Its been some years

Oh man, I do not even know where I left off way back in 2014. It seems so long ago and so many things have changed. I am not the same person and I have struggled with that lately but I think I am starting to be who i was intended to be.
 We have moved to Florida and well we are getting ready to move again, The kids have grown so much. G is about to enter high school. Ayva is about to go into middle school and baby Liam is finishing KG. Wow I feel old.
Some exciting things for sure have happened and some heartbreaking events have also happened. Things have been rough and not always sunshine and rainbows but at the end of the day we have stuck together and well we made it. I cant tell you enough how grateful I am for the life I have.
In the last year I was diagnosed with Lupus and Fibromyalgia on top of the ITP I have had since I was 15. To say the least it hasn't been fun. The struggle is real y'all.  The pain and the fatigue suck the life right out of me. I went to a very dark place when I first was diagnosed. No I wasn't suicidal but I didn't want anything to do with anything that wasn't right there in my bed. The pain was bad and I was so tired. I couldn't sleep because of the pain but when I did it made me stiff and caused more pain. Such a stupid circle I was in.  I came out of this depressed state and owned the fact that this is the rest of my life and its time to suck it up and deal.  Yes I have tried medicine and no they didn't work. Now I stick to the KETO diet well I call it KETOish because I cheat once in a while and sometimes each some real crappy foods. Its helping and hey I lost 20 lbs so there is that too. There is my sunshine and rainbows part. :)
So, I am going to try this blogging thing out again. Maybe I will stick to it and maybe I wont. Writing seems to be helpful so maybe I will stay for awhile. I can not promise that people will love what I write because well you know me, I speak first think later. Stay tuned for it........ xoxo

Day 4 ( blah)(but good blah)

I NEED SODA NOW.....

This is harder than I thought.

The eating better has gone pretty well. I have not gone over my calories in fact I am under every day but dang it, I NEED A SODA.

I slam two to three Sparks a day so I get my caffeine fix, but I need the taste and the texture. lol. Okay no more dramatics, for real though, it is going well. I have been without a car all week so I haven't made it the gym at all this week or last week. I wouldn't be surprised if there is no change in the scale but I am super excited that I have been able to stay with my goals. That's the whole point of this whole thing after all. Making goals, keeping them and adding to them. I cant wait to sit down this weekend and add to my goals. Hmmm. What should I add?? 

Love life peeps...

T

12 WEEK CHALLENGE

So I am starting a new journey.

Its a 12 week weight loss challenge with 1499 random people I have no clue who they are.

 I am the QUEEN of starting things and not finishing them but this time I am finishing one.

I will make weekly goals instead of life goals that are totally easy to fail at. SO week one starts now (well really yesterday) and my goals are:

WEEK ONE GOALS

• no soda
• drink more water
• work out 4 times this week
• start C25K
• log ALL food into My Fitness Pal (even if I go over)

Simple goals to start. Usually I go balls to the walls and well I last a few days and then I'm like "oooh oreos". This time will be different. Why? Because at this point I hate myself and I need to like myself. I want my girls to see their momma kick ass and follow in my footsteps. So stay tuned, I will not be bombarding my Facebook page because I know how everyone feels about me talking about working out so check back in here...

AHHHH

I love my kids, they are my life but oh this momma needs a break. I need a break from the fighting and the straight up nasty attitudes. I don't get it, I don't understand it and I don't want it....
Dear Summer,
Please come soon. This mom wants to be able to yell " go outside and hurt each other so you don't mess up my house."
Please tell me I am not the only one who wants to kick my kids out of the house??? I will let em in for food, water and the bathroom... I swear...
Thanks, Tif

It's a hell of life

I had every intention to do a year in review this year but I can't. Lets be real here, this last year has been pretty awful. Anything bad that could have happened pretty much did. For 8 months straight Liam woke up every hour and a half all night. This made waking up and taking care of the girls next to impossible. I found myself feeling alone and trapped many days and on the good days, something would happen to ruin it.I was depressed, sad and never felt good enough.We have had more trials and tribulations in this one year than I care to admit but I gotta say this, we are still standing, I am still standing.  Maybe it hasn't been such an awful year, maybe this year was given to us to figure out where our places are in this world. Have I found that place? Heck no, but I am starting to. I am finally learning who I am and becoming who I want to be and modeling that person to my children. I want my kids to grow up knowing they can be who they want and do whatever they want in life.

Maybe if I turn it around and look at what I have gained this year it will seem way more positive.

1. Sure Liam came into our life with a bang, he really is the greatest little miracle ever and doing amazing

2. Even though I had to cut a few people out of my lives I gained some even better ones

3. I learned a lot about family over the last year and that my friends are my family

4. I found a great love for spin class

5. Everyone in my house is healthy and happy

6. My neighborhood has finally became the great one it used to be

And last.. I met some amazing family members who have made a huge impact on my life life just by meeting them once.

So life isn't as bad as I thought it was once I started to see it through not so sleepy eyes. 

