Tuesday, April 6, 2010

My New DreaMS

Here's a preview to the story I've been working on.

I’ve started a new chapter in my life………A new twist

My New DreaMS!
I hear all the time how I should write a book about my experiences, but I think I already have. It’s here in the blog maybe as not as neat and tidy as a book, but it’s ALL here, so I’ll try to put it all together, my thoughts, and my feelings through this turmoil I call ~My Life. Some of this might sound familiar to some of you.

This is again sparked by another “AHA” moment in my life. A moment that makes you step back, ponder, and reflect. You have a choice, you chose how miserable or content you are with your life. Who’s to say that different is bad and who makes that call, YOU DO. Don’t look back, push forward, and never short yourself. You are your own HERO so keep smiling and laughing, please don’t dwell on the negatives. Weirdly enough the worst will bring out the best in us. I'm a Wife and a Mom to Two "Special" Kids ~ "Anyone can give up. It's the easiest thing in the world to do. But to hold it together when everyone else would understand if you just fell apart ~ that is true strength"

I found myself looking in the mirror wondering, where did I go? What happened to ME? I lost apart of myself, the person I used to be, with being the only primary caregiver to my son, plus I homeschooled my daughter and I still maintained a highly organized homestead. Then my duties were all stripped away at the same time right from underneath me…..at least that is what it had felt like. Everything that defined me was being taken away. Who was I going to be when it was all gone? I was terrified! Now being on the other side of the track I’ve found that I’ve gained myself back, I still can be those people but now I have time for myself. It’s time to find out who I am going to be like because I define my own self worth.
I don’t ask, how much more can I handle or what more, as I know all too well there is always going to be a challenge around that corner waiting to take me on. So I say “Bring it on” as I can deal with whatever comes my way. Nothing Ventured, nothing Gained and I’ve learned from every one of my life stories.

I don’t claim to have been a saint so far in my life, but I’ve cleaned up my act, learned from my mistakes, and improved my life with all my experiences….but still it feels as if that cloud is hanging over my head. You really could make yourself insane trying to live up to the clichés that you were brought up with, those fairy tales that every little girl dreams of for their life to be…..That happily ever after. Many would look back at my life so far and say, “Boy she got a crap hand dealt to her”, but I have to disagree. I got so much more then what anyone can see on the outside.

“ADAPT ~ to adjust or become adjusted to new or different conditions”. What a strong and powerful word. A word that I have found is the description for my life in so many ways. It’s amazing how one CAN adapt when there is the need, but more inspiring on how one DOES adapt. Adapting is not an easy task for many or even acknowledged by most. I believe it’s the fear of the unknown.

“Life IS like a box of Chocolates…You NEVER know what you are going to get”
Forrest Gump, one of my all time favorite movies and quotes. I always say I have this thing with the “misfit” movies, but really it is reality and inspiring for me. Think about the quote…..they’re ALL chocolates so why is it a bad thing? The perfectly smooth delicious outer coating that looks just like all the others, but not knowing what’s inside, is the kicker. It’s what you don’t see. The surprise of what’s inside. What are you going to get? Can you handle it once you get that chance to see or are you going to want to put it back? Simple right, but unfortunately it’s not that simple and many can’t deal with what they get. Just as the chocolates left behind untouched do to fear & anxiety so are the ones left behind with the dents on the underside just so someone could sneak a peek and walk away, such is life’s expectations. There ARE things in life that some people can’t handle, that is laid before them to deal with. So I believe the saying “You don’t get anymore then He thinks you can handle” in reality is far from the truth. It’s up to YOU if you chose to except the responsibility to adapt, if you didn’t get what you had hoped for. Personally I LOVE chocolate, always have, so it doesn’t matter to me because in the end……I still got my chocolate.

I sit here waiting to go into a 2 hour MRI because of a relapse with my MS and reflect back on the last 6 months of my life. I am NOT the SAME person I was even 6 months ago when I was first diagnosed with Multiple Sclerosis. If it was only as easy as I had anticipated. In such a short amount of time there has been so much “tragedy”. How does one change so much, so fast? Honestly I can say even though 2009 was one of the hardest years of my life, ranking right up there with my sons first year of his life, it was a year that had good change too. I had to deal with the construction of our new home, my son becoming deathly ill and spending over 2 months away from my family making some very difficult decisions, missing out on my husband’s best friends wedding, and having to adjust to living a life with MS.

I’ve once again found something deep inside myself that I never thought I had. At first when you see what’s in the inside, sometimes you just want to put it back and run, or turn the other cheek, live in denial. I was faced with some pretty hard events ones that challenged me to my inner core, not to mention scare the hell out of me. But I’ll still try to keep a smile on my face, keep on keeping on, and live the rest of my life happily in the moment rather than grouchy and dwelling on the bad. As you never know when or what challenge may be presented to you the next day.

