Now and Then

Photo by:  Judy Barranco

Recently, I have been really thinking about the now and then.  Now and then meaning life and death.  I cannot lie, it is deeply horrifying to me to even phantom and it bothers me just as deep to think about.  Recently, I saw a post shared on Facebook from Mombie Needs Coffee titled “Will I Die Before My Special NeedsChild…”   It made me go back and read my own postings from 2014:  “Life Expectancy…Do you wonder? Do you ask?” and “Not all moms share the same secrets”.  About a year after those posts, my mom passed away suddenly.  I remember standing in the waiting room at the hospital after she was gone thinking, “How could I explain this to Kerstin?”  “Will she understand that she would no longer see her Granny?”  Even when we are fondly looking at pictures of mom, I wonder what she’s thinking, seeing her in pictures and never seeing her in person even when we have family gatherings. 

By now we have all seen in the news recently the coverage of the helicopter crash that killed Kobe Bryant, his daughter and 7 others.  They were parents, they died with their children and even left children and families behind.  My thoughts go out to all the victims and their families.  This tragic event got me to thinking once again about now and then.  Hearing of the parents onboard, dying with one of their children.  I thought of them having partners or spouses and possibly other children at home.  That meant that those left behind had another to look after the other children.  It also made me think about single parenting; what if one of these people were a single parent and left a child to be cared by others. Or, if they had been single with only one child and their child was onboard that flight too. 

I do not know if it is natural to think like I have for so many times, that whenever that times comes, I do not want to be left without Kerstin and I do not want her to be left without me. Sometimes, I just keep selfishly thinking that the two of us dying at the same time would be better.  Better for who?    For that to happen, it would probably be sudden and tragic.  That ending would be one that is sure to devastate our family and friends.    

You see, I cannot imagine a life without Kerstin and I cannot imagine her life without me.  Will she be cared for the way she is used to?  Will others have the patience and understanding that I have grown to have.  She needs around the clock care for all her daily living needs.  I will not lie; it is no easy journey. 

I know that this is not something “typical” families think of on a regular basis if, at all.  They may not even prepare beyond wills and life insurance in the event of their own demise.  Raising a child with special needs leaves parents thinking of the daily to dos of doctors, specialists, school, therapies then there is their life insurance and that of the child,  wills, guardianship, power of attorney and quite possibly some things that I cannot even think of right now. 

We want to make sure that they enjoy and are good and kind beings.  We do all that all that we can to make sure our children are loved and cared for. Life is for living- the easy and hard.  We must navigate the hills, curves and valleys as we approach them.      

Photo by: Judy Barranco

More to come...

Coming from the heart!

     We've all seen what has been in the news as it pertains to healthcare.  The United State House passed their version of a healthcare bill back in May that will take away the healthcare of millions of Americans. The bill would drastically cut Medicaid, which is the sole form of health insurance for so many.  In other cases, it is a secondary insurance for many families that receive their health insurance through work and other forms. Now, we had the Senate republicans release what they are calling the Better Care Reconciliation Act that will be just as devastating to so many people and not just those relying on Medicaid.

     Everytime I think about the potential cuts to Medicaid and the affects it could have on not only my child but others as well, I'm reminded of what Jim Carnes of Alabama Arise said as it relates to Alabama.  He said that the state itself can be considered to be on Medicaid; if you have doctors leaving the state because of cuts.  When that happens, my child isn't the only one affected by that pediatrician that has left but, the one that is on Blue Cross is as well...as it may be the same doctor. Lets look beyond the doctors and look deeply at the overall affects.

     As you all may already know, Kerstin has a feeding tube, and it is the only way she gets nutrition, and her medicines to live.  All of her medicines, feeding tube(s), extensions, syringes, nutritional formula, gloves, diapers, wheelchair, bath chair, hand splints, neck support(s), AFOs, therapists, specialists, glasses, dentist, ophthalmologist,nutritionist and so much more is covered by Medicaid.  Completely covered!  If it was not for Medicaid, these costs would be devastating on our family.

