Friday, December 05, 2014

Say, "I think I can!" and you know what? You will!

Tonight, Addison asked me to read her the train book.  Our normal train book is about colors and tunnels and I basically have it memorized. But tonight, tonight she brought me this book, "I Knew You Could".  It's been a LONG time, so I could not remember all of the content of this sweet book.  So while reading to my sweet children tears just poured down my face...


"You'll go through tunnels, surrounded by dark, and you'll wish for a light or even a spark.  You might get scared or a little bit sat, wondering if maybe your track has gone bad.  So here's some advise to help ease your doubt.  The track you took in must also go out.  So steady yourself and just keep on going - before you know it some light will be showing.  And then you'll be out heading to a new place you'll be ready for the next tunnel you face."

This week has been a rough, and dark.  As my healing has continued, I have gotten more and more feeling back, which is wonderful, but what came with it was excruciating nerve pain.  As the nerves regrow and try and figure out what to do, it can cause pain, that according to the doctor, can last for months.  I have spent hours just crying, thinking, how will this get better, maybe this is as good as it is going to get.  But then, this amazing thing happened.  On Wednesday night...my skin that was compromised took an amazing turn for the better.  Tonight, it almost looked like real skin.  AMAZING!!!  We will still have to schedule another surgery in the next week or so to remove some of the skin that did not survive, but it will be so very small.  "The track you took in must also go out", what a reminder!!

"Sometimes you'll look up and see plane in the sky, and you'll think to yourself, "I wish I could fly"
 The cars on the roads will seem quick and free - you'll feel stuck on your track and think, "I wish that was me"
Don't worry about not being the car or the plane, just enjoy the trip you'll take as a train"

I have found myself thinking more than once during this process, "Why is my recovery so much different than others, why can't I just "heal" like normal?"  So you can guess the "Don't worry about not being the car or the plane, just enjoy the trip you'll take as a train", was a powerful message for me tonight!

"You'll need all the strength on the days when you're stuck or tired or sad or just out of luck
When your belief in yourself doesn't feel quite so pure, and your "I think I can" don't sound quite so sure.  
There's more about life that you'll learn as you go, because figuring things out on your own helps you grow.  Just trust in yourself, and you'll climb every hill.  Say, "I think I can!" and you know what? You will!"

I thought when I was younger that as I got older or at least by the time I was 30 I would feel like I had learned more and would have more in my backpack of knowledge.  But instead, what I have found, is learning is a journey not a destination.  We travel through the learning, its not a place we land!!

I am grateful my sweet Addison had me read this book tonight and I was able to learn so much from both it and from her!!  She kept asking me why I was crying, and my only response was, sometimes books make us cry.  This process has been hard on her.  Everyday she asks when I can pick her up.  It breaks my heart, but when I look in her eyes I know this is for her and her brothers...so I can hold them for a LONG LONG time!!

Medical Update:
- Follow up appointment next week to schedule the skin removal surgery
- Drains have been removed (this means I can shower, greatest news)
- Expansion process will commence as soon as I have recovered from the next skin removal surgery
- I am learning ways to deal with the nerve pain and feel confident it will be a memory sooner than later

And, really, just had to share these cute little people!!  I am one lucky mama!!





Wednesday, November 26, 2014

She thought she was vulnerable...

As I climbed into bed for the last time before surgery, I thought to myself...I am ready to be vulnerable.  I have had 3 babies via c-section so I know how to accept help, it's hard for me, but I can do it, no big deal.  Now fast forward 6 nights and 7 days with me...what I thought was a simple act has turned into the most epic learning journey I have had, to date!


Vulnerable means, susceptible to physical or emotional attack or harm...however I decided I would define it for my purposes as, needing to ask for the following things...
1 - Someone to help me get dressed
2 - Someone to help me get food
3 - Someone to drive me to my appts
4 - Someone to help me wash my face
5 - Someone to help me to the restroom
6 - Someone to help feed me (in the hospital)

Those were the things that I predetermined would make me vulnerable..when I would "allow" someone to help me do them.  As planned, day 1 and 2, my list was coming in handy, and I was so successfully vulnerable.  I was almost proud of myself.  You may choose now to laugh directly at me if you wish, as this was clearly not the end of my journey, to be honest it was not even the beginning.

