copying my sister in law

My sister in law updated her blog which was a nice reminder that maybe I should update too! I have been forgetting to blog about anything other than Weston's health in the past 2 years mainly because that is what our life revolves around right now. To be honest, nothing else really seems to matter once you are faced with one of your kids passing away. It just sucks. There is just no way to sugarcoat it. Facing your own mortality is one thing but the thought of losing our child, well, it is just too much to think about. I am getting all of our homeschool materials together. It seems impossible that my big girls are big enough for Kindergarten! It just cannot be true. Right now, I have Ellie, Easton, Avery, and, of course, Weston in PHiladelphia right now. In September, I am planning to bring up the middle kids to start school. Yes, we are starting late but July was such a traumatic month. So, what fun things are the kids up to? Emery, Abby, and Sutton are vacationing with my friend in VA Beach and having a blast. Ellie is busy running, climbing, and being in that fun "in between" 1 and 2 stage. Avery is, of course, busy being the boss. Easton is my sweet love taking care of Weston and looking forward to going to canoe camp next week in Maryland. And, Weston is collecting post cards from all over the world. In family news, Adam went back to TN today to go back to work. We were happy to get to do a speaking engagement with the American Legion and Bella Vita Photography in Harrisburg to announce that Matt will be doing another "Run for Weston" in December. This time, he will be including the military on his trip. I will post more on this later because it is going to be amazing. We already have a lot of people wanting to know how they can help. On Friday, I had the opportunity to speak to the Philadelphia Foundation about our experience with CHOP. By the end, everyone was crying. I am glad that our family is able to make a difference and encourage people to donate to a great hospital.

catching up

I am not doing 20-30. I had ideas for 20 to 30 but that was weeks ago and now they have slipped my mind and then I got busy. Being here with Easton, Weston, and Ellie is a full time job-24/7-no sick days, no breaks. Ellie is almost 9 months old. Her newest thing is that if she doesn't see me, she shrieks. I thought she wasn't going to have stranger anxiety but I was wrong. I am not sure how it is going to go if she goes back to Tennessee for awhile. Adam said he wishes I would let her come back but after Avery basically forgot me and didn't call me Mama for months, I will hang onto Ellie as long as I can. As usual, I miss Adam and the kids back home. They are coming up next week and I am trying to figure out if I could keep one up here with me. Avery came and stayed for 2 weeks and it was very hard but I was glad to see her. Weston isn't doing well enough for me to feel ok to leave him. He has had 2 very hard weeks but seems to be doing better since getting a new broviac. We went and looked at apartments last week. While I love GOL, it is clear that we need a bigger space for my sanity. Imagine yourself in one room with a baby and a 7 year old that talks constantly-all day-everyday-and my only "break" is coming to the hospital where we add in Weston. I never get to have a conversation with anyone without little ears listening. Maybe that is what makes me the most weary? Apartment hunting in the city is interesting-probably because I have never lived in a city apartment. One that we looked at was MUCH nicer than we needed but it was neat to look at-like off of a movie. Adam is coming to do a final walk through of the apartment that I liked the best. It is 3 bedrooms and within walking distance to CHOP which is a huge plus. We are busy planning Halloween, Thanksgiving, and Christmas. Some days, it is overwhelming to think that we are still here. I can't even wrap my head around how we got here. Most days, I wonder how we will function in the regular world after Weston's transplant. One day at a time, right? I know my posts are random and sporadic-that is just how life is right now. My mind goes 90 miles an hour in about 50 different directions.

11 to 20

11) Take more pictures of the kids doing all of the crazy stuff I am afraid I will forget when they get bigger 12) Take more family vacations. 13) Cook more 14) Take a cooking class while I have the chance in Philly. There are many great ones that are just a few hours. 15) Eat better. I already eat pretty clean but I definitely have my bad days like everyone else. 16) Know what is going on in the world. I don't get many opportunities to read the newspaper or watch the news but after all of this with Weston is done, maybe I can make time for that. Probably not but maybe. 17) Let my friends know I care about them. Some have been going through some very hard times and while I pray for them, I don't always let them know that I am thinking about them. 18) Stay at home more. Once we finally get home, I may never want to leave. 19) Teach the kids what they really are excited about. Stop listening to other families on what curriculums to get. Find what is right for them. 20) Let the kids wear princess dresses/superhero costumes to the bank, have spikey colored mohawks, stay up a little late, or sleep in bed with us. They are only little once and I don't think it will scar them for life.

