Just be her Mom? 

Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant special health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and spasticity, her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love. 

When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. There are no vacations or holidays. Even on those days, you, mom-caregiver are always “on the clock”. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits. 

Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

 Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

"One Small Ripple"

   

     One small ripple...ripples in a pond.  We have heard the expression that we are all connected in some way; our connections are intertwined in ways we may not even be aware.  Also, the ripple effect is often considered when we think of how one action can flow out to other areas and people around us.  Those actions can be negative or positive.  Well, I like to think of my daughter, Miss Kerstin as a ripple.  She is a ripple in a pond of so much love!

One Small Ripple

     While watching one of her favorite PBS Kids shows, "Splash and Bubbles" with her, I heard the sweetest little song about making a difference.  "One Small Ripple", the lyrics of the song:

"I'm gonna make one small ripple.

Yeah, I believe a little thing like that 

can turn into a big ol' wave.

I'm gonna make one small ripple.

Can you imagine what a difference 

a lot of little ripples could make?

The tiny things we do today, 

make a world of difference half a world away.

So, if I had the chance I should make my ripple

something good.

You'll be amazed, I know it's true. 

I hope you get inspired too. 

With one small ripple coming from me and you.

And see what my small ripple can do."

     The song made me further think about how I have been told numerous times how Kerstin has touched so many with her smile, her will, her strength.  You see, this child of mine has been through so much but she still manages to smile and inspire others, not just locally but across the state country and around the world!  She is my light, my life and I truly hope that her ripple is making a difference.  It has for me, and I don't mind sharing this journey of "Growing With Kerstin" with you all! 

More to come...

Birthday Love!

     Yes, we are in the midst of another birthday for my darling child!  December 17, 2001 my life changed, and it did so for the better.  I went from a naive young lady, not too concerned about how things were in the world, admittedly a little selfish at times, to a woman that cares so much for the little girl that has changed my life and the lives of so many family, friends and loved ones near and far.  Kerstin is loved so much!  I cannot express fully the love she is shown over and over and over!  

     I feel so blessed to be called "Kerstin's mommy"!  I have said so many times that this little girl has changed my life, she has forced me to grow in ways I would have never thought.  This year, I am so thankful and at the same time a bit saddened.  This is the first year that Kerstin is celebrating a birthday without her Granny!  

Moments after giving birth to Kerstin, she was in my mom's arms.  

  

Hours after Miss Kerstin arrived; three generations. 

Two weeks  after her birth; at her first doctor's appointment. 

     The lady that walked into the hospital with me and did not leave until her children went home.  It is hard being a mom without the support and encouragement from my mom yet, we are going to make the most of it and celebrate life.  My mom would have it no other way.  She was always so supportive and was there for her children however and whenever she needed them.  Couldn't ask for a better mom! 

     So, here we are 14 years later, and everyday is a new step on our journey.  There have been some days, when I thought I wanted to just completely give up.  The words of wisdom from my mom always ring in the back of my mind, "You may give out but don't give up!"  

     Things that I am not giving up on:  the love I have for Kerstin, advocating for children and adults with special health and educational needs, faith, and  overall hope!  As we celebrate Kerstin's birthday and the holidays, we are filled with mixed emotions but, love outweighs them all.  

     So, Happy Birthday to the best child I know!  The love of my life, my joy, my reason for doing a lot of the things that I do.  I'm looking forward to more of this journey of Growing With Kerstin, we have a lot to do!

Happy Birthday, my wonderful child!!!

     

Brag? Maybe

     I can proudly say that I am not one to brag...or at least I try my best not to brag.  When it comes to Kerstin and a milestone or achievement she has made, or something she's involved in, that all goes out the window!   It is with so much happiness that I can honestly and very proudly say that this post is nothing less than a brag post.  *insert a happy smile*

     So, I'm sitting with Kerstin, giving her a bolus and like always, I casually talk with her about what's on TV or the day we've had.  I notice that her little hands are growing, as is the rest of my little lady.  So, I take her hand and kiss it, telling that it's so soft and that is why my little one year old niece always kisses her hand.  I continued holding it as were bonding and I'm feeding her.  Suddenly there is a strong grip on my hand!! I looked at Kerstin and she's looking directly into my  eyes with a big smile on her face.  I said to her, "You're squeezing my hand!"   Without any hesitation, she squeezes it again!  Four times in a row and at my command of "Can you squeeze my hand again?"  She did so!!

My sweet girl is strong and a very determined little girl.  No matter how tired I may become, which happens every single day, no matter how often I feel like I want to give it all it...those times have hit me.  I know that if all that Kerstin has been through in her 13 years of life, I can and should be able to continue on!    And continue on is what I will do! 

She squeezed her momma's hand... 

     

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!

About yesterday...

     Since yesterday was World Cerebral Palsy Awareness Day I had to make a post, it couldn't be the usual "Wordless Wednesday" post.  So this one will be a "Throwback Thursday" combined with a "Wordless Wednesday"!  Enjoy!

Cousins--best friends.  October 2013

Kerstin on World CP Day October 1, 2014.

More to come...

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...

Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!

Weekend in pictures!

Kerstin and her cousin/friend.

Kerstin with her former P.E. teacher

Working pups

Kerstin with Jackson

Kerstin with Roxie

Kerstin along with Lucy and Millie

Kerstin and mommy...balloon release. 

50 Shades of Hello!

SPEAK!  I will respond... 

