I dreamed a dream

As a girl I dreamed like most girls of the family, the love, the wedding, and lastly the children.  Never in my wildest dreams did I think that life would be such a ride.  I did what most young women do and that is be crazy in my very early 20's, get married young and start having a family.  I married for the wrong reasons not the right one's.  Now yes I did love my ex however I should have walked away all those years ago when I thought he wasn't ready instead of saying yes.  It has however given me my wonderful little boy whom I would not have imagined the way he is at all.  When he was born I was instantly in love, what a gorgeous baby he was.  2 years later life was shattered with his PH diagnosis. 2 years after that my heart breaks again for him.  In the past year he has changed all his medications as others either didn't work or eventually over time they lost their effectiveness.  Adam is now on our last hope and is maxed out so the little stinker has to behave himself! No more burning through meds, or ph crises allowed!!! We have had a tough couple of months and somehow have weathered the storm.  When I look at him the emotions are so conflicting it can be confusing. I look at him in awe with how well he handling his newest medication which is the Sub Q IV 24 hour infusion of Remodulin which is very painful.  He is such a trooper and somehow can still smile through it all.  I also look at him with heart break and tears behind these eyes, he is in so much pain sometimes.  That boy inspires me because no matter how crappy my day I am not battling a terrible disease that will one day most likely win. How do you not break down and cry when your 4 year old begs you to stay home because strapping him into his car seat hurts both his arms so bad. Soon his arms will settle and life will resume.

Turkey Stock

Ok so yesterday I did a very candid and heavy post about what I truly go through with Peanut.  I have lacked on a few recipe posts so here is one for you, especially my girl Candace.  After a turkey dinner this is how you make a home made turkey stock for soups etc.

Strip the meet of the bone of the turkey carcass the best you can
Get an extremely large pot or slow cooker, put the carcass in and cover it completely in water.  You want it submerged
Cut up 1 large carrot, 2 celery stocks and 1/2 an onion and add to the pot
Add in 1 tablespoon of dried parsley
Bring the water to a boil and then reduce to medium and let it simmer preferably while covered
Stir occasionally and eventually the carcass will fall apart
You want it to cook for a min of 8 hours and if the water gets low you will need to add a little bit more
After a min of 8 hours remove from the heat, allow to cool and then strain into a container or another pot and voila you have home made turkey stock!  You can do this with chicken as well to have chicken stock for home made chicken noodle soup, yum yum yum

