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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Please Help....

I know you have your own family and that it's not always easy to give money these days but here's a chance to DIRECTLY help save a child's life!




My wonderful friend, Trisha Knuth, and family are adopting a little boy, Seth, with severe Ep...idermolysis Bullosa. This rare disease occurs because of a missing protein that binds the two layers of skin together. The slightest bump or rub will cause skin to blister and fall off revealing wounds similar to 2nd and 3rd degree burns. Even the inside of the body is affected. EB children endure extreme pain daily. Seth currently lives in a group home and has never had a "constant" person that he can depend on to help him through his difficult life.



In order to adopt Seth, they need to build an home addition to meet his medical needs. Many are already donating their time/labor/skills but they need to raise money for building supplies.



For their story and how you can donate:

http://www.indiegogo.com/A-Bedroom-for-Seth



Trish is no stranger to EB as this will be their second adoption of a child with EB. When they adopted their first son, Charlie, they expected him to die. One year ago today, Charlie had a Stem Cell Transplant. He is one of the first children in the world with this disease that has ever seen such incredible results. No longer does skin fall off, they use 1/100th of the dressings that they used before, and he can enjoy life with out pain like a regular 5 year old boy should. This is why they are so hopeful and eager to adopt again and need your help!



Any amount will help! THANK YOU!

A Bedroom for Seth -- IndieGoGo

www.indiegogo.com

It takes a Village..help me save this boy..See More

A Bedroom for Seth -- IndieGoGo

www.indiegogo.com

It takes a Village..help me save this boy

Bring Seth home....

Help us bring Seth home....

Im asking everyone to please click on the link and read the story.  This little boy has an opportunity to have a home and a family. Can you imagine not being able to have a momma or daddy to love you EVER?  This little boy has the opportunity to never have to feel like that again.  Lets all bring him home....http://www.indiegogo.com/A-Bedroom-for-Seth

YMCA

Say it with me now..YMCA..

Yup, we did it. Ayva and I went to the Y and were given a tour.  Everything seemed so fabulous that we signed up...WHOOT WHOOT...

What are my goals you ask?  5 days a week, yes ladies and gentlmen I said 5.  I have until the beginning of April to be fit and look good...So here goes nothing..We will do this as a family.  My kids are going to be active and we are all going to have fun doing it....

Wish me luck yall....

Lost our first front tooth...

How much money did the Tooth Fairy leave you???

This is her first front tooth lost...YAY....

Testing

So, I added the app to my phone and wanted to try it out ..
Can you see me now?

T

New year new me, new blog....

Its a new year....Every year I say I am going to do something and time gets away from me and I never do it...This year I have decided to become a better person all around. I want to be healthier and happier.  I want to not worry bout the petty things that I do that make me sad. I am tired of having these expectations and when they dont happen my way I am disapointed. SO here it is Blogging peeps...Tif is going to become healthy if it kills her..lol..Can skipping fattning fast food and calorie filled Starbucks really kill me? Well maybe...:) I took the first step last year ( like it was so far away) and quit smoking. Let me tell you, that was the hardest thing ever..OMG...Its been about 4 months and I still fear I could go back but I wont and I cant.  I started to work out but havent been as dedicated as I should be. That will change. I need to lose 30 lbs and have lost 12 but it could be so much better. I want to get to the point where I LOVE to work out. Working out at home sucks.  Its lonely and noone is watching me so I slack more then I would if I was in a class.  So, I am joining the YMCA.  Its so expensive but so worht it for the family..We can go swimming and do some fun things there.  Its the only gym around here with a daycare...Again I will be working out with complete strangers which scares the hell out of me but if I want to be skinny again then it is the price I have to pay...SOOOOO...Today marks the end of the old Tif...I had my Starbucks this morning and made peace with it..It is totally okay with me giving it up.  I made easy mac for lunch and said goodbye to yummy not good for you kids foods.  I did not go to Mc Donalds to say goodbye but after how much fast food I have had recently I am okay with not having it again for awhile....

Next...
I have taken on an amazing volunteer experience and I should be starting in early Feb.  There is an awesome non profit company that does Substance abuse counseling (well they do so much more too) free of charge for people on probation. I used to send clients who couldnt afford counseling there. So when I lost my job (blessing in disquise) I contacted them and asked them how I could help..So thats a fun adventure...

Next...Well I havnt came up with a next but I am sure I will soon....

T

My new dream bedroom

I am a cheap person, I wont deny that.  I like big fancy shiney things, I also wont deny that.  So how can you have all of these when you are poor and cheap?  Like this.....

So I have ALWAYS hated my bedroom. It wasnt a bedroom to me, it was just a room my bed was in. I hated going up there. It had wood paneling and just seemed like dead animals should be hanging on the walls.

You see we have a n attic bedroom and it is odd shaed and just dumb....SOOOOO.....

I got my butt in gear, came up with a plan, and I made it happen.  I now have an amazing bedrrom and I can not wait to get up there and go to bed....

Here is a peak...

I LOVE PINTEREST.....The furniture looks straight out of Pottery Barn...There really isnt anything I did not redo in my bedroom and I didnt go over $200...Go me...

Nighty night all...

T

Youareinvited:WatchMyCard

Youareinvited:WatchMyCard