The Journey

I am alone a lot…..well, Hannah is always with me but in many ways that is like being alone.  She does her thing; she plays, does her school work, reads books, plays with her iPad all by herself and she wants it that way.  She has never needed my attention for the most part except when I am on the phone then she does everything she can to get it!  HA!  She is pretty independent, knows her routine and likes her time to do her thing.  So, even though we are at home together a lot of the time we are not in the same room.  That time gives me way too  much time to think, research, process and wonder about many things.  Dennis got home yesterday and I was showing him all this research I had done on one of Hannah’s blood tests that came back crazy wacky from last Wednesday (it is the only test that has come back so far, but has us even more confused).  He just looked at me and his expression was “you have lost your mind and you are going to drive yourself crazy trying to figure this out!”  HA!  He listened to what I had to say and what I had found but I know he knows I am driving myself batty.

Another thing I wrestle with a lot is WHY…..that question is impossible to answer because in my belief only God knows the answer to why we are here and why we are on the journey we are on.  This morning while Hannah was sitting on the potty for an HOUR just trying to go “Number One” as she calls it I had the iPad and was scrolling around Facebook and I saw this sign:


It struck me hard and I feel it is so true for me.  I have blogged many times about the person I was prior to Hannah.  I was nice and kind (probably more so than I am now).  I was also a doormat for people and I couldn’t say no to anyone.  I was a people-pleaser and I am for sure not that anymore!  I was also extremely selfish when it came to materialistic things like the car I drove, having manicures and pedicures, the home I lived in, the shoes, shoes and more shoes….etc.  I had to have the nicest things and go on the best vacations and brag about them.  I thought for years those things are what made me likable and gave me friends.  I thought the more I had the more people would want to be around me, because that is all I had to offer.  Such wrong thinking and a perspective that rendered a lot of regrets in my life.

I truly think this above sign is what my journey is about.  It might not be true for your journey whatever that may be.  But, I know that the journey that began with Hannah nearly 11 years ago is the reason that I lost my selfishness, could start saying no to people and am no longer anyone’s doormat.  I have learned so much on this journey and some of the most important lessons, I never would have learned had it not been for Hannah.

  • Boundaries……one of my biggest challenges and lessons learned.  You have to have boundaries set.  You can’t live your life without them or you will go crazy.  I have set so many boundaries in my life because of Hannah and they were and still are necessary to protect her and to protect Dennis and me.  Dennis and I set a boundary many years ago…..all that matters is in our 4 walls…..nothing else matters.  We still feel that way.  People can think we are strange or uncaring but we don’t care.  What matters at the end of the day is that we protect what is in our 4 walls.  PERIOD!
  • Saying NO……I always had problems with this.  I thought being a people pleaser and saying YES to everything would make people like me.  I thought the word NO was a bad word and you never said it to anyone, EVER!  That is so wrong.  Sometimes you have no choice and you can say it in a loving way and you don’t have to give an explanation for it.  I used to say no and feel so guilty about it that I would give this long dissertation on why I had to say no….but, the fact is, you don’t owe explanations to anyone for anything that you do.
  • Materialistic things……this was a BIG lesson for me to learn.  The nice vehicles, the big home, the bling, shoes, purses, clothes, even having my nails done every 2 weeks.  I had it all and did it all.  You know what?  It didn’t make me happier…..Dennis and I had a discussion just last week about Hannah and her health issues.  He said something so profound…..he said “Tam, even if we won the lottery (we would have to play first) but even if we did, NONE of that money would fix Hannah.”  It doesn’t matter how much money you have when it comes to the important things in life (in our case it is finding a cure for Hannah), it won’t help.  No amount of money could figure out and cure our daughter.  Yes, it could hire a nurse that insurance won’t pay for and it could pay for a private jet to take her to specialist after specialist to try to figure this all out, but it wouldn’t heal her or give us back the past 3 years!  No amount of money, nice cars, nice homes, mani’s and pedi’s, nice clothes or shoes could give me what my heart longs for the most!
  • Walking away from toxic people……I have done this one many times.  To this day, I keep my distance from others that could be toxic.  I don’t have time to surround myself with people who I cannot trust and  who have done or could do me harm emotionally, mentally or spiritually.  I don’t have near the “friends” I used to have but the people I call my friends now are truly that!  The ones who you can call anytime day or night, have your back and keep your confidences.  Those kind of friends are hard to come by and I am thankful for mine.
  • Priorities……my priorities are probably different from yours, because our lives are different.  My #1 priority is Hannah; her well-being and what is BEST for her…..nothing else matters.  There are days where I set out to do things and none of it gets done because Hannah has switched my focus and I have had to adjust my schedule to accommodate what is best for her.  There are days where I want to cry because I can’t get done what I feel like I need to but I keep her my priority even if it means not getting to do something that I think needs or has to be done or doing something I want to do.  Dennis and I have had some really serious conversations lately about our life and what the priorities are.  All the conversations come back to Hannah and what is best for her.  We have a lot of difficult decisions to make down the road but we know that our number one priority is what is in Hannah’s best interest.
  • Perspective…….this is still a work in progress for me.  I lose my perspective a lot; sometimes daily.  I will start grumbling or mumbling about how unfair life is and how I want to live again and not be a prisoner in my own home; but then I have to reel it all back in and realize that this is my life and Hannah is my priority and realize that it isn’t as bad as the lives others are living.  I have to remember that I do have it better than so many people do and bring my perspective back to my own journey and be thankful for the positive things (even the smallest things) that I can find.  Yesterday my joy was found in the fact that I no longer have to boils 17 syringes everyday and draw up liquid medications each day.  Hannah is totally taking all pills now and the fact that I won’t spend an hour each and every day boiling syringes and drawing up medications is HUGE for me!  So, my perspective yesterday was “at least I don’t have to do that anymore!”  HA!
  • Counting my blessings……somedays they seem like more than others but I do find a reason to be joyful and thank the Lord for the blessings in my life. Even on the days that I want to just crawl back in bed, pull the covers over my head and never get up again…..I find something to be thankful for and that truly keeps me going!

My journey… isn’t yours and your journey isn’t mine but I truly believe in my case this journey God has me on is to un-become everything that I was not meant to be and become who I truly am.  I have found a strength I didn’t know I had.  I have found a peace that only God can give.  I have found grace that I didn’t know existed and I have found out what unconditional love really means.  My journey has truly changed me.  I still have a lot of learning, growing and changing to do but I can honestly say for the first time in my 44 years I actually like the person I am and 10 years ago I could never have said that honestly!

Until next time………


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