Onto the weekend

I am sitting here drinking a glass of wine watching Eat Pray Love again.  Right now in my life if there was no Adam I so would go on an adventure like this as my marriage completely fails.  So my internal question is what kind of adventure and life lessons can I do with Peanut.  Life is going to change drastically from here on out.  Aaron and I have been together for almost 8 years, since we were kids really and married for almost 6 and now we will venture off on our own.  I will still have to be responsible for taking care of Adam, making sure his health is number one as well as everything around me while the other gets to walk or move away.  I have gone into much regarding the failure of things here and I am definitely not innocent in this.  Things have been bad for 3 years and I honestly poured everything I had into this only to then run dry.  I am no longer accepting, trusting, happy, relaxed and welcoming in most aspects of my life and especially to the now ex.  That is a big part of my role and I will have to bear the burden and learn to move on and up from here.  It will be a long time before this ice heart of mine melts and that my walls come down because the only thing I can count on for sure is myself.  With all that has happened my eyes and heart have opened even more to family.  They are truly so important and show so much love.  It is nice to talk to my brother almost every day, see pictures of my niece, talk with my step mom, soon visit with my Dad and still be a part of my in laws life.  2012 is a year of change and reconnecting with what is important to me and family.  Adam needs extra love with everything that he has to go through, when I look at him I see so much light and hope with darkness and fear in the background because his little body is already tested so much.  I will always love Adam, he has always been welcome in my life and will be treasured until the day that him and I can no longer walk this earth together.  Today brought heart ache when you said you never wanted him... you won't spend time with him because you don't care and yet you won't move from this house until YOU are set up with a another new job.... Right now this isn't about us, it is about that precious boy that didn't ask to be born but certainly deserves love.  I will continue to love him with my heart, guide him the best I can and keep my head up through this journey.  We can only go up from here even if this road has a lot of pot holes to deal with first

Times are changing

It is Valentines Day and after spending the evening with my boy I am sitting here alone.  There has been a lot of joy and pain in the past few days that it is amazing that I can continue to hold my head up.  Adam and I were on the news to promote a fantastic event for Children't Wish and then we were apart of the fundraiser as well.  His amazing team Royal Park Realty included us in all the events they could and we had a truly wonderful time.  My heart feels so good seeing people do such amazing things to help a child they have never met.  Our tribe did a great job, raised a ton of money and we are able to have Adam's wish happen this year! The dinner was nice, the entire event was life changing.  That night changed a lot between Aaron and I though.  It was really hard but this weekend we know that we can not stay together.  We are separating as it is not healthy for us to stay together.  The things that have happened are crazy and usually not all of them happen in a marriage, even one of the insane things tends to make a marriage crumble.  It has been 3 years of me pouring my heart and soul into my marriage to have it all taken away and thus things have failed. It is a scary thing to go through as we have been together for almost 8 years going on 6 married. We have a beautiful child  who has major health issue, appointments, medications and needs constant care though is a hyper active turkey too.  I haven't dated in like 8 years and am now in my 30's.... there is a lot to take in and try and deal with and yet I can still go with my head held high.

2012

Well it is 2012 my year of change and moving forward whether or not it hurts and I have to leave those I love behind.  2011 right up until the last minute was one of the worst years of my entire life. It literally could not get any lower.  My marriage was in shambles, New Years Eve brought on even more awful information and my heart couldn't break any further.  Adam wasn't well, low energy, hurting legs, headaches, sensitive ears, cranky, heart pains, blueish hands and feet, shortness of breath and our house was shambles.  January 1, 2012 rolled around and I vowed to make changes, find balance and live life.  If I can't get any lower in my personal life then the only way is up.  If Adam isn't well then we need to live day to it's fullest because you never know, tomorrow could be his last.  With that outlook I go to the gym a couple times a week, 30 mins of a workout does my mind and body wonders and I can confidently make time for myself.  My amazing day time position has increased, I am now recruiting for all positions, we have become very busy and life there is great. My Avon had increased a ton, more reps, more customers and a bit more of a busy life there.  Peanut takes up the rest of my time with either not feeling well, sleeping well or being crazy.  If I can still manage to take in gym time then anyone can.  Baths, tea, wine have all taken a special part in my life and watching movies on Netflix are fitting in to ensuring I am getting time to myself and relax.  We spent a long day at the hospital meeting Adam's new specialist who changed some of his meds as the one was having awful side affects.  Hoping that his blueness goes away, his SOB becomes less and he improves.  He is definitely getting symptoms and with time will progress so each day we need to live life.  He is driving me batty with being over tired all the time, I wanna pull my hair out and create a sleeping bag that velcro's to the wall to make kids go to bed hahaha