     Recently, I had to do some paperwork after changing medical suppliers for Kerstin and the forms I needed to sign came with a complete breakdown of the cost of her feeding supplies.  Per nutritionist, Kerstin is to have 3- 8 ounce boluses of her nutrition and 1- 6 ounce bolus; the formula comes in 8 ounce containers that cost $9.33 per container or about $224. 00 per case (she gets 5 cases per month), her bolus syringes cost $650 per month, the feeding extension costs $100.00 and the 'button' (feeding tube) costs $300.00.  These costs DO NOT include any of Kerstin's medicines.

     Now, as titled "Coming from the heart!", I am coming from my heart with this entire post.  We've all heard and some may have even said things like "Medicaid shouldn't be given to the lazy", "these people need jobs" and so much more.  Well, I'm not lazy, I can't be, I have a daughter that is completely dependent upon me for her daily living care, even on days when to quote a line from "The Color Purple Musical", 'I wanna sit and do nothing', I can't.  I can't take on a full time job outside of our home because of her needs and care.  I have a part-time job and I am also continuing my education online.  Kerstin is a minor child on Medicaid...know any jobs for her?

     Kerstin's life depends on Medicaid.  Without it, she would not have had the medically necessary surgeries she's had, including the g-tube surgery that I fought against, out of my own fears.  Kerstin is thriving and surviving because she gets the much needed care provided through Medicaid.

     It's not too late to make your voice heard about healthcare!  Call, text, write, tweet and do it again!

#IAmMedicaid

A letter to Kerstin

     The mere thought of this post bought tears to my eyes.  It is about the inevitable, that one thing that no man can escape.  No matter the exercise routines, the meds and vitamins we take daily; they may aid in prolonging and making this life a little better and healthier.  They just cannot keep us here forever.  Death is that thing we will face and we can't get around that. 

     I must admit that I have selfish thoughts when it comes to death.  Since Kerstin came into my life 13 years, 1 month and 11 days ago and my entire outlook on life has changed forever.  I cannot imagine my life without Kerstin and I can't even comprehend her living a life without me!  One of those may happen, sadly.  Back to my selfish thoughts, I have prayed at times, that when that time comes, that it be in a manner that we could leave this earthly home together.  I can't imagine the heartache it may cause my family but, it can't possibly compare to that of Kerstin or myself to have to live without each other. 

     

With Kerstin in Selma at the Edmund Pettus Bridge

     So, I thought about writing a letter to my sweet daughter. 

My sweetest Kerstin,

     I have loved you more than my own life.  You have meant the world and more to me.  Words can't fully express the love that I have for you, my sweet girl!  This journey we have been on together has been one of many ups and downs, some pains but great joys.   When I was pregnant with you, I imagined a life much  different than the one we have lived.  

     I hope that I have shown you a smidget of the love that I have for you.  I have loved the cold winter days when you didn't got to school and we sat watching whatever animated, you not wanting to share your blankets.  I have loved taking you to the movies and you ignoring me completely once the lights went down.  I love the way you stare at me until I looked at you only to poke your tongue at me.  Your laugh, I just love hearing you laugh so hard that you begin to shake.  

     Kerstin, you made me look at life differently!  Before you, I never thought about things like accessible parking, hand rails in bathrooms, ramps, inclusion and so much more.  I never knew that I would be required to do and learn so much in order to take care of you.  I would not change any of the things we have endured together.  The many surgeries and hospital stays only made us stronger!  You have been a true example of strength and courage sweet girl. 

     I love you darling!  No one can say that I didn't do what I could to be a voice for you.  You have been my life!  We are forever together!  

Loving you always and forever,

Your Mommy!


     So, I can only hope that, if I should leave this place before or without my daughter, someone would read this letter to her and continuously remind her that her mommy loved her to no end!  