      When you are out and about and see a person with a disability do you assume that because they look a little different, they use a wheelchair, they are non-verbal or are blind, they are not worth the effort of a simple "hey"?  Do you stare? Does your children stare?  Do you tell them that it is okay to speak to that person?  Do you speak yourself? When you see a person with special needs, do you see the person or the disability? 

     You know there's a saying that a smile can brightens someone's day?  A simple hello can do the same.  I often think about a song from "Yo Gabba Gabba" that says something like "no one wants to be left out, everyone wants to be included..."  That is so very true!  That is also the case for families, work, school, and community.  No one wants to be left out, or treated like they don't exist. 

     I believe that children reflect their home surroundings before anything or any other influence.  Personalities come early!  I try to speak to everyone I come into contact with.  Verbal or just a head nod or smile.  It could possibly be what someone is needing at that time.  

     Speak to Kerstin, she acknowledges everyone she comes into contact with.  She has not hearing or vision problems.  Ask her her name...we're working on getting her to hold a conversation with her Dynavox, until then, "Mommy" will tell you for her!  Talk to her! She looks UP for yes, she looks away for no and sometimes manages to verbalize or shake her head no.  Speak to her if nothing else.  She is a person too. 

     Hey, Hi, Hello, Hola, Ni hao, Bonjour, How's it going? or a simple kiss on the hand.  My 1 year old niece is adament about kissing Kerstin's hand every single time she sees her.  Now that she is talking she comes over and is speaking to Kerstin before she walks into our home, she makes her way to Kerstin and kisses her hand.  

     She seems to know that Kerstin can't verbally speak to her, but the smile says it all without a word being uttered.  It's love! It's an act of kindness.  Tell others, disability does NOT matter!  It's okay to say "Hi"!


 "A person's a person, no matter how small." ~Dr. Suess
    

Unexpected Happenings...One Year Later!

Spring Break is here once again.  This year on the Monday of the break, we were at home.  No scheduled appointments to Children's Hospital to see a neurologist, or to have a swallow study done.  That's exactly what we were doing this day last year.  

March 25, 2013 a day/date I will not forget for a long time.  
That is the day I was told that it was no longer safe to feed my child the only way we had used for 11 years.  We could not leave the hospital.  I still cannot describe the shock, the hurt and the fear I felt that day.  That week she spent in Children's is chronicled here.  

Kerstin at Children's Hospital-Neurology--March 25, 2013

A year later, Kerstin's weight has doubled.  She has outgrown pretty much all of her clothes.  We are in a slow process of building a new wardrobe for her.

Kerstin-both taken March 28, 2013 

I will say this about our feeding tube journey;  I never thought that I would have to learn to feed my daughter via a g-tube.  I was always scared of them.  The unknown, the horror stories I had heard just had me completely afraid and unwilling to consider it until I had NO choice at all.  Now, my daughter is thriving!  As previously stated, her weight has doubled.  She is still easy to get sick with viruses and things from "germy" school, but not as often.  

Kerstin--taken March 11, 2014

I'm learning about the g-tube everyday, a year later.  I have become more comfortable with using it, just not changing it, I'll leave that to my sister for now.  As with everything, it is a learning process.  We are always growing and learning!!

More to come...

"Raising Kerstin"

Maybe I should say "Raising Mattisa", I'm growing each day, learning new things...and yes, I am pulling that title from the movie "Raising Helen".  Not many similarities but I thought it would be a great topic, especially after this past week. 

Kerstin was admitted to the hospital on Tuesday night!  I could not believe what was happening!  Monday night she started sneezing quite a bit, Tuesday was full blown congestion, then around 7 p.m. she's warm, temp was 99...frantically I give her a fever reducer.  I know what comes with her fevers, I wanted to stop that.  It did NOT work, she started having a seizure that came with vomit (hopefully you're not reading this while eating).  The seizure did not last long, it was 3 minutes, which is an eternity when it's your child. 

So, we continue to go through the nightly routine.  I was about to start Kerstin's continuous feedings when she becomes fully involved in yet another seizure and this time, it seemed like there was no stopping this one.  I called my sister for reinforcements on administering the Diastat while she's completely involved, this was 4 minutes into the seizures.  She gave the okay but, before I knew it she was also at my home, to assist, along with other sisters and even my mom!  I'm so thankful for that!  

Twelve minutes after the Diastat was given, Kerstin was still seizing and her temp, taken behind her ear, was reading 106.3, I said, "this can't be right!"  A rectal temp was taken and it read 104.1!!  Kerstin's neurologist was called and the on call doctor said she needed to get to a hospital ASAP since the Diastat was not working and her temp was extremely high.  

We arrive at the ER, vitals were checked and her temp was still a very hot 104.1.  This had never happened, where her temp continued to rise or stayed high, even after a fever reducer was given.  Nor, had she continued to have seizures especially after having the Diastat.  

Making a long ordeal short, Kerstin had a cloudy x-ray, showing early pneumonia, causing her to be put on oxygen.  Her Keppra levels were not at a range her neurologist thought it should be.  In order to control seizures, the meds have to be present in her blood and apparently the level was too low to keep the seizures at bay. So, you guessed it, that was increased, the dosage is now 
doubled. 

Kerstin is home once again, thankfully.  She has quite a few follow up appointments coming up.  The story of our life!

Kerstin must have known she would be going home this day, she slept so peacefully!

It is always good to know that there are so many people that care, one of her former teachers (adoptive grandma and great friend) sent this card to her the day she came home!

More to come...