Stuck in the middle

💜 I’m stuck in the middle of being disabled but still appearing as an able bodied individual.

💜I’m stuck in the middle of living a great life & why is my life so difficult.

💜 I’m stuck in the middle of trying to be productive in my day & too much will have an impact on tomorrow.

💜I’m stuck in the middle of depressed but still so full of joy. 

💜I’m stuck in the middle of planning for my future and still living like tomorrow isn’t promised. 

💜I’m stuck in the middle of complicated disease but great patient. 

💜I’m stuck in the middle of knowledgeable about CF/ transplant and not having a clue of why I feel the way I do, and goi ‘n what the heck?!

💜I’m stuck in the middle of being in pain and being in pain and not showing it so people don’t judge me. 

💜I’m stuck in the middle of being Jessica and Jessica with CF and a double lung transplant.

It’s been a month since…

My dearest Uncle Larry

It’s been one month since you have left earth and your earthly body. I’m not going to lie to you and tell you it’s been easy. It’s been hard on all of us. To sit in your house and you not be there is difficult. Much more difficult than I think we expected. It’s your home but know it’s starting to feel like a strangers house. 

We miss you and your sense of humor, the way you constantly showed up with something to give, and us teasing you about it. We would say “Mom’s going to be mad at you” and you would casually say oh well. Cleaning out your house has been therapeutic and also emotionally draining. The things you loved and what was important to you was so obvious. Your love for QVC really was obvious you loved your temptations and lock and lock. We cleaned things out together, usually laughing as we are trying not to cry seeing some of the things you had..usually you had multiple things. Why did you need 4 waffle makers? and about a dozen fans? But we enjoyed being at your home and I’m sorry we never got to have dinner like I told you we would but we ate at your table and I think that would make you happy. 

I know you are with Kenneth and it probably feels really good to be together after 24 years of being apart. I hope you tell him all about us and let him know everything that has been going on since he left. I hope you found Grandma and told her about us all down here and how her memory is still alive and strong. 

It’s hard to look back and think of how important you were/are to me and Aaron. How in so many ways you were our “Grandpa.” You were always so loving and kind and generous. You were mischievous and funny. Did I say generous? Well you were so generous I have to let everyone know 2x. 

I find a lot of comfort being at your house and it breaks my heart to know it won’t be available for me to go sit and reconnect with you whenever my heart and body need to be close to you. Instead I’ll have to find another way. 

When you were in the hospital I always told you how proud I was of you for fighting so hard. Cause you held on for a long time. I told you everyday how much we loved you and wanted to take you home. I let you know Aaron and I always loved you and never for a minute did we ever doubt your love for us. 

It brings me comfort to know when I get to heaven you will be pushing everyone out of the way to get to me first. I picture that first embrace and it eases the fear of going before everyone knowing you will be there waiting to introduce me to everyone who has been watching me. 

I know you’re with me still, I feel it in my heart and in my bones. The little reminders are perfect and always make me smile. I told you we would take care of Mom and we will always keep our word. She is the most important lady to us all. 

No matter where we go and what we do it will always feel like a piece of our hearts and our family isn’t with us. The impact you made in our life is so huge no one or nothing can patch that hole in our hearts. Thank you for loving us unconditionally and accepting all our chaos and craziness. We miss you, we will never stop missing you, and we will keep you in our hearts. 

 

Aloha  Bird Legs aka Jessica 

Late night hospital thoughts

Even in the hardest moments, I’m overwhelmed with gratitude. I’m so thankful for the love and support. The prayers that lift me up and keep me steady when I feel myself getting weak. I’ve been impatient for approximately 24 hours and have had five pokes for iv. At the moment, I have a successful IV and one that could go any minute. And if you know some of my struggles with my health and through the years,you know how difficult these IV pokes can be for me, especially emotionally.

I get concerned by the fact that it’s so easy to be this other Jessica. To be the one who’s constantly taking notes, watching what comes in, and who comes in. Are they dressed in the proper protocols? Why are they here? What team are they from? What are their concerns that they’re looking at that I might not be looking in the same direction? It’s also moments of being that Jessica that my Nurses on 2 West remember, who is observant, polite, and constantly trying to make the best out of this situation, knowing we don’t know truly what the outcome could be. What I mean by this is more of a sense like are we finding the answers to questions we have been asking for so long about the shortness of breath and the pain.

Even though this is not exactly the place, I would like to be. I’m so grateful to be here at my home away from home, 2 West at UCSD. I walk in and I’m welcomed with open arms, with love and compassion, and even some laughter when we get a moment. They have kept me busy with catching up with each other, showing photos, and just giving life updates. Anyone who has been in a situation somewhat similar to this. They will tell you that this form of medicine ,the love,

 the laughter. The compassion in many ways works wonders on your mental health, which can correlate to your physical health. 

I’ve watched my body do amazing things to keep me alive, and sometimes it’s just mind-blowing how much it can handle. Even through the moments of frustration, anger, and even fear, I have this mindset that everything I have been through, every poke, surgery, even celebrations,this is exactly who I’m supposed to be. I have to believe that at the moment.

Thank you to every single person who reached out and said they are praying for me and a Wii k recovery and the ones who simply asked what can I do to help you. It is a beautiful thing to be surrounded by love.