How Do You Measure a Year?

first time holding my baby by myself 3 long months later

A year ago today I was nursing my sweet chubby toddle-baby. I unfortunately got into a plane that would malfunction & fall to the earth but fortunately my baby did not step one foot on it. I fought through coma, confusion, broken bones to be back with my sassy now toddler. Medical bills are suffocating & a brain injury does not make life easy but I'm here. News Report

Right after the accident it broke my heart reading "Are You My Mother" to her thinking how she was that scared little bird looking for her mommy. I no longer tear up while reading it but do when my sleepy child whispers "are you my mudder?" 

Yes I worked hard but I am pretty much a miracle because of all those doctors (especially the one who's yard we landed in) and YOU! You all helped, every single thought pulling for me, rooting for me, made the difference. How else can you explain countless doctors telling my family to say goodbye. I'm here, not whole & not "fixed" but alive which matters most. I'm thankful my child does not have to grow up with just pictures & stories to remember me by. I'm very proud of the person she is becoming.

"Seasons Of Love" from Rent just popped in my head, how fitting that it's been one year today. How do you measure a year? I know your child won't measure it by how clean or unclean your house is but will by the moment you've shared so put down that mop & if you have kids at home, pick up a toy (not to clean but to play) please for me for today play & snuggle those babies. You never know what tomorrow brings. 

Caregiving

Whether you are caring for a parent, sibling, child, friend or spouse...Whether the disease is alzheimer's, old age, an accident, autism or mental illness you may be suffering from the trials and tribulations of being a caregiver.  Interesting facts about caregiving found on the CDC website.

Family Caregiving: The Facts

• More than 34 million unpaid caregivers provide care to someone age 18 and older who is ill or has a disability (AARP, 2008).
• An estimated 21% of households in the United States are impacted by caregiving responsibilities (NAC, 2004).
• Unpaid caregivers provide an estimated 90% of the long-term care (IOM, 2008).
• The majority (83%) are family caregivers—unpaid persons such as family members, friends, and neighbors of all ages who are providing care for a relative (FCA, 2005)
• The typical caregiver is a 46 year old woman with some college experience and provides more than 20 hours of care each week to her mother (NAC, 2004).
• The out-of-pocket costs for caregivers who are caring for someone who was age 50 or older averaged $5,531 in 2007. About 37% of caregivers for someone age 50 and older reduced their work hours or quit their job in 2007 (AARP, 2008).
• Caregivers report having difficulty finding time for one’s self (35%), managing emotional and physical stress (29%), and balancing work and family responsibilities (29%) (NAC, 2004).
• About 73% of surveyed caregivers said praying helps them cope with caregiving stress, 61% said that they talk with or seek advice from friends or relatives, and 44% read about caregiving in books or other materials (NAC, 2004).
• About 30% said they need help keeping the person they care for safe and 27% would like to find easy activities to do with the person they care for (NAC, 2004).
• Half (53%) of caregivers who said their health had gotten worse due to caregiving also said the decline in their health has affected their ability to provide care (NAC, 2006).
• Caregivers said they do not go to the doctor because they put their family’s needs first (67% said that is a major reason), or they put the care recipient’s needs over their own (57%). More than half (51%) said they do not have time to take care of themselves and almost half (49%) said they are too tired to do so (NAC, 2004).

One of the most rewarding yet hardest things I have had to do in my life is to be a caregiver for a loved one. (and after reading these facts I know I am not alone) There are so many changes that can be very stressful not only on yourself but the whole family unit. Then having to deal with these changes and trying to figure out what to say and how to say it has become an internal battle so much so that sometimes you may feel that you're actually hurting more than helping. You notice that not only do your finances take a hit but your own health starts to decline from all the worry and stress...You start to feel broken...What to do?

Certainly I am not a quitter and always live in faith that things will get better with a whole lot of love and knowledge so thanks to google, the library and my family's help I am finding more and more resources to give hope and strength to caregivers.

A couple of websites that have helpful information is The Family Caregiver Alliance, Brain Injury of America, and CNS Center for Neuroskills.

A quote that was forwarded to me by my sister "I considered why it might be better to make a mistake---and learn from it ---than strain to get everything right" and another one   Hope lives on in the person that still believes. -Jeanne and some I found on pinterest     Helpful Books Caregiving: The Spiritual Journey of Love, Loss and Renewal Listening in the Silence, Seeing in the Dark   Brain Injury Survivor's Guide

A few things that I have learned throughout the process. Be a positive role model Remain calm in high stress moments Always put yourself in your loved ones shoes before you react Know your limits and ask for help when needed Keep the lines of communication open Find for yourself a getaway moment for example a trip to Starbucks, a favorite exercise class, or get lost in a book Have many levels of support systems in place, family, pastor, friends, therapist and support groups. You will need each and every one of them. Never don't ever forget that imperfection is perfectly perfect Please leave a comment if you have been inspired by any helpful resources and/or stories related to caregiving...Knowledge is Power.

