I am old enough tohave several "where were you when?" events in my life. Some personal, some national. All life changing.
John Kennedy's assassination
First Moon Landing
9-11
Cancer Diagnosis Day
Death of Father Day
Cancer Relapse Day
Transplant Day
Most are not days, most are moments but they forever change the landscape of our lives.
Some times we don't realize the significance of a day or a time until long after it happens. We can look back with great clarity and find the moment in time. The moment we should have known, the moment we could have known the seed was planted.
We have many significant moments, hard impact moments, Lasts we did not recognize at the time. We think there are going to be lots more chances and lots more days.
I know I look at things differently. I am much more concerned with this very moment. I have seen too much to not be.
I know there are limited tomorrows and no certainty. The moment of noticing the single humming bird as it locates a still juicy trumpet flower while the sun reflects off the feeder.
We must never forget but we also have to keep going. No matter how much chaos there is in our lives, the world keeps going forward. See, I started this post on September 11 and now it is September 12th.
Hoping for only good memory event creators.
There is so much about the human body we don't understand but lots we do. We are fragile. We are tough. We have lots of back up systems. If something is not working right we keep on trying to work it out one way or another.
Sort of like Meb's weird lung stuff. They found something in her lungs at her two year follow-up. 25% drop in her lung capacity. She had not noticed because she was just breathing faster. She is stable but her body seems to have compensated. Kind of like her big blood clot in her Jugular Vein when she was first diagnosed. Her body had established new side vessels to get around the clot. Who knew ? The body is a magical thing.
Who knows how things will turn out for Lulu, her family is there letting her know they are waiting. While unstated, I am sure they are so afraid and worried and anxious. I do know all of this is a process. Getting better or not, is not something dramatic or earth shattering. It is gradual. It sometimes starts with just a twitch or a voluntary movement.
Lulu's sister is waiting for the sign she is coming back. Hoping something will let every one know there is healing beginning to happen.
Lulu is still the same...kidneys now are not working and pupils still blown and unresponsive they did a eeg to check for seizures but she is not having any...they have stopped her sedatives to see if they can get any type of response. ....her sister Payton has been holding her hand for hours in hopes to feel movement...she misses talking to her sister and this picture says it all....please lulu...give us a sign
Oh, a million of hearts are breaking. Lulu's mom has been sharing what is going on. I think that even though we don't know each other personally, we know each other as Cancer Mom's. I have never had to watch or do what she and her family are doing but it is something that feels so close and so personal and is so real. Again these kids are so fragile.
When your child is first diagnosed you are given some rules. Lots of them you can break. Not taking a child to the hospital with a fever is the one that will get you into so so much trouble.
Hoping for a good night. Knowing the Universe is a powerful and mighty thing. Still, from my little corner of the world, this is heart breaking... heavy sighs... deep dark place of sadness.
Here is the latest information.
Lulu Ysarua Martinez is on 100 percent life support now being taken for a ct scan due to both pupils fully dilated checking for bleeding on brain due to crashing this am and being without oxygen no improvement on lungs. ...oh my beautiful lulu mommy needs you to stay strong I need you to fight like hell...stay strong the doctors are doing everthing they can I need to see those brown eyes I need to hear you say mommy...hold on I'm begging you....
Sometimes it is hard to make the shift. Sometimes we have so much on one plain we don't see the other side or have another view of the world.
I was reminded of this when I saw this picture. I clearly stole it from an amazing photographer.
Are we coming or going? Beginning or end? Start or finish? I guess it is the old "To Be or Not to Be? That is the question.
I think I am so beyond the worry and concern. I think I can help other's who are starting the voyage but it takes just a moment, a note, a post, a call, an old picture, a question, a piece of paper to have it all come back in a rush. Classic PTSD. I wonder when it does go away?
Meb drove herself to the eye doctor today. She went to see Dr. Balter. The same eye doctor who found the swollen optic nerves 10 years ago. 10 years of our lives have passed since that fate filled day. 120 months 3650 days. One thing I can say is I sort of really know what has happened during these last 87,600 hours. Oh do I know what has happened.
Okay, so I have decided we are taking off. We are not landing, we are not sitting around on any old daisy and just waiting for life to speed by too fast. (Speeding is only for Iowa highways)
I don't generally "feel" my anxiety but I am aware that she is sitting on my shoulder. Her name is Juliette Pinette. She was identified as my invisible friend when I declared her presence at age two and a half. She was around for a while and everyone thought she disappeared when I was older.
I think she has always been here. She is the bad scary feeling when things are going wrong or we think they are going to go wrong. Sometimes a bad feeling, sometimes a twitch or a jerk just as we drift off to sleep. She is the one that really really likes ice cream and cake. She will eat other things if they are not around but cake. Good Chocolate Cake. Her very very favorite.
She snaps at people, she makes it so I don't sleep or she makes me just crawl in bed and go to sleep to shut off my brain. She has moments when she makes it so I can't breath or I must shop for things I don't need. She can be fun which explains why there are 8 quail eggs in my fridge ready to be made into tiny deviled eggs. (Don't Ask)
The last week Juliette has been particularly active and present. Mary-Elizabeth's port placement, some after port placement stuff that was weird and concerning. Rebecca is deteriorating, as dieing is a process and not an event. Her mom is having such a hard time. Other folks struggling. Just stuff. Or maybe I am just now able to "feel" the anxiety.
What I have observed is I can measure my anxiety by how long I can watch a show with situational tension. The "the music tells me something is going to jump up" or the ever present " main character is going to be caught and then the show will have to end" moments. There are situations in South Park that are too stressful.
I need to send Juliette off to play somewhere. Mary-Elizabeth is regaining her strength after a month of sick. I am back in school and figuring out this job thing. Rebecca is going to finish her journey and I can be helpful to Elizabeth for as long as it takes.
It is under control, it is going to be alright, in fact things should be more then grand. Lots to do tomorrow...