December 17, 2001

     Kerstin was on her way to change my life in more ways than I could ever imagine. I don't know what I can say that hasn't already been said about my love for this little girl that has done amazing things in her now, 13 years of life!  Kerstin has and continues to touch so many hearts with that big, bright smile of hers.  I've told my family on several occasions that Kerstin has this ability to make people love and want to be around her,

     Last year, I wrote the post "We Met!" I was excited to meet this person that was growing and moving inside me.  I was  happy to see the person that I would be "mom' to.  December 17 is a day that this momma cannot forget.  I couldn't believe that I was to be someone's mom and now, I cannot believe that she is a teenager!!! 

     Kerstin knows that she is loved and cared for by so many people.  She has a big day coming up!  Glad she is feeling better, we are skipping school and going out, then she has to go to her cousins school for their Christmas program.  Friday, she is going to see "Annie" on it's opening day.  Saturday; a big day is planned...an awareness party, celebrating KERSTIN!   Pictures will come later. 

   So, to Miss Kerstin, just an ever so gentle reminder, using the words of Bruno Mars:  "When I see your face, there's not a thing that I would change, cause you're amazing just the way you are..."
You are amazing girl...this is your day.  Happy Birthday, I love you so much my princess. 

Happy Birthday Kerstin!

Cerebral Palsy Awareness Day...not just a day!

     I hope you have on GREEN!  Today is World Cerebral Palsy Awareness Day!  What does that mean?   Awareness to those that don't fully understand Cerebral Palsy.  Awareness to let the world know that more and more people are both with Cerebral Palsy and countless others are diagnosed with it every day.  What do you know about Cerebral Palsy?  

     Don't worry, Cerebral Palsy is not contagious!  Cerebral is of or pertaining to the cerebrum of the brain.  Palsy or palsies are muscular conditions that are defined by tremors of the body parts.  There are three types of cerebral palsy:  spastic, which causes muscle stiffness and difficulty with movements;  athethoid, causes involuntary movements and ataxic causes problems with depth perception and balance.  So, there is no catching any of those. 

Cerebral Palsy info

      For so many families, mine included, Cerebral Palsy is not just a term, awareness day is not just like any another day, it's life.  We live and battle each day.  These battles include those stiff muscles, seizures, wheelchairs, countless doctors, therapists, specialists, medicines, hospital stays, surgeries and many sleepless nights.  I haven't met a parent of a child with special needs that don't understand what I am dealing with and they have faced some of the same battles or they are about to.  Connections are so important. 

     Along with the struggles and the battles, there are immeasurable joys that come along with raising a child with special needs.  I know that raising Kerstin has changed my life in ways I will never be able to fully explain.  I am more patient, having to speak up for her has bought out the advocate in my...that voice that will speak for those that cannot do it for themselves.  I will type/write too!!  I am not only Kerstin's mom, I'm her advocate too!  She has forced me to grow and become a better person. 

My reason!

     So, as the world is made aware of Cerebral Palsy, I encourage you to follow some of the links in this blog post.  Read up on Cerebral Palsy and gain a better understanding of our loved ones living with it each day! 

Cerebral Palsy: Kids Health

World Cerebral Palsy Awareness

My first blog post:  Life!

More to come...

Does she live at home?

     "Does she live at home?"  When you take your children to the doctor or they have been admitted to a hospital, do the doctors and nurses ask you does your child live in your...their home?  I cannot count the number of times I've been asked that!  Every time I'm asked, I always get a little bit upset.  I often wonder is it because of Kerstin's disability.  Could it be because she is now 12 and cannot do anything for herself?  Could it be the fact that I am a single parent to a child that needs care around the clock?

     Whatever the reason, I think there should be a way of knowing that bit of information without having to ask the PARENT that is sitting right there with the child!  I am pretty sure that if a child is being admitted to a hospital from a nursing facility, that information is readily available on forms and identification!  

     Just this year, back in February, I had a doctor ask me, if Kerstin lived in our home?  YES!! The questioning went further, do you think you will be able to continue to keep her in the home?  I was thinking to myself, "Do you ask other families this?"  If their child can walk and talk and do for themselves, are they asked these kinds of questions?  I told him, "As long as I'm able to do for Kerstin, she will live in HER home!"