“Enjoy all the little things in Life….for one day you’ll look back and realize they were the Big things.”
“My New Dreams”
What is supposed to happen now? Where are the emotions supposed to go? Why did this have to happen? How am I going to be able to go on? These are questions that really will never have a straight answer or a right one for that matter. We live life as well as we can and hope for the best, but for some of us there is no best. At least that is what I had thought when my life was at the lowest point it could have.

Your life as you have dreamed has now turned into this horrific nightmare, and you are hoping that someone, anyone, will wake you. You feel numb because all the emotions soaring through you are too overwhelming to except. You are listening to everything that is said, hoping that there is a glimpse of good news that might get you through that day, but all you hear is words. Nothing seems to make sense or to be right. You sit and wonder about all the dreams you had made and grieve over them because they were the life you had anticipated and now the future scares you to no end. My dreams died!

No one asks for this, but you become one of the "chosen ones". The ones to love, care, and advocate for our children unconditionally. Is this an Honor? Most days it is but honestly there will be some days you will feel cheated, frustrated, and burnt out. The role of a "mom" switches to become someone that is so much more. You almost have to lose part of who you were to become this "experienced caregiver". I am a better person now having to go through all this turmoil, but in the beginning I wasn't sure I was going to be able to be the person that these little bodies would need to survive.
As a parent living with Multiple Sclerosis, that has a child with a hereditary blood disorder and another child with severe brain damage from birth, I always kid about becoming a nurse without the degree. It's amazing how one can adapt when given a need.

Our story starts just like the movies. It was a cold and windy October morning and 8 weeks before my due date my water breaks at home after my husband had already left for work. Unsure and scared of what would happen next I was taken to the hospital to do monitoring and check to make sure the lungs of the baby where ready if delivery was going to happen that day. Once all the tests came back that the baby was indeed “ok” the doctors allowed labor to continue. The whole intimate delivery that you were hoping to have with your husband was totally thrown out the door when you have a premature baby. There were SO MANY people in that room, I believe there were 11 people, a team for me and a team for the baby, as we all knew that there was a potential of medical necessity when you deliver a 32 week baby. There was a sigh of relief when I heard it’s a girl and then her wonderful cry. Unfortunately my longing to have her set on my chest after delivery wasn’t an option as she needed to whisped away to the NICU. My beautiful little girl was born and after being in the intensive care unit for 6 weeks to learn how to eat and to teach us how to live with a child that has a blood disorder called Hereditary Spherocytosis, they released her into my care and home we went home. All night I sat and looked at this little girl that was going to require a lot of care and wondered, how could the doctors send her home with me? Having to adapt to her medical diagnosis, ongoing blood draws, and dealing with a jaundice child….I thought I had known it all, boy was I wrong.

Gambling with the fact that our next child would have a 50% chance of having this blood disorder we went ahead and tried for another child, not wanting our daughter to be an only child. We were able to get pregnant right away, which was a HUGE surprise to us as I had thought it would take awhile, as it did with our first. Then the shock hit because I was dealing with being pregnant and having a 6 month old baby that was VERY clingy and requiring a lot of care and attention. I had called this pregnancy my “planned oops” because we got pregnant so soon without having to do any of the strides we needed to do to get pregnant with our daughter.

After a hard and difficult pregnancy the doctors performed an amniocentesis and ultrasound to make sure my sons lungs were “ready” and the next day we decided to induce our labor 3 weeks before the due date. It was just before Christmas so we thought we would have enough time to be home for the holidays. The labor didn't go as smoothly as we would have wished and our son delivered fighting for his life as the doctors performed CPR on my son at the bedside. Day after day we were hoping for the best, but were receiving the worst. We were told he had sustained head trauma during delivery and more test would need to be performed to see at what degree the damage was at. Remember this was a holiday week so things didn't move as fast as we would have hoped for. On Christmas morning, the day of celebration and family, I sit with this little boy clinging to life wondering what next and what did this little being do to deserve this. I was told on that holiday morning that it didn't look good, if he made it to his first birthday it would be a miracle, and I was to prepare to take him home and make him comfortable with the time he had left. He would NEVER walk, talk, feed himself, or communicate is the bomb that dropped over me on this wonderful holiday season. How is a person supposed to act Sad? Mad? Happy? Guilty? This was supposed to be a happy time. My son was still here so why am I not happy? Nothing could be said or done could make me feel or for this to be better.

As I look back now I find those were all feelings I needed to go through to become the parent that these children need. You need to feel everything to possibly understand it. You will never lose the feelings of grief, frustration, and despair but you learn to enjoy what you have, not regret what you weren't given. My children give to me and anyone else who comes in contact with them something that no other can do an appreciation of life and a new dream.

