Few True Friends

To those we are most grateful for  ---

I would like to touch base on Thanksgiving.  This year, 2014, has been very challenging for my family and I.  Words can not ever express the gratitude that we feel because of those who have reached out and been supportive.  While I was dwindling away and thinks looked grim with me, the individuals who stopped by and just sat with me while I did god only knows what, is something we will never forget.  Laura and Angelique – I do not remember much but considering the circumstances, I can imagine I was incoherent.  You still sat by my bedside and I am forever grateful.  Sabrina – the support and resources you provided us with and all of the calls you made setting up things or helping us make plans for our sweet angel – we both appreciate you.  You live in PA now yet you still reached out and I am especially grateful for that.  I am grateful for my adopted sister, Veronica.  We did not meet in the best circumstances but what has blossomed between us means the world to me.  Another sweet soul in the world that is young and had no idea what to do, yet she still did something.  Anyone who reached out to me regarding the loss of their child – I will admit.  I felt alone.  A million and one people could have been present and I would have still felt alone.  I am especially grateful for your support because I know it brings up something very difficult to cope with, yet you reached out to me and you were the ones who truly understood what we were going through.  For the love of my life, I am most grateful for you  because when I stood in the middle of a dark hallway trying to determine what I was supposed to feel and how to celebrate and mourn, you took Bee and did what I could not do at that time.  I have been a basket case, especially recently, and you never judge.  You are by my side doing everything in your willpower to put a smile on my face or just let me be so I can somehow cope.  Mum, our beautiful announcements and dealing with family and some friend announcements when I was being bombarded by others, helped tremendously.  My sweet K-bug, I love you.  You are an amazing big sister and the most helpful too.  Laura and my other adoptive mom – you amazing ladies were the ones who helped me pack up Asher’s clothing and take the first step of trying to heal after everything with Madalyn. while my sweet and devoted man did all he could and I appreciate it, there is not a single thing that I could do or say to express how thankful I am that by surprise making easier to   – unbearable.  You  I had no idea what to do since one of my unborn children was diagnosed male and certainly had no penis when at birth – I was stress and overwhelmed.  You let me cry in your arms…you just let me cry when I lost my composure.

If your name was not mentioned above or none of the above general thankful remarks apply to you – I appreciate you too.  I can not stress this enough to all of you who reached out to us – I had no energy to hold myself up and in ways you held me up when I was my weakest.  I love you all and the thankfulness and way I feel about each of you is beyond measure.  You are a piece of my heart and I am blessed for each of you.

I am having a difficult time with it being a year in less than a month.  I have put a shield up and been distant.  Thank you for understanding and checking in on me every once in a while.  I will come around.  I am going through the worst part of my counseling appointments to help me cope and everything that I have – energy wise – I need to focus on that.  I am at the point where we are talking about January 2nd and January 3rd of this year.  Every damn detail and I am not doing well revisiting things and this is my first time discussing things detail by detail.  I can’t rush this so please understand.

Acceptance

First, a close friend of mine is going through a medical crisis.  If you pray or could just keep her in your thoughts while we figure out what is wrong, I would appreciate it.  She is a remarkable woman <3.

It has been a challenging week.  My current chemo plan is 1 time per week for 2 weeks and then 2-3 weeks off, for a total of 6 rounds.  Then we will reevaluate according to labs and my progress.  If I start developing issues or the doctor ends up with concerns about the current treatment approach, then we will approach it at the time.  This was my first month under this extended treatment plan and it is kicking my ass.  For the most part, I am extremely exhausted.  I have been having troubles with anemia since March of this year during that hospitalization but now we are monitoring it more closely.  I am having the basic side effects of nausea and nausea too.  I feel out of it or confused sometimes but it isn’t too bad so far.

My biggest complaint aside from being diagnosed in the first place is the pain.  I feel like someone is driving a semi-truck over my entire body repeatedly.  I am so sore and I do have medication but when you are already confused, the last thing you need in your system is a narcotic.  And because of what happened in March and April, as well as my current condition, there are certain medications that my doctor has blacklisted.  Thankfully, I am so exhausted that sometimes I just sleep through it.  If its there when I wake up but not much of a bother while I am asleep.  My hair is starting to thin out and fall out a little bit but it is not of great concern.  If I start to get bald spots then that is when I will worry.

