To my girls

It seems like just yesterday I was breaking it to my mom that I was having a baby. It has been a roller coaster for sure these last 8 years but I can say this for sure, it has been worth every second of it. I am not sure I would change a thing.  I have always wanted to write something to my girls and get out what has ALWAYS been in my head, so here I go. 

To my Girls,
You two are the most amazing accomplishment I have ever achieved in my life. I have never loved anything more then I love you. Graci, you are so smart and beautiful and mom is so proud of all of the hard work you do. The fact that you want to change the world makes my heart melt. You have a heart of gold and I truly hope that you use that to do huge things in your life. Ayva, you are my spunky one. I have a hard time keeping up with you and love that you have such amazing energy. You are truly an amazing little girl and I love how you always want to learn something new. I love how you show affection and have so much love to give.
You two light up my life and have made me who I am today. I wish nothing but amazing things for you and I promise to be here every step of the way. I will hold your hand, wipe your tears, ground you, embarrass you and cry with you because I am your mom and that's what we do.  There are some things you need to know that may help you walk through life. 

1.  Life is hard but it should be fun, Laugh out loud (allot) and have fun.
2. Make the best out of every situation. Please try and see the upside to everything. Bad things are gonna happen and you can sit out and take it or you can jump back up and move on.
3. You will get your heart broken and probably more then once but remember this one thing. Years down the road you will find that boy on whatever social network is popular at the time and see that you dodged a major bullet. 
4. Never give up... If you have a goal go for it. I will always be proud of you for going for what you want and I will always back you up.
5. Its not about how many friends you have its about who those friends are. Friends should always have your back no matter what. 
6. Forgiveness... Forgiveness.... Forgiveness.... Its hard to hold on to anger. Someone may hurt you and you may think it is unforgivable at the time but if it is a true friend it is probably worth working it out. 
7. Say you are sorry when you are sorry. If you hurt someone, say you are sorry. Its hard and sometimes feels impossible but do it. It could make a huge difference in your life.
8. HAVE FUN.... Always have fun. Okay yeah I am repeating myself but I think fun is so important.
9. Know that mom loves you. I know I yell allot and I promise from this day forward to work on that.
10. I know you are going to go out and drink behind my back at some point. Don't go out and try and prove a point your first time ever drinking. All that will get you is a head in the toilet a massive headache and probably a super long grounding. :)
11. Don't do drugs. There is no point. I know you may try and if you are like me you wont like em much.
12. I do not expect straight As and I never will. I only expect that you do your best at everything you do.
13. Be kind to people. Even the ones that are cruel to you. Treat everyone the way you want to be treated. People can be cruel and no matter what don't let them bring you down.

I am sure I am missing so many tips and tricks but we have many many years for me to give you advice. I just want you girls to know that no matter what you do I will always love you. You aren't going to always make the greatest choices out there and we will bump heads allot but when push comes to shove I will always have your back because that's what mommas do.  Always be yourself and do not ever let anyone tell you that you are not good enough because you are. You can be anything you want to do in this world and you can be whatever you want. Hard work will pay off, but always remember who you are and where you came from.  I love you more then life itself.
XOXO MOM

Looking at my life

 

 

With all of the crazy holiday cheer we reflect on life and what we did wrong and what we can change and we make a long list for the start of next year of everything we are going to change...We are going to work out more, we are going to make more money, we are going to eat healthier and blah blah blah. Who actually follows the list for longer then a month? Not I and I am so not making a list this year either..

This year was our first year with just the 4 of us and no guests coming over. I was sad we wouldn't be with our usual company but worried that my family would be bored and this would be considered the worst Christmas ever. I thought that maybe I should plan some fun things, well with me not feeling well all week and stressing over shopping I failed at that one, so we just hung out. We held down the couches, took much needed naps, played a few games and watched dumb movies. To me, it was perfect. 

It never fails someone gets sick and this year it was Ayva. She fell hard too, spending most of the day on the couch.  Me being the amazing momma that I am decided to sit right next to her all day. :) While I sat there I looked around the room and saw Graci glued to her new IPOD and Andy sound asleep scrunched on the smallest couch ever. PERFECT. It was so quiet in my house and all I could do was think about how amazing my life is.