Once we were home, I needed a little more help and there were lots more "standing around watching" moments.  "I can't even get my baby dressed" I remember thinking one morning, so in frustration I decided to try.  It ended, with me crying and a not even half dressed baby Noah...the question came from the other adults in the house, "Why would you do that"..."I am not sure, I am sorry, I won't do it again for a few day, until we decide I am able".  I felt discourage and stupid, I knew I should not have tried, and I did anyway.  It was after this experience that I realized, I was not the only one being vulnerable, but I was asking those that love me the most to be vulnerable as well.  The next morning, when I told my mother I would wait for her to help me get dressed, I promised her I would not do it on my own.  She paused and looked at me, almost saying with her eyes, "I am trusting you to keep your promise, and if you don't, you will have hurt my and the trust we have."  It was in that moment that this "vulnerable" thing  "I" was doing, went deeper and encompassed more "participants".  This was so eye opening to me, and while it may have been that the muscle relaxer and the pain meds had kicked it, it made me reflect on the times when I said, "I will wait" and then tried to do it myself...that is why my mother paused.  I had given her reason to.  In those moments we were not being vulnerable.

As the day progressed we were headed to the dr office for my post ops...I had so little fluid coming from my drains, they were certainly going to pull them today!  I was some kind of medical marvel.  Normal people have drains in for almost 2 weeks, but I had done it in less then 7.  I kept thinking about how getting dressed and even just getting in the car, were going to get so much easier.  It was the best car ride to the dr anyone could ask for...I had made it through the "hard vulnerable stuff" (for real, laugh, it's just comical).  When we arrived at the dr office, I hoped up on the table (figuratively of course) and patiently awaited the RNs arrival and  what was going to be pure amazement at my healing ability.  So, in walked cute Allison and as we started talking about the drains, she started looking at the wounds...and said, "I am going to take the dressing off, lets see what we got."  A few moments later she said she needed to get the dr and that we would not only NOT be pulling drains today, that we might have a skin survival issue.  I will state now, that through all of this, skin issues were my greatest fear.  So here I was, ready to be given the gold star, and my whole plan was crumbling around me.  So after the dr, the PA and 2 more RN's visited, I sat on the table and just cried.  I cried for fear, I cried for pain and I cried because it all became the unknown again.  I said a little prayer, and with a deep breath I took as we walked out of the room the Spirit whispered to me, "this is where you start learning about being vulnerable, this is where your trust journey begins".
How had I missed that???????  How had I forgotten that?????  How had I lost sight of the true blessing this WHOLE process is??  I found the following quote and I loved it so much I had to share...


How beautiful is that?  He EXPECTS us, to pray, not panic, not jump ship and be believing and trust in him...for when we do, when we CHOOSE to be the eternal, 3 dimensional level of vulnerable and not give up, he will hold us and say "I told you it would be okay"...what greater promise is there??  What greater blessing is there??


As I was doing some research about being vulnerable (for work actually) I came across this quote and remembered it tonight.  One of the things we have to do, because of the skin survival issues, is put a heavy paste on day and night.  It requires soft hands, patience and honestly a strong stomach.  So tonight, doing our first round of this treatment, my sweet husband with soft hands, wiped off the old cream and applied the new.  I stood in our bathroom with my husband kneeling in front of my broken chest and cried.  How was this man going to look at me again, maybe I should have my mom do this, maybe I could just do it, were all things that were running through my sad, scared mind.  This sweet man, grabbed my hand, and as my mother did earlier in the drs office, softly said "It is all going to be okay, we will get through this"...how was I blessed with these amazing people??  How could this loving and compassionate man really think I was beautiful...I mean dressed sitting in a chair, fine...but like this??  Another step in my journey of being vulnerable...this step may be one I have to keep taking...and you know what, that is okay!!  Honesty is the prettiest!!