30

So, on Sunday, I am turning 30. We are in such a different place than I ever imagined being. In just the past 4 days, we were told Weston was septic, we got done moving out of my childhood home, and then, today, Ellie was hospitalized. I am looking forward to turning 30. My early 20's were filled with so many ups and downs that I am not wanting to look back. SO-here are the first 10 of 30 things I want to accomplish in my 30's 1) Pray a little more-or a lot more. I find myself praying often but not as much as I should. 2) Love on our kids every minute that I can. It is so hard to get wrapped up in the everyday household tasks. I want to make the most of every minute with our sweet babies. 3) Be a better wife. Right now, especially, Adam and I are so focused on making sure everything is ok with Weston and taking care of the other kids that we don't make time for each other. 4) Learn to love myself. I have confident days and not so confident ones so I am going to focus more on my positives than my negatives especially when it comes to body image. I want to teach our girls to be comfortable in your own skin. 5) Learn to let go. Letting go of my sisters and their craziness, letting go of past issues and regrets, letting go and gaining peace of mind. 6) Talk a little less and listen a little more. 7) Celebrate everyday because we may not be here to celebrate tomorrow. 8) Throw out all of the schedules and live on "Keeton time". 9) Adopt Abby. She deserves a forever home and we are blessed to have been chosen as her second parents. 10) Focus our family on Christian values, love, and traditions. Every year we make new traditions that sometimes I don't think matter to the kids at all but this year, especially, they have remembered just about every tradition and wanted to make sure we did them even while we were here in Philly.

Some days

I try to keep positive about this situation but some days are just too much. It is too much to hear people complain about the ordinary things that happen in life. Your house is a wreck, your kid lost their shoes, you had to take your kids to the doctor, you don't have enough time in the day for whatever it is you want to do, blah, blah, blah, freaking blah. I have a hard time going to the store and seeing how poorly people treat each other. I just want to grab folks and shake them and say "Your life isn't that bad" and drag them to the CICU where Weston fights for his life everyday.

Being in the CICU for almost a year, surrounded by children fighting for every breath, has changed me. Changed what I find interesting in life-changed the things I miss-changed how thankful I should have been for my messy house, cooking dinner, dirty dishes, and wild children. Maybe that was God's plan.

I am finding it hard to talk to my friends. Not that I don't love everyone back home but my trip home made me feel even more like a stranger. It felt empty and sad. I wanted to fly back as soon as I got back to our house because our house didn't feel like home without all of the kids. No one really understands how we live everyday. No one understands the roller coaster of emotions that we go through everyday. Any maybe I sound a little whiney but I just want my baby to get better and for us to go home. I don't even care where that home is (which will be a whole other post for later). I am exhausted emotionally, physically, and socially. I can't even have a real conversation with most people because we no longer have anything in common. I know God has a plan and he never told us it would be easy so I pray for strength.

In kind of good news, we have started some preliminary talks about Weston going to the CCU (the step-down unit from the CICU). I am torn on this decision. It would be great because Weston would have to be completely off the nitric and some of the drips so this would be progress and he would be healthy but he would also have much more freedom and I don't know what would keep him from leaving. I mean, if I go to take a shower, if he isn't connected to his IV pole and nitric tank, what is going to stop him from hopping on the elevator and leaving? The nurses are 1 to 3 which isn't terrible but I still worry. It is just a lot to deal with.

So, my whine fest is over. Thanks for listening.

Philadelphia

Tomorrow marks 10 months of being a Phialdelphian. After all this time, I can do many things within the city. I can ride the bus or train and be kind of accurate when I get off on my stop. I can mark on a map most of the scariest areas because I have been lost more times than I can count. I can name lots of yummy restaurants inside the city-each subdivided by their area. I know I live in Northern Liberties and that the Old City is close by. I found a little corner market to shop at. I can make it to Target, groceries stores, and most other things without the use of the Magellan. These are huge feats for such a huge, confusing place. I am proud of myself.

Adam

I don't write about him nearly enough and maybe, just maybe, I didn't really appreciate him enough until he went back home to TN. Let me start off saying I am not meant to be a single parent-no way. Adam is a great daddy and a loving husband. I know everyone says that about their spouse but not many have been tested as much as Adam and I have. First, he married me knowing that my sisters were insane and we were going to have to care for them for many years. This alone should have made him run away (if you have met them and known the hell and torture they have put us through, you understand). Then, we have tons of kids. I always feel blessed that he comes home right after work excited to see the kids and me. Trust me, by the time he gets home from work, people are crying, the house is dirty, things are a mess. He comes home and dives right in. If I have had a hard day with the baby (whichever baby-there is always a baby) he is the first to let me go take a bath while he takes care of the baby. Cooking, cleaning, whatever I need help with-he is there. I couldn't make it without him. Now, all of this with Weston. It was difficult for Adam to make the decision not to go back to work until Weston was stable. People are quick to say I am a super mama but he deserves a lot of credit. He is such a blessing as a husband and a father. He is my love and I don't tell him nearly enough.