I complain and whine allot, I have daily temper tantrums and many times wish I had more then I have. I find myself sometimes wondering what our life would be like if we would have waited to have kids and you know, paid off college first and worked a few years in our fields we worked so hard to get into, then moments like yesterday hit me and I realize, I wouldn't trade my life for anything in the world.

We did life ass backwards yes I know. We struggle monthly to pay bills, I shop for grocery's at Walmart (yup and I am proud of it), my girls don't have all designer clothes on neither do mom and dad. But, the bills get paid, we never go without, we eat dinner every night as a family and we do things together..  We may not be able to have the weekly date night that I hear about from other moms but we watch pointless TV together every night, and that's my favorite time of the day. My favorite saying EVER is " We may not have it all but together we have it all". what a great saying..

All in all here is my lesson learned.

Yup, I just babbled on about what to you might seem pointless and that is fine. I guess my whole point here is this, life is hard for everyone. We all struggle in some way but none of us are better then the other. Some of us may go out allot and even have kids, so what. Some people don't work out as much as the other, again so what. We are all people and we are all here just trying to make it in life. I know in the beginning of this I said I was not going to make a New Years list but as I finish this I have changed my mind. Here is my list.

1. To be a better person

2. To eat a little better and work out a little more

3. To go out and party more with my friends, well after baby of course

4. To live life to the fullest

 

Yup there is a list and I am going to try and follow it but you know what, if I slack a bit oh well. I am a happy girl and have everything I need. Life is good and I hope in the new year life is good for you all too.  XOXO

 

How do you mommys do it?

Well I will admit it, I suck at this blogging thing..Lets just face it, I haven't followed through with to many things in the last few years of my life. I blame it on being a mom and a wife and trying to be a rock to everyone else. I am a bit lazy, okay lets not lie here I am super lazy, i am always tired and where I have the desire to become a fit and healthy person I just don't have the energy.  Lets be real people, it takes hard work and allot of energy to be physically fit. So how do woman do it? How do they balance being a mom, a wife and everything els all while working out and keeping a killer body?? How do you get everything els done?? 
So what is a woman to do here..??  Maybe I set to many goals at once, or just maybe I expect way to much of myself making these goals unreachable.  So I may just be able to solve my own problem here and not force so much on myself at once. Does my house really need to be cleaned daily? Yes but maybe just a once over not a deep clean.  Can the dishes wait until tomorrow? God yes, it wont kill anyone. So there, I cleared some room on my schedule now I can sleep and work out more..Ha, ha ha.  This makes me giggle because I know what I will do, I will nap or I will clean or I will find something els to do other then work out.  UGH. Such a rut..Okay moms, how do you do it?????????

EB - The Worst Disease You Never Heard Of.

EB - The Worst Disease You Never Heard Of.

Epidermolysis Bullosa (EB) is a rare genetic disorder that is painful and can lead to disability, disfigurement & early death. There is no cure or treatment today. EB makes the skin so fragile that the slightest friction causes blisters and skin tears. The eyes, mouth, throat and other internal organs are also affected. Click here to learn more.

This disease has taken too many babies, and in this past year alone, it has taken Tripp, Bella, Chloe, and too many others to name. it's the most heartbreaking disease, and I can't imagine how any parent can live through this. Imagine your kids, and their ability to run, eat, play, sleep, take a bath, cry, fall down and get a scrape, talk to you, laugh etc. Now imagine that any of those things could take your child away from you, or that because of EB, you might not ever hear what your baby's cry, or laughter or hear them say "Mom" or "Dad", ever. Imagine the slightest brush of skin would cause blisters and infections and could literally kill your child.

My friend Christie is one the most amazing people you would ever want to meet. She dedicates so much of her time, energy, love and more to each of these families, and many, many more to help find a cure for EB. Christiem myself and Team Puck will be raising money to help find a cure for this disease. Right now, trial procedures are being done at the U of M in Minnesota, and the hopes are that one day bone marrow from a person without EB can help a baby or child with EB re-grow new skin that isn't affected by this disease. We need more money to fund more research.