Changes

Adam is growing, becoming more independent and such an amazing little man.  He is also vocal, crazy, half monkey like and working on ensuring I go grey.  Such is the life of a toddler to which I am thankful that he is a typical one.  There are some differences for him though, he takes a lot of medications, gets blood work once a month, sees a PH/Cardiologist every 3 months for echo's and ekg's, has had 2 heart cath procedures already with a third this spring, surgery to remove his tonsils and adnoids for his sleep apnea and then emergency surgery when it went wrong and he was bleeding out.  After all this my strong minded little man is a typical toddler.... There are more symptoms than before which is alarming but we knew it was coming.  Adam couldn't remain without symptoms forever... The balancing act of quality of life, typical activities and then invasive treatments is at our doorstep.  How I have all my hair and am not grey is beyond me.  Yes I know I enjoy soaking my hair in pigments and changing it up so that I never see the reality of being 30 however not long ago I was my natural color and was shocked that through all the crap I wasn't a blazing silver Christmas ornament.... This life of mine has not been an easy one, why in the world would I think that having Adam would be an easy venture was beyond me hahaha.  Kids are tough as it is, no ifs ands or buts about it.  The work that goes into loving them, feeding them, clothing them and when they are driving you insane not locking them away until they are 30 or shipping them to a family member in a box takes extreme fortitude.  Now not only do I worry about the normal things of raising a child I have to work to outlive my son.  Every parents nightmare is my reality and tears flow often in this house.  Yes things are good now, Adam runs around, plays, laughs, is absolutely nuts and proudly admits to sticking beads up his nose ending up in the E.R. though I know that this will not last.  There will be limitations and anger that will rise within him and I will need to figure out how to deal with it.  Right now we will enjoy the hot cocoa on our Friday night date nights, popcorn, movies and coming up Christmas, lights, trees, old specials on TV and maybe some eggnog.  All I can do and all that keeps me strong is enjoying the here and the now because down the road it will get bumpy, it will get rough and this way we can look back and smile about how great life truly is when you want to appreciate it.  Adam is a gift in my life as now I treasure every day like tomorrow will be the last and ensure that the quality of life we live is the best we can, even if that means giving up invasive and painful treatments to ensure each day is enjoyable.  Now is the time we enjoy "Adam's Santa" who is apparently bringing him birthday presents and having parties for him...  I want that thought process hahaha

A day

Adam has really taught me a lot over the past year.  Ever since his diagnosis I watch him in awe because he does not let anything slow him down.  His breathing has become heavier as of late but it has not slowed him down.  This tells me the battle is coming but it is not fully here yet.  Earlier this year was rough on him and it is soooo good to see him running around and doing so good.  He has taught me the life is worth living every day, the only ones left hurting are the one's left behind and that there is always hope for the future.  Life has been interesting lately.  Adam has been doing alright, Aaron had lost his job which cause issues but has now recovered and started working at a new job and I have been busy at my amazing job.  It sure has some interesting days of people either showing up an hour early to an interview and expecting to be seen because they showed.... I usually have others scheduled sooo that doesn't work people and I don't recommend it.  Interesting personalities have shown up, some who look like they would waaayyy tooo interesting and really instead of the pink or purple hair, pierced face, torn sneakers with a story and rainbrow bright attire there is no personality there at all.  As someone put it my job is like being the judge of an American Idol yet it's for jobs lol.  We do believe there is a job for everyone out there, though not always through us.  The most interesting part of my job is putting my personal feelings aside and assessing the people I see, they generally don't work with me thus I have to think of everything differently including the dynamic of the job elsewhere.  Needless to say my day is filled with differences all day long.  When I get home it is then filled with Adam!  The crazy, eccentric little boy that is my darling filled with questions.  Yes some days I wish my ears were pencil sharpeners so that I could jam pencils in and not have to listen... however if I really stop and listen it is amazing what he is learning and wanting to learn.