The candid life of a PAH Mom

With today being World Pulmonary Hypertension Awareness Day I thought I would take a moment to reflect and let you in on our world.  Adam was diagnosed almost 2 years ago and the progression is starting to be noticeable.  Shortness of breath (SOB) are more prevalent, heart/chest pains 3 times in 2 weeks, the need to rest more often and less desire to play outside with friends because he can't seem to keep up.  I get asked the same question all the time, "Shannon how do you do it?" and my answer is always the same "I don't have a choice I just do".  The fact is I do just do everything I possibly can for Adam, remain solid for him and don't let him see how much I hurt watching him.  Every day I fear him dropping from playing too hard, his heart starting to fail and there is nothing left, transplants and then the day that my son breathes easy when he gets his wings.  Every day I wish he could play sports, run around and be a kid and literally grow up to be anything he wants to be.  Every day after he goes to sleep I hold myself and cry as I am living every parents nightmare and I know the only way the fear will go away is if there is a cure found or one of us passes.  I am not the solid rock so many think I am, inside I am a very broken woman who truly wishes the best for her only child.  I am strong for those around me who can't handle the hurt and I am strong for the one who matters the most, the one fighting the battle and the one that one day I know I will have to let go because his pain and suffering will out way my selfishness and hurt and that is Adam.  With every breath he takes he is my hero, with every day he wakes and smiles my heart melts and every day with him is truly a blessing.  He has taught me to live life each day, don't take anything for granted and love like today will be the last we will ever have.  When you have children you think of their futures, holding grandchildren and one day them having to have the pain of saying good bye to you and the world seems so bright and endless.  When I held Adam when he was 2 weeks old and make a pact with him that it was ok for him to grow up because I will do it again as a Grandma little did I know that I will probably never be blessed with that kind of future.  It breaks my entire heart and rips my soul apart to know that one day I will bury my baby long before his time should end.  Scarily today could be our last together, or tomorrow as things can change that quickly.  I know I know people are hit by cars every day, accidents take many too soon and we never know if tomorrow will come, stop and think of how it would feel to truly know that tomorrow could be your child's last as their heart could literally stop as they play outside with their kids, that pneumonia could lead to an episode that is irreversible and they never come out of ICU, that in order for them to live another child must die to give them lungs and hearts and if one doesn't come soon enough an infection from being hooked up to heart machine pumping blood through their body from the outside takes their last breath or that you run out of options all together and you have to watch them slowly dwindle away until there is nothing.  This is the reality that we live in, those are the fears in my heart and mind and that is what divides my soul into a million pieces.  Our children shouldn't know what a lab looks like for blood work, or have appointments every 3 months to make sure that they aren't getting worse, going under in cath labs, take multiple medications a day, oxygen tanks, central lines to the heart or sub q IV's under their skin just so that they can keep breathing and fighting.  I am one of the lucky one's as Adam does very well and was diagnosed so early but because of that the smallest changes in him seem so drastic.  He is now stage 2 out of 4 stages and if he makes it to 3 we will have a hell of a battle on our hands where even eating will wind him.  This means that on my plate IV meds are in our very very near future and it literally crushes me.  I personally know 2 little girls coping very well and doing great on it so they are my inspiration and teach me a lot when it will come time.  Take the time today to learn more about PAH, talk to Dr's, donate to local organizations and research, have an echo done as the earlier you find out the better your chances of survival are.  I know that when Adam takes his last breath it will not be in vain, his was found so early and so much research and notes are being taken while watching him.  I will never stop fighting until the day I die as it is the least I can do for my boy, my one and only and for all those other parents out there living in fear that each precious moment is their last.

Single Mom vs Single Dad grocery shopping

So I am faaarrrr from perfect.  My house is a disaster to spend time with Adam, get work done and try and do anything else on the side.  Today I noticed a big difference in the sexes when it comes to grocery shopping. I was with Adam picking up one of his medications and a few other odds and ends for the week.  Him and I shopping together consisted of a watermelon, a clamshell of strawberries, green onions, celery, granola bars, sweet chili sauce, milk, fruit cups and a bag of chips.  Adam is asking for more chocolate, toys, etc. and I put my foot down after Easter as we have enough for the rest of the year and he has more than enough crap in this house.  I tripped over enough of it coming home lol.  Look over at the Dad shopping with his little girl, total opposite of Adam and I.  He has a stuffed dog on the belt, she is asking for chocolate and he is grabbing her some, there are boxes of Kraft Dinner and Hamburger Helper, vats of detergent and an endless supply of quick and easy pre made meals.  Now I know that this can go both ways but we looked at each other and laughed because there I was meany mommy not letting Adam have anything but fresh fruit and veggies that are on sale, no toys, not chocolates though we did splurge on a bag of chips.  He was letting her do whatever, everything was pre made and not even a banana was being bagged up.  That poor Dad didn't stand a chance with his little girl and Adam didn't stand a chance with his Mom lol. Now I have Kraft Dinner in my cupboards, we had chicken strips and fries for dinner and have eaten our fair share of Chef Boy R Dee but it sure isn't everything that I buy on a shop.  A very interesting moment of two parents with toddlers pushing to get their way and how each of us responded completely differently.