 

Focus T25

 

 

Oh my gosh... I have started a new journey and let me tell ya OUCH.. I bought into the hype and I ordered T25. I have never been one to be able to work out on my own at home. I was more into the fitness classes where there are other people in the room and I kept up in fear of looking like an idiot. Well gym memberships are so expensive so I had to get rid of the membership. I tried the whole running thing and that was hard ( I am a wimp). I tried the whole diet thing and well that worked but that was not enough. I have became something I don't want to be weight wise and its time to change that. I know I had three kids and my body took a beating, so what, I know that Liam is only 4 months old but so what, it is not okay. The weight needs to go away....
I have taught myself over the last few weeks how to eat and how to eat healthy. It was hard and well I slip here and there ( maybe a little more then here and there) but it is all a learning process. The weight just isn't coming off as fast as I would like it to.. So here we go. With the support of my hubby the next 60 days of my life will be doing 25 minutes of intense exercises side by side with him. We completed day three last night and well it hurts. Everything hurts, my butt, my legs, my shoulders and my back. That's good though or so I have been told.
I don't want to flood my Facebook with all of my weight loss goals, achievements or struggles so I will do it on here.. NO I promise I will not become some health nut who tries to force it on others. Not at all, everyone is their own person and are free to do what they want. I have just spent so much of the last two years trying to be like others that I lost myself and this is me getting me back.  This blog is about my journey. My Journey as a stay at home mom (not by choice), a wife and how I get back to me.

DAY 1... Gross

Life is hard

Yes it is, Life sure is hard,
The last year has been a tornado for this family. We have been through hell and back but ya know what? We are still standing. It has been tough and there have been great days and awful good for nothing days. We have learned who our true friends are and that family isn't always blood. Most of all we have learned the importance of family and that no matter the distance my family ROCKS...
I truly believe that my family needed these hard lessons and though we are not totally out of the funk we will be soon. Life is hard yes, but it is all about what you make of the hard times that determine how you come out of the crap. I chose to come out of the crap still standing and happy.
I have spent a lot of time thinking and have realized I have became someone I am not really a fan of. I have became unhappy and resentful and I really do not like it. So whats a girl to do? Change this. I refuse to sit around and Facebook status how rough I have it or how its all poor me and stuff. Time for some major life changes,  SO... Out with the negative and in with the positive. Thank you life for the lessons and watch out world here come the NUNENKAMPS....

Pregnancy is so beautiful

Ha, hell no.....

My guess would be that whoever came up with the statement " pregnancy is beautiful " was a man or a delusional woman.  I am having a hard time coming up with a long list of " beautiful" and an easy time coming up with " gross and yuck " well those are my non vulgar words. LOL

So lets see here, this is my list of "beautiful"...

1. The final product of a beautifully bathed baby boy or girl
2. The ability to not feel bad for cashing out a whole bag of potato chips just because you wanted to
3. The wonderful kicks and movements you get to feel...
4. .....
5. .....


Okay that is all I got...

Now lets look at the not so beautiful

Morning Sickness
What an awful name for it because really how many times does it only happen in the am? That would be great if it did because you could make plans around it instead of random " crap I need to run to the rest room and puke"..

Insomnia
Whats this all about? Someone told me that this is so your body gets used to it when baby comes. I mean really, does tossing and turning in your bed all night really prepare you for up every 2 hours to a screaming baby begging for food? Um, nope not even close, totally different. Let us sleep now because it will be at least a year before we know what sleep is again..

BOOBS...
Yeah for those of us who generally do not have any boobs the first few months of pregnancy are great. They grow and you can actually wear a bra and look like you hit puberty, but after like month 6 gross. They are ginormous, covered in veins and lets face it ladies, leaking weird stuff. Yeah that makes one feel a little less then fabulous.  Pregnant boobs are so not attractive, I don't care who says they are..

Weight gain
Bless my hubbies heart for saying ALL the time " honey you are not fat you are pregnant". Okay so this explains why my belly is sticking out so far I can not see my feet but what about the rest? I am pretty sure there is no need for my arms to expand or for my thighs to become unrecognisable but hey maybe there is some reason out there and I have just not found it. 

Heart burn
Holy burning. Need I say more?

GAS....
Yeah I know I know, woman don't have gas. Ha, so not true and even more false when preggers. Nothing like being in a quiet crowded area and OOOPS ... How horrifying right? That's right ladies it happens to us all and you know how you think " maybe no one will know it is me after all there are a ton of people in here" hell no, everyone will blame the preggers one because everyone knows we can not hold it in. Just suck it up and laugh because that is about all you can do.


Advice or should I say to much advice
Everyone has an opinion yes I know but I am not sure it always needs to be stated out loud. Yes I know this bag of chips I am cashing out isn't healthy duh who doesn't. Oh you wouldn't do it this way? Well I will. You wouldn't eat that or drink that? Well I will. Your Dr is doing that, wow that's not safe. I trust in my Dr. You should find a new Dr. Yeah probably not but thanx. Oh my gosh, when that happened to me this went horribly wrong. Stop. I mean stop please.
I appreciate all the advice I can get yes of course but the horror stories or the ones that have a negative outcome can be kept to yourself. I don't need fear I need positive... I understand everyone does things different and the way I do pregnant you may not but its the way I do it and it works for me just like your way worked for you..

The glowing skin
Yup today it glows but tomorrow it may look like  14 year old boy who just hit puberty.

The kicks
This goes is both beautiful and not. The first few months of being able to feel these little kicks and movements are AMAZING but in the final months OMG they hurt. Sometimes I swear he is trying to come out of my bellybutton. I always tell Andy, " when this kid is older I am going to randomly elbow him and just say " paybacks suck"...

I feel like I had more idea while I took that 3 minute shower I was able to take today.  Oh well add to it ladies if you want because I am sure there are way more...
The moral of this long story is this. Yes the end product is an AMAZING cute and cuddly baby that you love and adore. The 9 months it takes to get there well not so amazing. Agree??
XO ~ T

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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Journal Update:

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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