Update on Adam

Well it has been an emotional roller coaster regarding our wonderful son.  Adam has generally been doing really well which gives my heart such a full and happy feeling.  Adam has obviously recovered from his tonsilectomy/Adnoidectomy and has since had 2 echo's that unfortunately show no changes regarding his heart.  We were really hoping that it would make a difference limiting his Obstructive Sleep Apnea and that maybe that was the cause of his disease, or contributing but alas the numbers right now show that isn't the case.  Luckily though things have not worsened just stayed the same.  We have re applied for the inhaled drug that Adam was denied, PHA Canada has spoken with Bayer and they are now trying to get it on a Special list for those who really need this treatment as they have no plans to try and get it approved by Health Canada.  I know a girl in BC got this drug so fingers crossed for Adam he gets it as his other option is to start on IV Medications.  We have just upped his current medications in the hope that it will help as for the first time Adam had some really bad days that had me worried.  I am thinking it is time I get an oxomiter machine to test his levels on days like that to determine if I take him to the hospital for 02 or just lay low.  I am determined to give Adam a typical life that will have hospitals and meds but in all other ways is just another day in the life of a kid.  Health Canada makes me so angry as there are so many other treatments elsewhere in the world that we can't get here that would be beneficial and give children a chance of swimming, normalcy, lack of equipment, tubes, infections, tape and less worry.  Our children are supposed to be getting some of the best treatment in the world and there is so much lacking!  The uncertainty in life makes me cry often as even the idea of a lack of understanding at school makes it hard.  Will Adam be teased for all sorts of medications or as his disease progresses for not being able to do things?  Will teachers understand or will they push him to unsafe levels because it is such a hidden disease.  Will there finally be a treament of the disease in his lifetime or will transplantation be our only true final option?  It is terrifying to think that ultimately in the end replacing his lungs and heart may be the only thing that will allow him into Adulthood.  In every other way Adam is playing, laughing, running, being crazy and finally potty training!  That child has humbeled me in so many ways with always having a smile on his face, wanting to help and pushing through even on those tough days.  I am starting to understand his disease more and more as I connect with more Adults and am now even more understanding to when he whines for no reason or what seems so, his pulmonary cough, his ups and downs in just a day, his sleeplessness, and the crazy "medicine energy" which usually means the next day is going to be a crash.  I was right about how up to 3 weeks after starting a new medication or upping meds makes him a nut bar, apparently that is common.  My now 3 year old is such an amazing child, an inspiring boy and truly the face of how hidden this disease is.  I know as a parent there is always so much uncertainty with their decisions, my hope is that his decisions are what makes life uncertain as opposed to health holding him back.  If my boy has the kindness to now put a bandaid on my forehead to "make me better" from a headache I hope that it continues through life and that he doesn't become juilted with the cards he has been dealt.  If he carries that through his life he will change the way people look at this disease, sick children and give hope to so many that those who have been dealt awful cards can surpass the negativity and embrace the positive.

Contemplating our health care system...

With having a child that has health issues we are literally emersed in Canada's health care system as a way of daily life.  If anyone sees the cracks that crumble in this country is is us, and any other families that have children that have health problems.  I have handled it all with my head held high and been thankful and greatful for what we have and been lucky to be in a city with a world renowed hospital.  Well today that has changed right down to my core.  I sat by when lack of communication cause huge riffs in our family when trying to get Adam's heart surgery planned (which is still on hold atm due to needing more medication to lower his pressures thus making it safer) I was shocked departments all within the same hospital weren't able to communicate with each other, pick up a phone, hell walk down the hall to have a simple conversation.  I was shocked when I found out that out PICU Nurses government funding is so freaking great that they need to buy their OWN pens or pencils to chart our children!  That's right people our Pediatric Intensive Care Unit doens't even supply our Children's nurses with pens or pencils to chart our children's health and progress.  This is the Unit that deal with our Critical Children!!  I dealt with this things and didn't really say too much until now...... There are more things but if I continue on it will take away from a serious issue!! Today our family was informed that Health Canada has denied my baby boy from releasing a life safing drug due to the fact that Bayer will not release it to new patients.  Yup that's right, another kick in the face by the Canadian Government Health sector who apparently it doesn't matter that this will change the life of a toddler who was born with a rare, degenerative, agressive heart disease.  Bayer doesn't want to give my child a reasonably decent life, no instead of providing us with a non invasive treatment they would rather see a central line inserted directly into his heart.  My little man is a very active boy and besides taking 3 heart medication and 2 sleep apnea medications he leads a typical toddler life.  This drug Illoprost would be administered in an inhaled treatment 6 times a day.  Yes that is a bit heavy as he already takes a lot of medicine but it won't hault him from swimming, baths, water parks etc as this other treatment will prevent.  There is another medication that can be taken 4 times inhaled yet thus it is not available in Canada.  So now what the hell do we do?  Give in to a huge drug company who has written off my 3 year old son to make more of a profit?  Who won't give an actual reason as to why they will not provide a non invasive life safing treatment to new PAH patients?  I am hoping that they have a serious change of heart as this little man deserves the world.