Emotionally, I am doing well but have my moments.  A good friend of mine reached out to me about 2 weeks ago about letting some people in about what I am currently going through.  I feel like I may have said something that came across as if I did not appreciate her or her support.  Without mentioning names, because I know she will know as she reads this, I am truly sorry if I did come across cold.  The truth is, I value you and our friendship, and always will.  I really appreciate those who have reached out to me.  I have not announced this to all friends and family yet.  I have kept a low profile and have been taking care of myself, as well as, all my other responsibilities.  I am a fulltime student, mother, wife, etc.  Every moment that I am not asleep, studying, or working; I am spending time with immediate family.  I am trying to not let this affect Bee anymore than what I am sure she can already sense.  I have been focusing on me too. I am still working overnights but am no longer working fulltime hours.  This has been helping out some.

Enough about the “c” word. 

Bee is doing very well.  We’ve reached a couple of milestones this past month.  She is now trying to crawl. can sit up on her own, is teething, is able to grasp things well, thinks her feet are delicious, and is about to celebrate her first Halloween.  I am sure I am forgetting a couple of things but these ones are fresh on my mind.  I don’t know why I have been worried about her delay in development as much as I have.  Developmental delays are not uncommon in babies with CF.  There are less concerns than the last time we met with her “medical team” so that is awesome, positive, and a relief.  Kbug is doing wonderful.  She loves school and has made great improvements. 

In counseling, we have been discussing the big #1 birthday and how to celebrate.  It is very important to me that we include Madalyn in some way.  It has been suggested that we receive some sort of closure regarding out loss such as a small get together with family and friends, or just the immediate family, celebrating Madalyn.  Part of our discussion has been to affiliate Madalyn and what happened with another day to help me separate the two, in some way.  It is okay for us to incorporate her on the 3rd of January with bee but in a way that eliminates the feeling of being torn that I often have.  I do not know what we will do.  It seems like it is too late but at the same time, there is no real or right time to do something like this.  Acceptance has been a challenge and by doing this, I develop a new and healthier sense of acceptance. 

I just finished the last of my major assignments in my Human Sexuality course.  On Monday, I begin a Philosophy class called Ethical Thinking in the Liberal Arts.

My love and I are doing well.  He drives me crazy but is such a great man.  He is incredibly supportive right now and that means the universe to me.  <3

I have much more to write about but I wanted to post a general update since I have been distance since my diagnosis.  I got off of work at 4:05AM, work again at 2PM and then off at 6PM, and then come back a third time from 11P to 5A so I should probably rest while I can.

Selfless, Not Selfish

When I was younger, even often now, I was referred to as selfless and always putting someone or something ahead of myself.  I have a huge heart, the kind that would be taking advantage of, often.  At first, I saw no harm.  I was blind to the fact that it was being done and if I did know, it was unlikely that I cared.  I spent my share of time in and out of residential treatment centers trying to cope and heal from childhood trauma.  Throughout my treatment, these behaviors were a big part learned through observation.

Most of my life, I have sacrificed how I feel for the sake of others happiness.  It is easy to seek distractions from losing a child or being diagnosed with cancer but it is something I need to face.  I feel like I need to focus on myself and while some people may label me selfish, those who truly know me would see that I am doing what is best for me.  Of course, this does not eliminate responsibilities of raising a family with my significant other. 

Following my divorce, I had to find my center and my happiness.  I needed to rediscover who I am.  It was very important to me that I do some soul searching.  I wanted to know how I was able to determine what happiness was if I had no idea what made me happy.  Even more so, what did I expect out of life?  When I isolated myself from everyone with the exception of my mother and Kayla, I was able to rid myself of constant distractions and who I am and how I want to live.

I never knew happiness until I figured out what happiness is to me.  My priorities shifted gears.

Things have been chaotic here.  I am a fulltime mother, full time lover, full time employee, fulltime student, and now I am fighting, once again, for my life.