I have learned in this short time there is a purpose to all this. In myself I have found to be a better person looking at the good and living life day to day to its fullest. Life is so unpredictable and I was naive to that. I have met some wonderful people and gone through things I would have probably never had to endure all because of these two wonderful, beautiful, loving children. I make my life the way it is, I chose to become a better person, and I will live on to keep the legacy of my children alive.

What gets me through life's trials and tribulations is that I am not alone in all this there are people out there that need my help and understanding to get through their day. If I can be someone else's ray of hope then to me this is all worth it. In the end I will survive and everyone will know I am and always will be a parent of children with special needs.

“Life is NOT measured by how many breathes we take but how many moments take our breath away”

You wear a suit of armor after you see your child (as they put it in the medical field) “Code Blue”, which means to stop breathing & heart stops/slows down, right in front of you. You realize how much you take, a breath, for granted… something you just assume will always be there, especially in such a young child. Once you see the organized ballet of strangers working so diligently to bring your child back, you understand exactly how precious life is and how fast it can be taken away. I am forever grateful to the dedicated team that allowed me to have more time with my Lil Man and to be able to make more memories with him. I will protect my children with a different sense of life once you experience something like that. I routinely still have to give my kids a kiss, say I Love You and see you in the morning at the end of my day to give me that sense of security that I WILL see them in the morning and IF something should happen in the night they would know I LOVE them. In my sons earlier years I didn’t think he would have gotten this far as he was so ill and with the grim outlook I was given at his birth. One of the hardest decisions of my life was when I put a DNR status on my son, which doesn’t mean Dept. of Natural Resources in my world…….DO NOT RESUSITATE is what DNR means in my world. He struggled for every breath every moment of the day and the doctors didn’t give us an end or fix in sight. I had to step back and ask myself who am I doing this for? I would have been keeping him here for me, and that wasn’t fair to allow him to suffer everyday of his life just so I could have him in my arms. I had to be selfless and not selfish.
Thankfully we chose a different team and facility to help care for him and or The DNR code has been lifted as his quality of life has improved so much and he is back to full code status. There comes a time with a chronically ill child where you have to change your way of thinking from quantity to quality, to make them comfortable and happy with the time that they have. You have to assess what is the right thing for your child and family and make the decisions to the best of your ability as there are no books or guidelines to say if you are doing the right thing with children like mine. You find that even though there is a means and a way in the medical field to “fix” something that it isn’t always the right thing to do. What heavy weights we carry on our shoulders…. Did we do the right thing? Is there more we should do? When is it enough?

Just recently I started to put the pieces of the puzzle together with my son’s delivery. I had read an article that a doctor had shared about his research on children with Hypoxic Ischemic Encephalopathy (meaning lack of blood and oxygen to the brain). Which is the main reason my son has sustained brain damage, now it is trying to find the reasons, WHY? I didn’t really research it as I thought it really didn’t matter how it happened because I was doing everything I could just trying to maintain all the issues that is happening after. Once I read this article on umbilibal cord prolapse it was like a flash back, THAT’S IT. I felt a sigh of relief having the “name” of what happened to him but then this awful feeling of sorrow overcame me. I had this ugly burden that I held onto since his delivery, the secret guilt that I did this to my son, my body hurt him when it was my duty to protect him. Could I have done something more or demanded something sooner, as all I was getting from the medical profession is that they didn’t know what happened and the way they made me feel afterwards I felt devastated. With reading this I could acknowledge within myself that it wasn’t my fault, what a weight that was lifted, almost a gift. I was told I should be a better person not a bitter one, but after you walk in my shoes for just a day then they’ll be able to understand that there are some things I am still VERY bitter about but others I’m so much better.

“The Plan” is something I require to move on and maintain with my family’s well being, but I have an acceptance that the plan will change. It’s amazing how your attitude and way of thinking changes as life presents itself. I said I’d never have a tracheotomy done and I fought it for 5.5 years with my son. It was an agonizing decision to make as the time drew near, until it was time to make the decision. I was very disappointed in the specialists for putting the fear of god in us with the trache and giving us a false impression that it meant end of life. On the contrary because the trache my son will live longer and have a better quality of life and I only kick myself now for not doing it sooner. As long as I see the fight in him or my daughter I will continue to fight for them.

My children’s pediatrician is not only their doctor to us, we see him as part of our family. I truly believe that my family wouldn’t be where we are today without his guidance, understanding, dedication, and “Invested Interest”. He takes on the ones that no one wants… the broken and the difficult. He shows compassion and respect to our children where there is a lack there of with them, even in the medical profession. He’s not afraid to push the envelop with my son when there is a need and he gets the BIG picture with all of issues that are going on. There is an unconditional “care” he has towards his “kids” that I could only hope other doctors could obtain. Fortunately because of him the bar is held high and we are not satisfied with anything less. He has left a permanent mark and we are forever thankful he is in our lives.
“Treat the disease you win some you lose some but treat the person and you’ll win EVERY time!”