     Do you ask or wonder if your friends and family members with their so-called "typical" or "normal" children, if they will keep them in their home?  Do you think you will be able to keep them there?  If it is not a thought that has crossed your mind, then think about that friend that has a little girl in a wheelchair, she can't walk, talk or do the things her peers are able to do.  How many times do you think she's been asked if her child lives at home?  What about the times doctors, nurses and others have wondered how long the child will be able to live at HOME?  

     It happens more than you realize or care to think about.  It hurts to be asked those questions!  It hurts to think of your child not being able to stay in the home they have known.  Some decisions are hard and they have to be made.  That is up to the individual's family, when and if that time comes.  For now,  as long as I am able, Kerstin will live in the home she's been in for 12+ years!

"There is nothing like staying at home for real comfort" 
~Jane Austen

Life Expectancy...Do you wonder? Do you ask?

     This past week has been interesting, to say the least.  In one of my classes, the discussion of "Life Expectancy" came up when we were talking about chromosomal disorders.  My instructor posed this statement and question to the class:  
" It is natural to want to know the life expectancy of the child after the prenatal testing or diagnosis after birth? I think this is interesting, because in all honesty we never know anyone's real life expectancy. Ok yes, there is the standard life expectancy for any person born that is issued by scientist/ physicians. But in reality, it has come to mean very little in my opinion. I say this because when I watch the news I hear of young children, teens, and young adults that die everyday from things other than medical issues. Yes, the disorder would be a factor in how long the child may live, but in this day and time there are so many other factors, that can and cannot be controlled, that affect life expectancy, that I feel the life expectancy based on a disorder doesn't mean much at all." (Crawford, 2014)

    The discussion and the events following, really made me think!  Is it necessary for me to ask, do I really want to know?  My response in the class was that although Kerstin does not have a chromosomal disorder, she is diagnosed with Cerebral Palsy as well as Epilepsy (often reported in chromosomal disorders but it is not one alone).  I have never asked doctors about "life expectancy", none of the parents that I've come into contact with along this journey has ever talked about it.  They may have asked their child's doctor but it is not a common topic.  

     The talk of "life expectancy" never came up, even during the many surgeries Kerstin has undergone.  Her last surgery was intense,  she would need more anesthesia, and would be under for well over 4 hours, which meant it was 9 hours before I saw her.  That was scary yet, survival and expectancy never crossed my mind. 

     During this discussion, I also stated that I am always so thrilled when I seen teenagers, adults and seniors with Cerebral Palsy and other abilities.  I see hope!  I see fight!  I see encouragement!  We can listen to doctors and other scientists and we can take test after test...no one truly knows their "life expectancy".  Looking at genetics, my grandmother was in her 90's when she passed away a few years ago, one can only hope to reach that.  Like my instructor stated, people unexpectedly die everyday.  One statement I'll never forget from my Partners in Policymaking course;  having a disability can happen to anyone and at anytime, people aren't always born with a different ability...sometimes it happens. 

     So, just yesterday, I was feeling really bad with a stomach virus.  I could barely hold my head up after staying in the bathroom most of the night and morning.  I had texted my sister and told her that I was not feeling well and needed to get some Ginger Ale and Powerade, she told me that she was going to get the items for me and that she would get Kerstin and keep her for the day for me.  I was so thankful for that.  Watching my daughter leave with my sister bought tears to my eyes!  My stomach was hurting so much, I was so sleepy and needed that help at that moment.  I couldn't help but think about "life expectancy" once again.

     With no guarantees and no certainty of how long...I could easily leave this earth before my daughter!  What then?  That scene I just saw leaving our home, is what I deeply believe would happen.  I truly believe that my sister would step right in for my daughter!  That's what I want!  This is really hard to write because I am the only parent involved in Kerstin's life.   So life expectancy is not something I am going to dwell on.  I want to live, enjoy life and be all that I'm able to be for Kerstin!
     

L O V E

Crawford, Adrianne, 2014.  Life Expectancy.