When I was first diagnosed with breast cancer I learned that people come and go.  Some friends though that making one phone call or sending one text, that they covered their basis and expressed that they would keep me in their thoughts.  Do you want to know how many of them have contacted me since?  2 or 3.  I could be dead for all they know.  I should have had a strong support system at such a difficult time.  The most powerful lesson about myself that I discovered was just how strong I am, even without those so-called friends.

This is yet another reason why I turned to blogging versus friends, family, and social media.

I am going to rest before work but have every intention of writing and update in the near future, perhaps tonight.

Where Weakness Flows

The time has come again where I feel the need to blog.  I don’t feel comfortable or ready reaching out to friends or loved ones.  I am expected to be the strong one.  I have a family who I cherish more and more each day.  There is no room or time to show weakness.

Here, is a place where no one can judge me.   No one can pity me.  My fears are set free through my fingertips and are not projected through my face, words, or body language.  Here, I can be weak.  I can be angry.  I can be sad.  I can be whatever I need to be.  It is my therapeutic playground and I do with in my own terms.

It is October.. Breast cancer awareness month.  Fuck cancer.  I beat its ass only for it to make a reappearance in my life.  I am overwhelmed.  I have a ton of responsibilities and I refuse to give any of them up or take a break.  In the past, cancer has had its way in causing me to postpone my life and dreams.  I’m not letting it set me back, again. 

I need a place to open up and until I am ready to do so with others, I plan to use this as my therapeutic place.  I can be uncensored and I can open up.  I need to put this time aside to write and I plan on making it happen.

I need out of this funk.

Rise & Shine

A strong friendship does not need daily conversation.  It does not always need togetherness.  For as long as the relationship lives in the heart, true friends will never part.   - Unknown

Remember how I discussed positive change in previous posts.  I was serious and am off to a great start.  We had a great time celebrating our birthdays and even crossed another milestone in the family.  We have discussed announcing the recent milestone in our lives but I think right now we are going to enjoy it ourselves.   There a couple close friends that I will share the excitement with and they will remain the only ones for now.  Don’t get me wrong, I want to scream it from the rooftops but in the meantime, I like the feeling of keeping it more of a small intimate moment right now.  I want to enjoy it.  I deserve to enjoy it.  We do.

We have been working on prioritizing certain things in our family life.  I haven’t been meeting up with friends like I wish I could or anything of that nature but at least I am getting life back on more of a positive track.  I have submitted almost everything needed to GCU.  I need to fax some stuff in the next couple of days to start finishing my degree.  Hopefully I will get around to that this weekend.

I am on the road to recovery health wise.  I did have to have two more blood transfusions and we’re trying a different method in treating my anemia problems.  So far, so good.  I have blood work drawn tomorrow and then a couple appointments next week.  I have such a busy life these days.  I am working, preparing to complete my degree, tend to family medical needs including my own, try to keep a cozy and clean house, etc.  It can be exhausting but is so worth it.

Our hospital visits are hopefully coming to an end.  Our little bee is doing great right now but still requires hospital care.  We are setting up home health stuff since she will be coming home with both a feeding tube and on oxygen.  We are also setting up appointments left and right so we are prepared and have a clear understanding of what to expect, how to handle things, etc.  K-bug is doing wonderful.  One more week of 4th grade and she is thrilled about it.  We’re hoping to do a family Sunsplash to celebrate.   So proud of us as a family.

Prayer Request:  I have been forming relationships with my biological dad’s side of the family.  My cousin Bobby has been through a lot especially for being so young.  He is now in hospice care and is not responding.  He is being made comfortable until he is ready to pass.  It has been a rocky road for him but thankfully he has been able to make a ton of memories that everyone treasures.  Please keep our family, especially sweet Bobby, in your thoughts and prayers.  (Bobby’s Loving Support System).  Bobby: I wish I had the opportunity to make my own personal memories with you.  Distance and an unintentional disconnection from family prevented that but you are in my thoughts and prayers each night.  You are in my heart and I admire the strength and being able to live through the memories of others.  Clearly you are such an inspiration in so many lives.