My MS Relapse
What a reality check the relapse of my MS had been for me. Since my diagnosis, the symptoms of MS really hadn't affected me other than just an increase in fatigue and some added aches, but you all know me I’ll keep on keeping on. During my sudden relapse my life went into a sudden free fall. It's amazing how fast your life can end up in a tail spin OVER and OVER and OVER again and you wonder when you are going to hit the ground. Just when you think you've been through the ringer enough in your life, BAM another mountain you’re climbing.

I look at my son’s face and I know we are climbing this mountain together more then I had ever thought we would. My New DreaMS !! I am suppose to be the strong one, pulling him through and being his only true one given in life, but the relapse scared me to the depths of the deepest hole. How long would I be able to really BE THERE for my children? My biggest fans :) I love them more then they'll ever know.

I had thought I would be me who just happens to have MS but lately I’ve felt like MS. Once again I have been rocked to my inner core with wondering, "Can I do this". I truly am scared to death to even comprehend "What else" could my family endure. I know this was really my first experience with the hard core symptoms of MS but I can't help finding myself drift to those questions of WHAT will really be taken away from me with this disease and WHEN. I'm finding out you'll never know till it happens with this disease. Maybe this would be so much easier to deal with if I was older in age or maybe if I didn't have those two blue eyes in the wheelchair looking at me, depending on me for EVERYTHING. I had someone ask me early on when my son was born what was I truly afraid of.....if he should die first or if I should die first. That was a no brainer....ME first, as I knew he would be taken care of as long as I was around. With the rapid reaction to my relapse all I could think of was, I might be around but now I might not be able to take care of him....it was killing me. Then I got a grip and understood that there are a lot of parents out there with a disability that are doing an awesome job so I should be able to if that is the path my life starts to head towards.
I do find it disturbing how many friendships/relationships dwindle when you are going through a rough time. The phone just stops ringing and the people just stop coming over. You feel more lost and alone then you ever imagined, as if there is no one you can talk with, cry with, or even rejoice with. Many can’t see the rejoicing when there is a significant chronic illness, but there IS, the sun rises every morning, the moon sets every night, and life still goes on even when you’re “sick”. Try and stay away from toxic relationships that will add stress to your life, no matter how hard it may be. I found our lives to be more peaceful and loving without the drama from family and friends that didn’t get it. Even though it was one of the hardest things to do, during the hardest times in our live, we had to step away from relationships that were making our lives more miserable. It’s their loss really.

Who wouldn’t have “fun” with our dysfunctional family, the 3 D’s ~ Disorder, Disability, and Disease. We now have an extended family of other parents with special needs children, doctors, and nurses that help care for and love my children. Home care nursing is something I swore I would NEVER have as “I could do it” and I had a hard time trying to find where the “mommy” duties stopped and the nurses began. Now that I look back I was so wrong, and I can admit it now. I lost myself in all the cares, I was no longer the person I used to be. I was consumed with ALL my duties. Now that I have let go some of them, but don’t worry I heavily over see EVERYTHING, I can have some ME TIME.

Today is a NEW day and they are working on cure for MS everyday, I can only hope I will be able to see it in my life time. Until then I am going to work hard at making my life choices better and try to fight this! I have done some research on what kind of diet I can do to improve my symptoms. I will continue to take my medicine and treatments when things get bad. I am me who just happens to have MS, I will NOT be MS!

I hear all the time, I know someone who has MS but you'd never know it. I hope I can be that MS person that others talk about, but please understand some days it's all a front and I am just hurting inside. I can't be everything, every time, and I will need help not only physically but emotionally. You my dearest friends and family will be my UP. Please pick me up when I've fallen on the ground. Please pick me UP when my emotions have just crashed. I know I can count on you to be my support and sounding board, but PLEASE don't pity me. I will be strong!!


Justin and Victoria Nelson said...

You have me crying...but mind you, NOT out of pity! But out of complete admiration and respect for you...and for the inspiration you are to mamas like me.
You. Are. Strong.
This was so beautiful. Please continue writing when you find the time. I will be here, waiting to read =)
Love and prayers,

Daniel Siker said...

Lori and Dan and Danny,
I've thought of little else since you left CHW and have read your letter of concerns many times. However your blog and bio are amazing and give me a new insight into your world. Thank you.
My wife has been a major fund raiser for MS and we both have many friends in the struggle. My own research is in prevention of labor induced hypoxic encephalopathy so somehow I feel a much closer kindred spirit to your family.
My love and respect to you all and my renewed regret for May 14. siker53217@yahoo.com

cici said...
This comment has been removed by the author.