform the transplant, he would have to talk to me face to face. Now mind you, at this point, I had only left Tripp overnight one other time when he was about 3 months old (before his trach). So I was a tad bit nervous (and so were my mom and sister). So Stephen and I booked tickets to MN, had a meeting with Dr. Tolar, and together decided that the BMT was not an option for Tripp.
I was DEVASTATED.
Of course I didn't want Tripp to have to go through more suffering and poking and prying... But now- there are absolutely NO options left. There is no feeling like watching your child suffer and being able to do absolutely nothing about it.
So now what? Well when we get back after being away for about 24 hours, Tripp was MAD. He wanted me in that rocking chair pronto. And then after that day, he didn't trust us. I think this started his anxiety issues. He would "switch rockers" literally about every minute or less. I think he was nervous about someone leaving him again. So he cried and fussed constantly. Reaching up in the air to "switch off" as soon as mom or I got in the rocker.
I don't know if I've ever described this either, but for the last 6-8 months of Tripp's life, he went straight from the rocking chair to the bed- barely getting up to play. This meant that neither mom or I could even be alone with him (what if we needed to go to the bathroom.. or eat?) But what I call "switching rockers" meant that whoever was rocking him, actually stood up, lifting him up lying down (on pillows sewn together) and placed him in the arms of the next person who sat in the rocker. This is how he "made" us do it because he felt too bad to stand up.
And so then I went into Survival Mode: AKA-
"These **** doctors are not going to be right and
this **** disease is not going to take my baby from me."
We started trying everything... essential oils, topical vitamins, bathing him in "tea baths,"and even something called "miracle gel." His sores were getting worse and healing them was impossible.
Then he started with his feeding and belly problems. Every time I would feed him, he would cry, hold his belly, or even throw up. I still to this day don't know what was wrong with his poor belly. Maybe it was also covered in sores like his whole little body (makes me sick and sad just to think about that). But at this point, I tried everything imaginable to get nutrition in him... but it wasn't working. No nutrition meant more sores, which meant he was in more pain. So Dr. Defusco, Trea (Tripp's pharmacist), and I worked overtime trying to come up with a pain and anxiety medicine regimen that worked for him. What a nightmare. Bath time was an absolute nightmare. There were times in the last few weeks that I prayed and prayed that my angel not have to live through another bath (and then when it was over, I would pray and pray that God not listen to my previous prayers... poor God was probably as confused as I was). The trouble we had was that we weren't sure how much of the medicine he was actually getting because we didn't know how his little body was metabolizing it. If his stomach and intestines were covered in sores, then how could he be absorbing it? Oh, it makes my heart ache to think of the pain he was in.
The last 2-3 weeks of his life were unbearable. They seem almost like a blur to me today.
I know that when Tripp stopped fighting, I was devastated. I could tell that he stopped fighting when he wouldn't fuss us... he couldn't lift his arm to ask for a new toy... and he was so swollen, that he couldn't hold his Elmo. It was only at this time that I started feeling like maybe I really wouldn't have my baby forever... maybe he was actually getting tired. But I was still never able to picture my life without him. Maybe at this point was when the "shock" set in. Or maybe it was that my heart was literally broken and shattered into a million pieces.
The night before Tripp passed away, I honestly didn't expect a thing. I knew he was swollen and less responsive, but he had been SO sick SO many times, that I just didn't know what was ever going to come. As far as I knew, he could have held on for months longer and bounced back...
But for some reason, I woke up around 2-3 am- he didn't wake me- he was sound asleep. I just woke up on my own. His little body so swollen and propped up on blankets and pillows.
I talked to him. For hours. I held his precious, swollen hand and I told him every possible thing that I could think of to tell him. I told him how unbelievably proud I was of him. I told him that never, ever could he possibly know how much I love him and how much of a better human being he made me. I told him about my grandpas and how I knew one of them was up there waiting to ride him on the tractor, and how the other couldn't wait to finally meet him and sing "Long ago and Far away." I cried and cried. I said rosaries. I talked to God. I talked to Mary. But most importantly, I told Tripp that it was okay for him to go. That finally I was being unselfish enough to know that he couldn't fight any longer... but how PROUD I was of the fight he had. How PROUD I was to be able to be called "Tripp's Mommy." What an incredible honor it was to be able to be his Mommy.