Entertaining Chili Cheese Dip

When having a gathering of people, wanting a delicious snack, or even having a Super Bowl party this dip is a huge hit!!  It is super simple, does not require many ingredients and will get slurped up.  For those who made the chili recipe I shared and froze the extra's then this is even easier!! Please remember this is not the healthiest though there are things you can do to increase the goodness

1 Container of Frozen Chili thawed out or 1 can of Chili

1 container of softened cream cheese (You can use light if wanted)

2 cups grated cheese (Cheddar)

* You can add any other veggies you think will be yummy like red peppers, tomatoes, green onions to add goodness to the dish* Optional

Tortilla Chips

Heat oven to 350 degrees

Heat up the cream cheese in the microwave so that it is easier to spread.

Spread it along the bottom of a baking dish

Spoon the Chili on top of the Cream Cheese

*Add optional veggies*

Sprinkle the Grated Cheese on top

Pop into the oven until the cheese is melted and serve with Tortilla Chips

Seasons of change

Well of course lots of things have happened in the past month and a bit and adjustments have been difficult yet liberating.  Luckily lately Adam's health has been holding up.  There has been some days here and there with chest pains, crankiness and one with sore legs so I will take it.  I was nervous for his last echo due to him not doing well at all and now that we have changed his medication and he is no longer on Bosenten it is like having a different child.  I am looking forward to his echo this month especially after his Cath in February showed positive changes.  While his health is doing well at the moment his emotions have leveled off from his Dad and I separating.  It has been just over a month since I have separated from my husband and it has been a hard road especially since I made the decision to go our separate ways.  Things have started to adjust here, life is going on a straight road and it feels good.  My heart is lighter and I am moving forward not backwards on my journey.  I have been able to do things that I absolutely love and hear no judgement and the best part is that even if there is I don't care.  It feels good that when certain people try to put me down or make fun of me for the things I love that  it has no affect on my mood or my life.  I am embracing my inner geek, enjoying my time alone, watching ridiculous shows, staying in on weekends and connecting with my son.  I just get to breath, be myself and enjoy my life.  It is literally so hard to put into words how lifted and bright life looks.  There has been a lot of tears to get here, lots of inner questioning and anxiety and now it is nice to just start to let it all go.  Life is to be enjoyed and not wasted and I will do whatever I can to do that.  One thing about being a single Mom is trying to find balance for it all.  Having no family here really makes it hard to balance Momdem and Shannon though I am finding my way even if it is stealing time here and there for an hour at night.  The biggest thing is that I have to accept that I can't do it all and this house does fall apart because time with my boy and time to unwind is soooo important.  Watching Adam grow up so far has been amazing.  To see him counting is great, doing his letters and when he gets upset with something hearing him say Oh for goodness sake makes me laugh every time.  He is such a little adult already, 3 going on 18 that kid.  All I know is that if Adam and I keep travelling this road life will be good no matter the direction it turns in.  Time to look for swimming lessons because he keeps telling me that he is such a good swimmer from the last time we went lol. Watching him pop around in his life jacket makes me laugh still cause there he would be on his back screaming for help and I would have to turn him so he was face first in the water.... and then he would pop back onto his back and scream for help again and I was laughing cause it looked awful if someone didn't know he wanted to kick and blow bubbles hahaha Oh the things kids do, I promise I was not trying to drown him I fight far too hard to keep him alive to give up now :)

Lazy Chicken Leftovers!

Soo this is a new one to me and is beyond super easy.  Not the healthiest due to the sodium content so I recommend following up with a nice fresh fruit dessert.  This is for those days when you are lost and need something quick.

What you need
Left Over Chicken, anything at all
1/2 package of mini New Potatoes
1 package of Onion Soup Mix low sodium
1 large Carrot or a handful of baby carrots
1 cup water

In a baking dish mix the onion soup mix and 1 cup of water and shred the chicken in and mix well.  It doesn't matter how much chicken you use.
Cut up your potatoes, you can add as many as you like, Peanut and I only need 1/2 package
Add to the mixture and stir, do the same with the carrots.
Cover and bake at 375 for 30 mins.  Uncover so that the soup thickens to more of a gravy and your carrots and potatoes are tender.

Time to serve and enjoy :)