And finally, the last and what I think, most powerful of the "pick me ups" I came across.  "I wonder what I look like in your eyes".  There is application across my journey...of whose eyes are being used.  My husbands, my mothers, my children's, my drs, The Lords??  I want to be the kind of person, that through others eyes...can be trusted to be vulnerable, who can be strong enough to be vulnerable and who can have the faith and patience needed to be truly vulnerable.  Because as Bob Marley said "Being vulnerable is the only way to allow your heard to feel true pleasure"

So, here is to true pleasure and the learning journey I am on...if you stayed with me, good job!  Thanks for following my journey and for all of your kind words and support...it means more to me than you know!!

Saturday, November 22, 2014

Midnight snuggles

Addison had a hard time sleeping my first night home...so we improvised.


I am so in love with this little princess of mine...

Awareness

As I lay here, in my quiet house listening to my babies breath through monitors, I find myself overwhelmed with gratitude. 
I am grateful...
To be Home
For amazing doctors who are gentle and kind 
For wonderful children who want to "take care of me" so I can play with them 
For an amazing mother who spent a very long hard night in the hospital with me 
For a Mimi that is unendingly giving and present for my babies 
For a sweet, kind, wonderful husband who has taken on so many new roles in the last few days
For amazing friends and family who have been "here" for anything I need. 
I am overwhelmed with the love of my Heavenly Father and his awareness he has if me and my little family. 
It's amazing to me how much I have learned in the last 72 hrs that range from pain tolerance to the depth of unconditional love. 
So, I am home. Things went very well. Thank you all so much for your love, prayers and support!!
Quote is the day "friends don't let friends selfie while on heavy pain meds"...your welcome for the laugh!!

Sunday, November 16, 2014

BRCA 1

It was a long scary ride home from MD Anderson in Orlando.  My mom had been in the hospital for a week and we were on our way to healing, recovery and finally heading home.  So much had happened I had almost forgotten I had even been tested.  Sitting in the hospital room, waiting for the morning rounds and getting some work done, my phone rang.  In a matter of 3 minutes,  my day changed, my life changed.  I now had knowledge, knowledge that would, could change my life forever.  I was diagnosed with the BRCA 1 mutation.  The "Angelina Jolie" mutation.  The mutation that took my chances of breast cancer from 13% to 92% and my chance of getting ovarian cancer from .3% to 86%.  My mother had just had a single mastectomy (later that year should would have the other breast removed) and my grandmother had ovarian cancer and left us at 61 years old.  This news was amazing, scary, a blessing, scary...
I drove home, and cried the whole way.  I was scared and worried and grateful.  The Lord and my mother had given me this gift and I wanted to make sure I used it!!  
We had a choice to make...would we take this new information and use it?  When would we use it?  How would we use it?  After LOTS of research and reading and learning from amazing doctors, we were told we could go on and have babies until we were "done" and then come back to them.  Here is where we introduce Noah :)
The end of August I decided it was time to go back and get a new set of scans and start the "what is next" conversation!  I met with the OB oncologist first and we decided to wait until after I am 40 to deal with any of the "inside plumbing".  So next up was the breast oncology team.  After meeting with the breast surgeon and the plastics team we determined it was the best course of action to do a prophylactic double mastectomy.  From a medical perspective, this was the best option.  It was easy to decide.  The goal was, stay alive.  However, over the past few weeks, it has become clear to me, this process is not "easy".  I have had so many feelings and so many emotions related to the mastectomy and "losing" my boobs.  I have struggled with the idea of losing the part of me that made me "important" to my new babies, the thing that provided them nourishment when they were born.  So many thoughts of "what will I look like when it is over" and "will I be happy with the end result"...It seems so vane, how could I be thinking these things, when I really just want to protect my life.  Its hard to imagine making drastic changes to my body, but now that I am here, its scarier then I thought it would be and feels a little like I am entering the great unknown!
I have gone back and forth between sharing my story or keeping things close to the cuff.  After reading blog after blog, I found myself so grateful women were sharing their experiences and stories, so it was at that point, I decided I would blog my story and share through my process.  I hope to learn more about who I am, what I am capable of and also document the hard stuff, to remind myself later.  The phrase "I can do hard things" comes to mind often.
I am so eternally grateful for technology that will give me my best chance for being here for a LONG time for my family.  I am grateful to my mother for her incredible example of strength and perseverance and love!  I am grateful for the atonement and the blessing it is to use when ever we are in need.  I am grateful for my husband and his never ending support.  I can not imagine my life without him!  I have an amazing support system and am so grateful for the love and support I have received as we determined this was the path.
I know this was a long post, if you stuck it out, good job!!
I go in for surgery on the 19th of November for the first of 2!  

