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...

Our journey!

     I have not made a post since the Fireworks post back in early July.  Well, so much has transpired since July 4th weekend and the post.  I don't even know exactly where to start but, with everything, you have to start somewhere.  

     So, July 25th is where I will start.  That is the day of the Alabama Angels Pageant.  As I prepare this post, I realize that I have yet to open the email containing Kerstin's official pageant pictures.  They will come later!
The day was beautiful, it was a very hot day but it was so beautiful for all of the participants and their families.  Kerstin had a crew of supporters as usual.  The day was not only beautiful it was a lot of fun.  We got home and I just had to show my mom and oldest sister the pics from the day, since they didn't attend.  First I had to get Kerstin settled and into something cool and comfy.  Blessed to live next door to my mom's I walked over to show her the many pictures from the day.  

     Mom was so excited to see her youngest granddaughters hanging out with Kerstin on this beautiful Angels Day.  We took pictures from the arrival at the church, Kerstin changing into her formal dress, getting her hair fluffed by my sister and Kerstin's Guardian Angel, to make up and definitely on the stage.  It was a thrill to show my mom.  My regret about that afternoon, I didn't take Kerstin into my mom's; Kerstin was so tired and hot, I wanted to her to relax a bit.

Pageant ready; Snowflakes and Dreams

     The next day, July 26th.  I am up on my Sunday morning routine of checking on mom, she is already in the kitchen about to have breakfast.  So, this is where we will sit and chat about Kerstin, the pageant again and life...whatever comes up.  We sat for a long time that morning talking, mom asked me to help her get back in bed before I left.  She said she wasn't feeling well and wanted to lay in bed for a while.  About an hour later my mom was being rushed to the ER by my youngest sister!  Almost 2 months later I am still numbed by how quickly life changed that weekend.

July 27th at 9:25 a.m., I stood outside of an ICU room and watched things I've only seen in movies and on TV take place and finally hearing a doctor say "Time of death" and was talking about the woman that knew me best, the one who instilled so much in me, who took care of me and my child!  Those three words signaled the end of her in the physical.  

     As we sat there trying to come to terms with things, I felt the urge to walk around to the therapy center where Kerstin goes to cancel her appointment that would have been that Wednesday.  As I was walking, I bumped into one of the therapist and she stopped and asked if I was okay? NO! She told me after I informed her of what was going on, that anytime she hears the "Code Blue", whatever she is doing, she always stops and says a prayer for the patient and family.  This time she said, she had no idea that she was praying for Kerstin's family!

     Not only did I feel the need to cancel therapy,  I also questioned how could I tell Kerstin what was going on and that she would not be able to see her Granny anymore.  How could I do this in a way that my child would understand?  I still don't know if I have done it in an okay way.  I have shown her pictures and videos yet every time we go to Granny's house, Kerstin always looks at that chair where she would be sitting and it breaks my heart to know that she is still looking for her! 

     We are almost two months into this new reality and it still seems like it is July 27th.  So, our journey now includes grief and many firsts.  I just had my first birthday without getting the one call/birthday wish I could count on even if no one else said anything, that was extremely hard as well.  We are still growing on this journey! 

Our angel, may she rest well!

 An update on those fireworks and seizures is coming next...

G-tube journey

March 28 will be one year since my little one has had her gastrostomy tube or G-tube placed.  Since that time, Kerstin has double her weight (pics will come in an anniversary post)!!

When I say that it has been a journey, that is an understatement.  I must say that I have yet to change her port/g-tube.  I am too queasy!  I always get my sister (who is a nurse, thankful mom here).  I don't know if I'll ever have the nerve to ever change it.  Seeing that little "unnatural hole" on her belly.  I know it's there for health reasons but, I don't know...

Since we've become g-tube aware...I think just about everything imaginable has happened when it has come to g-tube boluses and the continuous feedings overnight.

Here we go:

I'm doing a bolus, Kerstin starts to laugh at something on TV...Pediasure is everywhere!  That happens with sneezing, coughing even gas, contents come back like an erupting volcano!!

I start a bolus, the extension line is open and nothing is moving!  WHY?!?  The cap is on the tip of the syringe!!!

How about a newly changed port yet, the bolus is moving really slow, what is wrong?  I panic and call the doctor!  The nurse calmly tells me to give her a little room temperature Coke and let it stay in the line for about 30 minutes then flush.  That simple?  Yes, the boluses moved much better.

Getting all set for continuous feeds, meds are given the pump is started...ten minutes later it's beeping!!  The line is NOT opened!!!

Or, the next morning after the continuous has ended, she's given her morning meds...I can not for the life of me get her extension to disconnect from the feeding bag!!  I had the strength of Wonder Woman and twisted it on really tight.  Come morning, it wouldn't budge.  I had to throw it away.  Thanks to the collection of medical supplies we have on hand, she has a stash of them.

I've left home before and left her water bottle...quick stop at the nearest store to buy her a non-refrigerated bottle!

I can not forget in the beginning, we are not home, once at school and once on a day we were just out and about, no extension set to feed her!!! Thankfully we weren't far from home.

I know I'm forgetting something.  All that to say, I was originally afraid and completely devastated that MY daughter may need a feeding tube, then getting to the point of not a maybe but, she has to have it!  I am thankful for the journey, she has gained weight, and she hasn't been as sick as often as she used to be.

The tube/ port and the extensions HAVE to be kept cleaned.  There's no getting around that!

Resource

More to come...