I ask you to PLEASE go to my page  Donate please and donate anything you can. With the help of a grant EVERY dollar you donate will be matched!!! If you donate just $5.00, that will give Team Puck $10.00! It's a win-win.

Please feel free to share, link, email, copy, etc. THIS POST to all of your friends.

Thank you so much, for taking the time to read this, and please, please donate.

Tif...

Sad news

My life has been so insane lately and I am totally looking forward to some down time.  Life seemed to come into perspective last week when I received a phone call that I never ever expected. It was my friends sister. I thought we were talking about buying jewlery when she informed me that Seth died. It didnt register, and she had to repeat it three times. No, this cant be true...How could this be true? He has a cold, kids get colds ad they get better...I must have fallen asleep on the couch and am having a bad dreak right? After al it is nap time...When Ayva came by me asking why I was crying and held my hand I was well aware that this was not a dream and Stacy had given me some awful no good news.  OMG.  Why?  Why does this happen? Why does a little boy who was so close to receiving his family have to lose his life? Why does my friend have to have her heart broken like this and what am I going to tell my kids who have grown to love this little boy that they have never met?  Oh my gosh...
I will never understand and I think this whole community will always have a bit of a heartbreak over this little boy we have never met.  All I keep thinking is my friend is heart broken and there is nothing I can do about it. Nothing I say or do will help make her heart feel better. Please read the beautiful words that she writes about her whole experience and please say a prayer for Seth and the whole Knuth Family.  Trisha sure is my insperation to be a better person.  I have learned that life is short, live it, and be the best you can be and help others when you get the chance. Leave your mark...I know I am never going to take anything for granted anymore, and I am going to have as much fun as I possible can with my kids.  And darn it all, I am going to do the EB run and I am going to run it all...Who is with me??

Written by My dear friend Trisha, and Trish if you are reading this, the world needs more yous...(yeah I am sure that isnt a word)...Love you pretty lady..

