Saturday, August 30, 2014

The Truth about Our Wednesdays

I am not sure if you read this blog because you enjoy our stories or not. Maybe you know me? Maybe this is your first time here via Google? I love to share my insights and blessings with the world because I am truly thankful and want people to learn from my mistakes, enjoy my successes, and be happy/sad with us as we grow into the family we were designed to be. Part of the journey of this family is me, a mom of 3, living with gastroparesis and POTS. (Among other things)



 It is a journey we didn't chose but it is our journey. My friends online know my heart and I am blessed to have them. So blessed. We share our stories and struggles electronically and I love being a digital girl! But I mainly write here for my children. I want them to have a record of my thoughts, raw and in the moment. I want this blog to be a space where they can look back. To me this blog is a modern day baby book. I am happy to share this letter with the public. I want to be real online. I have been told by some that I have to censor my thoughts as my online business may fail if I am to open about the challenges I face. I understand that perspective. I am professional and work very hard daily behind my computer. So hard.

 I also am online because I am real and human and struggle with sickness. That is part of my story. That is why I have readers in the first place because I am available to my readers and I share what is happening with me. Honestly. I have wavered with not saying a word as my health has slipped out of remission. I have a syndrome called POTS which causes me to faint occasionally and I have gastroparesis. My stomach is paralyzed. I look normal. I can even act normal. I can put on a good show some days. I have waited to fully process my progression before I spoke my words here. It has taken close to 9 months.  

For the last 9 months my Wednesdays have been booked. Booked because every Wednesday I go in and get stuck with needles, blood drawn, and doctors to evaluate me. Until now, my boss/bosses have never known and my readers have been mostly left in the dark.

Life continues and so does work. I work hard and hate to think that a vendor may pass me by because of my illness. That would be sad. I have the most loyal readers, likers, YouTube watchers EVER. One reason why is because I am online, real and available, to my readership.  
 

I know my kids will read about our days and adventures to some amazing places we have been. We haven't let our Wednesdays slow us down. We travel around Wednesdays. Making room in our schedules and smile Thursday through Tuesday. I never ever write about them though. What about our Wednesdays? Surely, they are living this with me and although Wednesdays are a tough day in our house I want them to look back at this post and realize how strong they all are. (We all are actually)

To my Kids that Read this in the Future: Mom here. I am starting this blog post on a Monday. I am wearing out but no worry. Wednesday is almost here. As you know Wednesdays are pretty rough in this house.

Every Wednesday, I set out for a round of infusions. This will probably never stop as they are keeping me alive. I am thankful for that and we try not to complain. They pump me full of liquid and as much vitamins as medically possible as the doctors can. I appreciate the staff! (They are awesome) Every Wednesday I look out the same window. It's my window I like to think.

Kids, You make out alright without me at home. This makes me happy yet sad. (Some solace there knowing if anything were to happen to me you guys would be ok) Dad sometimes drives me to the Cancer Center if I am having a bad day but mostly I can drive myself. Those are the good days, the days when I can drive. I do not have cancer. I am thankful for that and pray for those fighting that journey. I am fighting a different battle but right beside them. This battle, for some reason, was chosen for me, us really....our family. We face things together. Every Wednesday my veins are pumped with a liquid cocktail.  Some vitamins cannot be supplemented through IV. I try my best to deal. Protein is what I lack. My body stores my baby weight and I know that Zoey has added on a couple years to my life because she plumped me up a bit. I don't look sick. To many it is a mystery. Some say Gastroparesis is like slowly starving to death.


Sometimes it makes me feel weak. I get sick way too often. I hope you do not remember this part about me. I give blood so freely that I know which veins are a good stick. I wish my blood could benefit someone but it rarely is good enough for me. I hope by the time you guys are older and read this post that you do not remember your father tired and taking care of me on bad days. He loves me in sickness and in health. He recently told us all.  I cannot be the mother I dreamed of being but I am turning into a different kind of mom. I am finally ok and thankful for the mom that I truly am. I hope you are too. I pray about that one daily because I do not compare to what I once was.  I have found some skills that I never knew I had. It was the sickness that taught me these skills. But this letter isn't about me. After all, I have my Wednesday hooked up to a pump and that Wednesday gives me the gift of Thursday-Tuesday with you all. Those days are a gift. By Tuesday I am running on empty. When I am sick in bed I want you to know what I hear. It sounds something like this.


  • ......A big brother that helps with cooking and cleaning. You are an amazing young man. You underestimate yourself. I am convinced you are so strong. (Dude, I can't believe I am your mom. So Awesome!)

  • ....I hear a little big brother middle child that makes everyone giggle and laugh. You bring us some back up relief to a big brother who has excellent project managing skills. You help and do your part. You are so helpful! You keep me company and watch movies with me. I cherish these moments. You also play with your little sister. She is lucky to have you. So am I!
  • ......I hear a little girl. Who gives us hope. She drives us toddler crazy but I love listening from my room as big brothers explain the world, things, and play hide and seek for the 30th million time without being forced. (When Z girl is obviously right underneath the blanket.....again). Z, you are so amused. You bring such an unexpected light to this house. 
  • ....... I hear a husband who is patient and kind. Far from perfect, Wednesday is your day to shine as a dad. I hear your radiant example from bed. I see you entertain our kids and make sure they are all having fun. 




It isn't our problems that define us. It is how we react to them. After all, Wednesdays are our battle days. But everyone has their battles. Wednesdays just happens to be our day on the front line. We all have our own personal Wednesdays, even you reading!  What is your Wednesday? It can come in so many forms. Sickness, addiction, family problems. No one has a life filled of perfect weeks. 

 Dear Kids, one day you will have your own Wednesdays too. I hope I am there for you.  When you look back and read our blog posts about daily adventures, (We have had some great ones) I want you to realize we had our Wednesdays too. We will fight together what comes our way. Wednesdays may be difficult but they are our day of working as a team. 

Each situation teaches us a lesson. As you think back and think about our Wednesdays I want you to see what each one taught you. There is a lesson in here somewhere. We are all getting taught. The question is, when will you learn. May the lessons we are learning today make for a stronger family tomorrow. The truth is, together, Wednesdays do not have anything on us.

Thursday, August 7, 2014

18 Months- Words you can Say and Other things




Zoey,

You are beautiful!  Every day you are on an adventure.  I love you even though you are exhausting always on the go and I hope you love me even though I am tired and having a hard time to catch up.
I wanted to keep you up to date on your favorite words that we can understand.  

Your vocab is increasing daily.  We are having a hard time catching up. 

1. Ohhhhhh
2. Wow
3. Mom
4. Dad
5. Kitty
6. Minnie (you call Mickey Minnie all of the time)
7. Daddy
8. Mommy
9. Ut oh
10. Hi
11. Owwww (you say this for dynamic effect.  You like that we turn our heads to make sure you are ok!) 
12. You Scream (that is not so awesome)
13. You laugh (that is awesome) 
14. You babble a lot (more conversations to come) 
15. You sing "Go" during "Let it Go" in frozen! It is adorable.



You love Strawberry Shortcake and you love the movie Frozen. You like Olaf. Minnie is your favorite though.  

You love playing peek a boo and you love the Patty Cake song.  You are a strong opinionated advocate against the "Wheels on the Bus" on the bus song.  You always leave when I start to sing this.  Maybe it is to long?  I have questions about this!  Maybe you will be able to explain this to me in the future.  

You love your brothers.  N makes you giggle like crazy.  J makes you feel safe.  

Your favorite food might be corn.  I am not sure but this could be because Jersey corn is the best.