Living Through Life's Tornado

...a continuation of my perspective on Kate...and so the tornado cycled...days had turned to weeks...ups became downs...highs became lows...Seven days passed...if Kate didn't wake up or start breathing on her own they would need to perform a tracheotomy...Was she going to wake up? Was this my sister's life? Slobbering all over herself hooked up to a ventilator...Oh no not my sister...One day prior to her needing the tracheotomy she stunned us all by starting to breathe on her own...She still needed oxygen but they would be able to put tubes in her nose for that...She passed the first hurdle...on to the next...Everyday that she was in a coma determined that her brain injury was more severe than expected...and on the ninth day she actually started to talk...What I never understood about a coma is that when someone wakes up it can be a very slow process and there are many levels of the coma. There is better understanding when you know of the Rancho Los Amigos Scale or the Glasgow Coma Scale...A precious memory I hold dear was on the fourteenth day into our journey My phone rang...it was my mom's number...she would call to update or just need someone to talk to so I answered...all of a sudden I hear "Hey Weaner"...OMG it was my sister Kate...it was a blessing she was definitely going to be okay...you see that is my nickname and she called me that all the time...Jeanne Weanie...My heart skipped a beat...I almost laughed but just acted normal and said "Hey sis What's Up"...She wanted to tell me that Ava likes apple juice...lol I didn't think she ever gave Ava apple juice...When I got off the phone I just broke down...Called everyone to share the story to bring hope to our dwindling expectations.

Remember the highs and lows...Well I visited Kate that same day expecting the miracle that I thought had happened...my sister was back...it didn't work like that...she was very agitated...incessantly trying to pull on the tubes or swing her feet off the bed...It is the hardest thing to explain and watch her go through...It wasn't Kate...at times she was locked behind her own eyes...Kate was starting to talk but it wasn't her...she didn't always make sense...She was almost just repeating things she had heard...she would think that Sandy was me, that she was still twenty one or that aliens had done it...Everyday her blood pressure and fever would spike constantly so much so we kept a fan on her at all times and constantly worried about long term heart problems...She was such a hard stick for getting an IV going for either giving her meds or taking her blood for tests they decided to perform a pick line.  That was great for a couple of days then that got infected and needed to be removed. She developed pneumonia in her lungs...a hematoma in her leg and an abscess around her spleen...her skin around the splints were getting sore...she developed pink eye from all the dirt around her eyes and a massive cold sore around the intibation tube...All we could do was trudge through this mess...Where was Kate? Would we see more glimpses of her old self? Would she be the mom to Ava that she always wanted to be?

Once her medical issues were under control we could get her transferred out of the ICU and truly as with all the miracles we encountered on this journey...She just began to heal...My mom will be able to expand on all of this as she was truly by her side twenty four hours and I hope to get her to write about what she went through...What I know was we were worried that Drake the Rehabilitation Center would not take her if she had to be restrained or if she worsened medically...and the rehabilitation center was the place she needed to be...at this point brain function wise she wanted Dad to come and get her (he passed ten years earlier)...then she would abruptly change thought and talk about accessories...We figured out that the accessories were the splints on her arms, her socks she was supposed to wear or the machines that would beep for no apparent reason...Needless to say she was like a toddler she hated them and wanted them off...she would express that she had to go to the bathroom so the process of getting her up would begin...unlock the restraints...scoot her down in the bed and off the side...steady her then shuffle...She would be so unsteady they put a portable toilet right next to her bed...and then the process would start...she would stand up and down and up and down and up and down for I don't know how many times without even going to the bathroom...just to get back to the bed and have an accident...My poor mother she already went through this stage with her and now all over again...Would this be my sister's life?  Oh no not my sister!

Things that can help when your loved one has a TBI...Boom box with relaxing music to drown out all of the beeps or to calm the blood pressure...A fan to keep body temperature down...Keeping lights out so the brain can rest (even shut the blinds)...Stimulating Kate at first only for a few minutes a few times a day...In her agitation stage we were not allowed to walk Kate only the nurses because she was so unstable...we had an amazing male nurse the last week we were still at Miami Valley Hospital who would walk Kate when she would become agitated...so helpful as it would wear her out and she would actually sleep...giving my mom and herself a much needed break...I didn't want her to get stuck on the word accessories so we would repeat over and over to her the words she couldn't find in her own brain...if it was splint, socks or machine she had to explain what accessory she was talking about...Talking even in the room while they sleep can annoy them...leave the room to chat and shut the doors to keep the hallway noise out...They need a lot of rest for the brain to heal.

Pick Me Up Tuesday

When we were researching frantically for anything to do with Tramatic Brain Injury (TBI) my sister, Sandi, found this amazing link to another family's tragedy that turned into a miracle.  I wanted to share because it was so inspiring to us...actually It was more than inspiring...it became our HOPE for Kate. 

Doctor saves his Wife's Life Twice


Alison Delgado Update