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I have not been able to share much of my experience about Seth until now. Because Seth belongs to the State of Washington there are confidentiality laws to protect him. I can share my story with you now. I flew to meet Seth on Feb. 3rd. As soon as I landed in Seattle I immediately got in a rental car and drove to Olympia where he lived. Seth lived in a group home for children who were considered “medically fragile.” Seth’s social worker, and Staff met me. I was nervous. I was not sure how my emotions would react to meeting Seth for the first time. Seth drove out in his electric wheelchair. Large eyes, blonde hair styled in a Mohawk, skinny skinny legs wrapped in dressings, and little fingers poking through thickly wrapped hands. All my nervousness disappeared. He drove up to me. I told him I was in Washington to meet him. I had a little boy with the same kind of skin and I would like to spend some time with him. He said yes. He showed me his bedroom. In the middle of his bed was his “light up turtle.” This turtle lights the ceiling at night with stars and a moon. You can choose 3 different colors of lights. Seth’s favorite was blue. I sent Seth this turtle from Santa Claus at Christmas time. Charlie has the same one in his room. His favorite light is blue…
The next morning I went back to the group home. And the day after that, and the day after that, and so on for ten days. He waited by the window for me to come. I read him books, we made food that he could never eat, I brought him toys, I told him about Charlie and my family, I showed him pictures, and I fell in love with him. I would tell him about the EB Butterfly and the doctors who were working so hard to “make EB go away.” I wanted to give him hope. Real hope.
Seth liked to help by holding things, pouring, stirring, throwing things away. He would follow people around in his chair and ask, “what are you doing?” I brought him “boy things.” I wanted to pretend play with him. He did not know how. I would pretend to be a dinosaur eating other dinosaurs. He would look at me like I was crazy. I would attempt to put legos together. I brought him Star Wars action figures. His favorite was Yoda. I read a whole book to him in the “voice of Yoda.” I had a sore throat for 2 days. He held Yoda in his hand where ever he went. Even in the bathtub. Seth was very quiet and withdrawn. I so badly wanted to see him act goofy, loud, and obnoxious like boys his age should. He had a very dry sense of humor. He was so funny. So funny in an adult kinda way. He has been surrounded by adults his entire short life. So many adults. Adults who were “in charge” of him. So many people who loved him, but wanted to control the way things should be. Too many people. So many in control of Seth that no one ever really was. Decisions had to be sent down a command of people who disagreed often to what was right or wrong, or how things should be done. I often felt like I was intruding on their turf. I was taking away their child. A child they were paid to care for. All I wanted was to make him a home and show him what it was like to have a family who loved him. A real family. Not groups of people paid to care for him.
The night I had to fly back home Seth got sick. His cheeks were rosy and he had a fever. He was admitted to the hospital. That is where I had to tell him I was getting on a plane because it
was time for me to go home. He shook his head and stared straight ahead. I told him to look at me and he did. I told him that I loved him. I loved him so much. And I was coming back. I promised him over and over that I was coming back. I left him the EB Butterfly necklace around the Stuffed Ladybug I gave him. “Please keep this safe.” “When I come back for you, you can give it back to me.” and then I left as he shook his head no. I got home on a Tuesday night. The next day I got an e-mail that Seth got very sick. It was a very vague e-mail. I packed my bags and got right back on a plane back to Seattle. I still could not get too much information because of HIPAA laws which protect the medical information of patients. Even though I was to become his mother….his medical privacy was held from me. I ran through the halls at the hospital to the PICU unit. When I arrived Seth was on a Ventilator and attached to continuous hemodialysis. This scene was the same scene one year ago with Charlie. I was actually relieved to find out that Seth did not have a bacterial infection in his blood, he did not have pneumonia. He had a virus called RSV. I was hopeful that in the coming days the docs could slowly wheen him from the ventilator and he would be fine. I stayed with Seth at the hospital. I guarded him from unknowing hands who inadvertently pulled sheets of skin off with their sticky gloves. He seemed to start and improve. I held his hand, sang to him, and put lavender on his sheets. I whispered in his ear that I was going to make him my son. Even though he was not supposed to know yet. I told him I wanted so badly to be his mommy. I told him about his new bedroom, about the workers putting up the walls. I told him about the village of people who came together for him. People who never met him and loved his already. I told him about his daddy, his brothers Alex and Hunter. I told him about his princess sister Chloe. I know he could hear me….I was not supposed to tell him yet, but I didn’t care. Wednesday night I went back to my room to sleep. He looked peaceful and he looked good. When I came the next morning their was a flurry of activity. The nurse told me that in the night Seth’s blood pressure started to drop. They were giving him medication to keep it up, but they did not think he was going to live. They did a ultrasound of his lungs and stomach. He was full of fluid. Everywhere….there was nothing they could do at this point and his body was shutting down. He had had enough…..I sat with him all day. Groups of nurses who became his family came in to say goodbye all day. Doctors who have cared for him since he was born shed tears. His brother who is 11 even came to say goodbye. I held his hand, wept for him. Finally at the end of the day as the sun began to set his breathing tube was removed. Seth took his final breaths with my head on his. The color drained from his face and he was gone….
I am devastated. I am on a plane back home with a lock of his hair, his armband from the hospital, his ladybug, and his EB butterfly. I am so sad. So so sad….He was so close, so close to having what he deserved to have and it was ripped away from him. I will never understand this. I take comfort knowing that I told him how much I loved him. How much I wanted to be his mommy. I was glad that I could be there for him. As a mom., not a paid employee. I wonder what happens to him now. Where do his remains go when he belongs to the state? What about his things? His favorite books? Will there be a funeral for him? Was he ever baptized? This is so unfair.
There are volunteers at our house right now. Building Seth’s bedroom. These men who work so hard. For nothing. All for a little boy who they never even met. A little boy who has died. His bedroom is still going to be built. We are not changing a thing. He will still have his medical room, bathtub, and bedroom. He is not the first little boy to be born this way and left. He will not be the last. We will be here waiting. We will be ready this time. I will never forget the image of this sweet, gentle, loving little boy who laid his head on my shoulder while I itched his wounded back. I love you Seth . Mommy…….

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