Here is to blessings, renewed faith and the love of my Heavenly Father!



Just because, I can't do a blog post with out some kind of picture of my peeps!!  Love them to bits!!
They are the reason I can do hard things!!

Mom's who work...

There has been lots of talk about "working" moms and "stay at home" moms.  I am sure that I am going to make people upset, but I would really like to say, we should really just call ourselves MOMs...
We all do the same thing...
- we love our kids
- we clean our homes
- we do laundry (LOTS of it)
- we provide for them
- we cook
- we plan meals
- we teach them
- we share with them
- we play with them
- we take care of everything that needs to be cared for
- we share with our children the love of our Heavenly Father

So, why do we have to define if we are the "working" or "stay at home" kind??  Why must it be about what working moms are not providing to their kids, or how they are "letting others raise their kids"...all things I have been told!

I love my children with every fiber of my being.  They are a part of me and no matter how much I work, or who is with them when I can not be, they are mine!

I choose AMAZING people to be with them so that when I am not able to be, they feel loved!!  

With all of the extreme conversation, I was getting really upset and feeling very judged.  I work full time and I have on occasion missed bedtimes or a wake up now and then.  I hate when I have to miss time with them.  The other night I was feeling particularly bad about time away from my kids, and Logan came in with this...


He knows I go to work and that I have a job...he knows Mickey is my boss and that I work at Disney.  So when I read this I was reminded...its not about being "home" with my kids...its about BEING for my kids!!  I am here!!  I am so blessed to have amazing children who remind me ALL the time that they know more then I do!!  I am so grateful for an amazing husband who is the best team mate I could ask for and for all of the support and love he provides this crazy "working" mom!!  So, for now, lets just refer to each other as moms...and let go of the extra classification that in essence makes the other feel lesser then she is!  

Noah Max



Noah Max Ulmer
January 29th 2014 1:23pm
9 lbs 11 oz


This little man came into our life calm and quiet...the way I really felt he had been my whole pregnancy.  He was an active baby inside, but had a calming peaceful presence.  Mimi came to be with us.  There was nothing wild or crazy late night runs to the emergency room like with the other babies.  
Everyone, including Bob and I did not think I would make it to the 29th, and then I did!!  He was right on time and he was happy as could be even right out of the "gate".  He is the sweetest!!  He has brought us such joy!
We were in love from the moment he entered our life and could not imagine our life with out this sweet little man.
I started this post, shortly after I had him, and then as life does with 3 children, I never got to finishing it!
So, all I can say is, I love this face and his sweet happy all the time personality.  Even with him being my 3rd baby, I almost forgot babies should cry.  He never ever cried.  When he did I was convinced something was wrong.  I had to remind myself that he was just a baby.  He is pure joy.  His sweet brother Logan and very loving sister Addison could not love him more!  They were so excited to meet him and kiss him!!  Addison could really not love him more!!


They are my pure joy!!  I am grateful beyond words!!  I could not imagine my life with out them and their lives without each other!!




We were able to bless this sweet boy at our house before my mom had to go home.  It is hard to have family so far away, but we are so blessed with amazing friends as family and technology to link us to my dad and grandfather!!