full circle

 

My head is swimming. I feel like I am in a room without a vacuum. Like I am trapped behind glass and I can’t get back to the real world.

Because today I was terrified I was going to come full circle.

Jonathan. He just started kinder and just turned 6. Jennifer. She started kinder and then her eyes started to change. One started turning inward. Subtle at first I though she was doing it on purpose.

His eyes are changing now too. He just turned 6. He just started kindergarten.

I tried to avoid noticing. Tried to pretend it wasn’t happening. But it is. Tony and I never talked about it. Other than me telling him not to get mad at him for it. Not to scold him since I knew for sure it was out of Jonathan’s control.

But last night in the middle of the night feeding the baby it was too much for me to run from. I decided to call today. Push to get him in today. I picked him up from school.

her school.. his school .. their school..

I told him where we were going and immediately he got upset. “No Mom no I don’t want to go. ”

 

She always comforted him at dr appointments.. He needed her
She always comforted him at dr appointments.. He needed her

Does he know this part of her story? Is that why when we would remind him to try to relax his face he would insist he wasn’t doing anything and change his face a different way? Has he been scared?

We got there. I parked. We eat in a nearby restaurant and I never let Tony park on that side. That’s how much I hate that place. But I know they are good.. and local..

I remembered everything. Parking next to the bush filled with bees. Remembering how nervous she was to walk past it. I remembered as I got out the snap and go stroller … it was like a vortex of the past and present swirling together.. I got 4 kids out of the car and we went in.. I remembered doing exactly that almost 2 years ago.

We were taken back. I helped him hold his head still. He was shaking. I wasn’t. I was sucked in… barely breathing. Because I knew if I allowed myself one deep breath I would break apart. Break open.

We went further back. The same room. I remembered the pictures on the desk. He sat in the chair.

Same uniform. Bright blue shirt and navy bottoms.

I was so not worried I took a picture of her... first eye dr appointment had to remember it I thought
I was so not worried I took a picture of her… first eye dr appointment had to remember it I thought

I wonder if I was able to hold but the fear in my eyes?

Before she left the nurse said the dr usually likes to see the kids alone. I told her no. She left the room and he looked like he wanted to run to me… i noticed his dirty hands gripping the seats and he searched me with his eyes. He said “please mom I don’t want you to leave me in this room alone” I told him I most certainly wouldn’t. That I might step out to explain it to the dr for a minute but I would leave the other kids with him.

“You are mine son. This I get to decide.”

He seemed to relax a little. In the back of my head though I feared.. I remembered how often things happen that I don’t get to decide. How often I had to leave her..

 

This was the closest I could be to her
This was the closest I could be to her..just a little girl in princess socks..

I quickly told the dr our history out of the room. I couldn’t be sure what Jonathan remembered and didn’t…

During the exam Nicholas was silent. He sat and watched and only moved when the dr blocked his view. Im not sure if he knows this portion of Jennifer’s story. That I thought she would need glasses so I took her to the eye dr who then sent us to a specialist who sent us to get a MRI..

But I know he distrusts drs when it comes to those he loves. I know he intently watches wanting to know is happening.

I wanted a problem. Near sighted.. far sighted..  I wanted to be sent home with glasses.. Ironic since I was so worried nearly 2 years ago about the potential for her to have glasses.. But today I willed there to be something.. Something to explain the sudden squinting. But he checked out fine…. She did too..

She did too..

We weren’t referred out to a specialist this time though.. So likely he is just fine. .. And he seems genuinely relieved.

I am not though. I am shaken. This shook me. Scared me. I am locked away .. somewhere deep inside myself. Like so much of me is in turmoil inside I am distant from today.. removed from my right now. Unable to connect…

I don’t trust myself to know what to do. What the right thing to do is.   I’ve always known what to do. ..I think he is ok. I should just let it go. But what if I am wrong? There is no gut feeling..

I need to talk to Tony about it. But I feel like saying the words might make it real. Like it might breath life into the shadows. .. Like all cancer parents I am not scared of the “what if” but rather the “what did”.

Today I was terrified I was going to come full circle. I’m not… we aren’t.. but its hard to shake that level of fear.

jennifer i am scared

i don’t know what to do

forever probably.

i am forever scared.

DSC_0087…until there is a cure..

 

 

21 Responses to “full circle”

  1. Tears in my eyes tonight for you and your family. I’m so sorry that you have to forever endure this stress and pain and sorrow. I am still here reading, following and spreading the glitter. Love4jlk and your whole family always.

  2. We now know that we are not immune to the loss of a child. It doesn’t just happen to other people, it happened to us. And we know we are not immune to it happening again. That’s not how it works. I wish it was.
    Our circumstances are very different, but I just wanted you to know that you’re not alone with your feelings.

  3. Libby, my heart goes out to you. The state of shock and likely PTSD from the truly unthinkable. What no parent ever wants to think of, was made so real for you. I want to say, I understand, but there is no way that I can. Sending you love today and always.

  4. omg!!!! My heart sank! I soo get it!!! Please stay string and pozitive through this and take him in in a few months too. The squinting is something many of us have just naturally, me included, as a result of a sensitivity to light. Much love to u, Libby! Hugs!

  5. I was holding my breath while reading…and the good ending came along: he is fine. Remember when you explained to him how he can not get the cancer from Jennifer because they don’t have the same genes? That’s what you need to think of and stay positive. He is fine, now his mom needs to take care of herself. Xxx

  6. Yeah….I have two that are going through problems that just are not “normal” and I’m scared. One has a lump on his back being removed, and a daughter needs an MRI because she’s lost her sense of taste and smell (our son had a brain tumor)
    There’s no such thing as “normal” illnesses anymore. That fear will always be in the back of our mind….childhood cancer is not rare…..

  7. oh honey. That’s horrible. It was way too similar!! I still cannot go to Santa Teresa Kaiser because that’s where my brother passed out ( I thought I lost him) and where I went after Lynn died (my friend) to see her one last time and see her kids and husband grieve. Some things are too in our face. Thank you for being real, sharing your pain and fears. And for putting words to things that others experience but don’t have the ability to even begin to describe. You help me and you help others by sharing yourself. You make good out of your pain. You are very special. I love your family very much and I will always watch over you and feel protective over you.

  8. Just to comfort you, can you request them do an MRI so that you are reassure. You have every right to be concerned and that may allow you to move forward.

  9. Oh Libby,
    I felt your pain and your fear while reading this…and I was only reading. I cannot even imagine what it was like for you with all of the similarities from 2 years ago. I will continue praying for peace and health for you and your family. Stay strong mamma!

  10. Libby, I could cry reading your story. Your words took my breath away. I am so proud that you didn’t let them keep you out of the exam room. You are your children’s protector and no one can take that away from you. You are an inspiration to those of us who have been following Jennifer and your beautiful family. God Bless. 💞💞💞

  11. Oh Libby, and I just read your previous post about Bridgette, feeling your joy, your joy tinged with grief. Push for whatever you can push for, medically. Someone said you could request an MRI. If you can, do. Whatever helps your family keep stable. You guys need extra support coping and I hope you get it.

  12. I cannot believe you went through this. Such terror…I am shaking my head with disbelief, in tears … not fair for you to worry about him as well. Fierce hug for going through it, and admiration for your wanting an answer and going straight there.

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