Friday, September 6, 2013


Today is one of those days when a slap in the face from a test or a doctor's appointment can really throw me into a tailspin. 

I am forced to deal with emotions that I don't know how to deal with.  I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis.  A diagnosis that we should have found out years before we did. 

For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications,  etc.  Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life. 

It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare.   I also check to make sure Nicole is still breathing and then I say a  prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen.  It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc. 

I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that.  We have had many blessings also to go along with the hell we have experienced. 

I looked back over the last three years and  know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far.  I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant.  I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good?  I know I am not the only mom who goes through this with sick children I am sure we all do.  For me, I don't know how to do this every day and stay positive, not be bitter,  resentful, angry at doctors/God/myself  etc.  I do make sure I journal three positives from the  day every night and so far today I  only have a great parking spot up front at Walmart.  Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is. 

My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away.  I am blessed that she is stable for the most part and that things could be so much worse.  I am still able to give her a hug and tell her how much I love her. 

Wednesday, September 4, 2013

Transitions ....

I was interviewed via video chat on Google hangouts on Friday, August 30th by Denise Brown at which is a blog site for family caregivers.  I have been involved in this community for 2 1/2 years.  It has been a godsend for me and I am grateful every single day for Denise and the other friends that I have made through the site.  They have helped me more than words can express.

The interview was about transitions with Nicole and her starting online college classes on Sept. 5th.  First, I am grateful that she isn't actually going off to college and I still have her living with us so that is a little better.  I didn't think that I would have this emptiness when my homeschooling duties were over I thought I would only have relief but two months into what would be our school year I realize that I really do miss it and wonder how do I fill this gap. 

Life for Nicole and our family is different for a family with a healthy child who is going to college.  There are a lot of other responsibilities.  I am responsible for Nicole's medical issues as her power of attorney because she is 18 and considered an adult so in order for her not to have all those burdens Nicole had to give me this authority.  I am also responsible for her financial matters and her representative payee for her disability checks which I have to be accountable for.  I think of myself as Nicole secretary or administrative assistant.  I know what she expects from me and I try very hard to respect those boundaries.  I do not ask her (or try not too... this is a work in progress) if she needs help with something... if she does... she must ask for it.  I know this is hard for her because she doesn't want to depend on me and have to ask others to help her. 

I always feel the need that I must explain myself as to why I am so overprotective of Nicole even though she will be 19 in less than three weeks (wow... where does the time go?)  It is hard for people to understand if they don't have experience with this situation.  How much should I still push Nicole?  I ask this question with college... she had orientation last week and I was so proud that she had finished it and scheduled a conference call with one of her instructors (she's taking two classes).  I didn't know she had scheduled this until the phone rang and I saw Nicole on the phone.  I mouthed to her to let the instructor know about her medical issues.  She didn't need to go into detail only that it had a potential to influence her schoolwork.  After the call I asked her if she told the teacher and she said "no" because the call was being recorded for the other students.  She said she would PM the teacher.  This was last Thursday.  I asked her last night if she had done this and she said "no".  She also has an assignment that is due prior to tomorrow.... she either had to make her weekly schedule or take a picture of  her desk/work space.  She didn't want to do her weekly schedule,   this would allow her classmates to know she is ill.  I don't understand why she feels compelled to keep this a secret or is ashamed of this but I have to respect this.  She also thinks her life is boring.  She decided that she was going to take a picture of her desk area.  The problem is her desk was a mess.  She asked me to help her get it organized which of course I said I would do.  I make her take everything off her desk but her computer.  I have asked her numerous times what she needs on her desk and she says she doesn't know.  I am a little upset that she asks me to help her but when I do try she blows me off... I guess this is my problem... As of last night she still hasn't completed this assignment.  The way her classes work is she has a module to complete in each class every week which runs from Monday to Sunday.  The modules consist of  reading, an assignment of some type and then a discussion.  I need to find a balance of not hovering but still knowing that she is getting the work done without her getting behind or overwhelmed.  I thought this morning as I was thinking about this blog that I would touch base with her on Friday's to see what her assignment was and if she has completed what needed to be done.  If not, I have Saturday to make sure she gets it done.  The rest of the time I will need to step back unless she comes to me.   This will be very hard for me to do. 

Ever since Nicole graduated I feel like I am just floated a long with no place to go so to speak.  I have devoted so much time to Nicole's schooling and her medical issues that I haven't had much time to focus on myself and what I want for myself.  I know even with Nicole's illness that within a few years she will want to be on her own and move on with her life.  I need to have something that fulfills me.  Yes, I have goals like to declutter and organize my house which I have been working on.  I would also like to shed some pounds and get into a healthier lifestyle.  I would like to continue to learn about pharmacology and at some point get certified as a pharmacy tech but I don't think that I can work outside of the home and still focus on Nicole's medical issues at this point in time.   I do try to save money where ever possible and make a few bucks here and there when the opportunity arises.  I would love to find something from home for a more consistent income.  I want to continue to learn and grow into the person I know I can be.  I have been very interested in herbs and herbal/homeopathic medicine for quite a few years and would like to learn more about this and how it applies to keeping  Rick and I healthier.  I would also like to learn how nutrition can be a benefit to Nicole and her health.  I would also like to takes some self-help classes that pertain to organization/decluttering.  I still don't feel like I have a clear picture of this though.  I would also like to improve my relationship with God and really learn to trust him with Nicole and her health issues and trust that whatever happens that it is for the best.  I can't spend my days wondering why she has had to go through what she has and why we had to wait so long for a diagnosis.   I want to be more true to myself... be more like Jesus and love others more than I do... be a light and inspiration for Nicole, Rick and the rest of my family and just forget about what others think.  I want to be at peace within myself when it comes to Nicole's health and the journey that we are on with this even though this isn't the life I had hoped for Nicole or our family.  I want to help others who live with the disease or any other illness that impacts a persons life.  I also want to be support for other caregivers.  I feel like this is too much to want and how do I go about getting this all.   It is overwhelming to me sometimes as I have to remember one step at a time....