I promised him I would be okay. And I promised him that his suffering would never be in vain.
And then I fell back asleep.
Only to wake up a couple of hours later to what I knew was the time.
He was dying.
I knew it, I could see it, and I could feel it.
His skin was tinted blue.
That skin that I kissed, cleaned, wrapped, and loved for 2 years and 8 months to the day...
was turning blue.
There was nothing I could do.
He wasn't crying. He was only breathing heavier by the minute.
And he wasn't responding to my voice or my touch.
God woke me up at the exact, perfect moment... I'm certain of that.
I ran to my mom's room and got her up. I told her it was time.
I picked up his heavy, lifeless body out of bed for what I knew was the last time.
I sat in the rocking chair with him in my lap... my mom behind his head, sitting on the couch.
We waited no more than about 3 minutes... rocking him and telling him it was okay...
and he took about 3 heavy, deep, gasping breaths.
And that was it.
He was gone.
My heart, my life, my best best friend... was gone.
In what felt like seconds.
Something left me at that moment. I can't explain what it was, but I will never in my life be the same. I'm here to say that there is NO other love that could ever compare to the love you have for your child... or at least the love I had for my child.
And that leaves me to today.
The aching, torturous, minutes of every day.
The nights- oh the nights... I dread nighttime. I completely dread having to crawl in bed without my little man next to me. I look at all of his bedding... the same bedding that was there the day he left me. I look at his pictures hanging on the wall and I get a terrible, nauseating feeling in my stomach. I hate having to live in this world without my baby. It is complete and utter torture.
And the people I see, bless their hearts, they don't understand.
How could they?
But they try... they ask how I'm doing, and me... I nod and say, "I'm fine."
I'm a strong woman. I know that I am.
But I'm not okay. Not right now.
Am I living? I guess... I'm keeping busy and putting on my happy face.
But losing a piece of your heart... sucks. Bottom line.
I'm trying to think of any way to describe what I'm feeling at this point.
Lost, devastated, sick, mad, angry...
Seeing parents pushing their kids in the grocery cart at the store is hard.
Seeing kids in church is hard.
Seeing any little boy and picturing what Tripp was or would be like at that age is hard.
Seeing kids PERIOD, is hard.
But what really irks my chain is when I (secretly) watch parents who are so ungrateful for their children. Children are such a blessing. I wish all parents would treat their kids like every single day was the last day they were going to see them. Not every one is ABLE to have kids, and not everyone is gets the honor of being able to watch their kids grow up. It's a gift. I wish people would treat it that way.
I will never be able to see my baby's first day of school.
Or his graduation.
Or see him get married.
Or have kids of his own.
There aren't words to explain what that feels like.
I've said this before... but when you spend every second of your time and every ounce of your energy on loving and taking care of your only child... and then all of a sudden, he's taken from your arms-
It's sickening, gut-wrenching, and totally unfair.
And I never have and never will say "why me?" Because if Tripp wouldn't have been given to me, I never would have known what true love was. I never would have appreciated "life" (I'm talking about REALLY appreciating life). If he wouldn't have been given to me, I would still be in my own little world, living what I thought was my perfect little life- oblivious to what was going on around me. And if Tripp wouldn't have had EB, I wouldn't have gotten to spend every single second of his life with him, knowing and loving every inch of his little perfect body. Maybe I would have missed out on something special that he did... if he would have been a healthy baby. And if Tripp wouldn't have had EB, I never would have known that such a terrible disease even existed.
It sucks that my angel had to suffer just for all of these things to happen.
I think of him as a little warrior for Jesus... carrying his horrendous cross here on Earth and now ecstatically celebrating in Heaven over what he has done.
I get that. I understand that. I'm not mad at God.
The problem is that I want to be there celebrating, too.
Why should I have to stay here when my baby is in heaven?
That's where I am right now and what I'm trying to figure out. People can tell me all they want that I "have a purpose" and "I will do great things for EB."
And maybe one day I will.
But right now- it's just hard to wake up every day and actually survive...
Much less do anything productive.
I feel like I'm walking around life-less.
My only goal now is to get to Heaven.
And that can't happen fast enough.
Tripp's beautiful butterfly garden, planted by Grammy.
Oh, how I miss those big brown eyes...
And these precious feet.
And what I wouldn't give to be able to hold these hands in mine again.