Christmas Cards are the WORST

I know lots of people love holiday cards. They like planning their family picture and ordering them and sending them out to grace refrigerators everywhere. I used to really enjoy them. We kept talking about how nice it would be to send one out one year, but just didn’t really get around to it.

Now I regret that a bit. Because I don’t know that I will ever be able to send out a holiday card again.

Because whatever picture we send won’t be a picture of our family. If I send a picture of the four of us when Rowan was alive, it’s a really old picture. It’s not what we look like now. If I send one of Doc, Little Bird, and I…well, someone will always be missing from that photo.

So every time I get a card in the mail I start sobbing. I see all these happy families in all different sizes and shapes and I just grieve for the fact that my happy little family won’t be together like that again. Rowan won’t be sitting on his Dad’s shoulders while Little Bird and I are kicking up snow or some other bull shit holiday meme. No ugly sweaters.

Maybe one day I’ll feel like I will look at a family picture and feel like it’s “ok” or “right”…but I think that years away.

Christmas cards just remind me of why the holidays are so hard and all the beautiful Christmas memories I won’t ever get with my son.

Last Christmas, my son’s chest was open. I could see his lungs and heart. He was paralyzed. He wasn’t breathing on his own. He had 13 different tubes stuck in him.

That’s the only Christmas I got.

It’s heartbreaking.

That’s all.

Get Rid of Dry Skin

Ok, seriously excited about this!

I went to my allergist yesterday for a follow up and mentioned that my skin had been itching like crazy and would occasionally get really red and sort of rashy. I was worried I was allergic to something, but had started no new soaps/detergents/etc.

Dry skin. I’m taking antihistamines to manage my allergic responses while I’m receiving allergy shots and they can dry you out too. Plus it’s winter.

So my doc asked me my routine.

Shower. Lotion (something without fragrance).

His response.

Shower = oil afterwards

Through out the day = lotion

Water removes the oils from our skin so you want to replace the moisture with oil and then the oil also seals the moisture in. During the day, if your skin is dry you want to add moisture by using lotion. So last night I used olive oil after my shower and my arms went from itchy and patchy to 100% soft, smooth, and feeling fine.

Too good a change not to share. I will be trying this thing I read about where you whip oil with a mixer and it turns into a creamier substance (like body butter) that you can use for an easier application.

My favorite thing – evening shower, oil, satin pajamas.

Seriously.

I feel like a queen.

Trying to sort it all out…

So I’ve been writing again. It’s weird to say that looking back there are periods where I don’t know what happened. Events seem so bizarre or non-sensical that I can’t figure out how or why they happened. People’s reactions. Conversations that proved people were blind to what my life was…what Rowan’s life was. I almost felt like two people. There was the me that was living each day – full of light and warmth – content and peaceful. Then there was the me with the angry and bitter inner monologue that hated everyone and everything and resented more harshly than most.

So I’m trying to write it out. Trying to piece things together. What flipped the switch for me? Why did some people do what they did? Why were we so alone for so much of it?

It’s hard to tell. But at least I’m trying again.

It’s easier to understand where you are going if you understand where you’ve been.

So Happy It's Not Considered Crazy

So when someone has recently lost someone very close is just about the only time that hallucinations of any kind are considered totally normal and ok.

I say that so no one responds to this post with "ho damn...she lost her mind".

So let's go with it.

When my Wolfcub left this earth, I felt it. I didn't need Doc to tell me his heart had stopped. I felt his light go away with his last little heart beat. And he was gone. I didn't "feel" him around anymore. Normally I dream and feel those dreams provide guidance and insight. I have had exactly ZERO dreams of him since he passed. I didn't feel him in my home. He was straight up gone from me.

It's really torn me up. When Matt's grandma, a very dear lady to me, passed - I felt her everywhere for several weeks. Still occasionally I feel her. But my own son? Nothing!? WHAT THE HECK!?!?!?

It felt like everything was just completely severed. He was gone. WHY? Was he mad? Was he done with me? Did we just have a good and full goodbye and there was nothing left? Did he hate me for not being able to save him? Was there just nothing left? Was he reincarnated? TRUST ME, I considered every reason. All of them hurt.

So a few nights ago, I had this moment that just let me relax about some of the things I had worried about. Like his stocking. Put it up? Get rid of it? Hide it? Burn it? What do I do with it? We had an empty hook in our stocking arrangement. And my Little Bird, who is so full of light, didn't think a second about running into the closet, and digging out Rowan's stocking and hanging it up. "There! I fixed it!" She yelled. And she was right. I keep thinking I have to make all these big decisions on how we grieve by myself...but we're all doing this together. I finally relaxed a little bit about the next few weeks and all we are going to face.

I went to bed that night, and as I laid down, suddenly it was like there was a whisper on my chest, like a warm light that felt like when Rowan used to place his hand over my heart when I held him. I knew that feeling. And just as fast as I'd felt him leave nearly 4 months ago, it was like this warm light that was full of joy and peace was sending images into my head, images filled with feelings. Messages.

The beautiful red stocking in our family display, with Rowan telling me that he thought it was cool. Little Bird sleeping peacefully in her bed, glowing in the lights of her little tree, hands engulfing a soft little plush wolf - and the sense that he checks up on her frequently, he loves her, and he loves that she has his old things.

Then this image of two wolves, sad, prideful, and longing as a little naked boy said goodbye as he was leaving the jungle, the sound of Doc's voice reading the farewell scene taking place from the Jungle Book, my son acknowledging the connection of the story his father read to him and how it played into his life - showing that he understood as we did, that our Mowgli had to leave the Jungle.

Then my little boy waking up after open heart surgery, intubated, and smiling and near dancing with joy as he woke up and saw his Dad waiting on him. A feeling of pride. Acknowledging the pride his daddy felt for him then and wanting that feeling to be one that lasted forever.

Then it was like I got to ask him questions. I told him how much I missed him and kept wishing to see him places. Of all the times I pictured him with us and life seemed so much happier.

He showed me a glimpse of my brother's wedding, where I was giggling during the ceremony as I realized that the entire audience was standing and that it was adorable. It was as if he had been there laughing in delight too, just stopping in to to watch.

A lot of my thoughts and questions were met with confussion or shrugging, as if he didn't really know or was indifferent. I felt glimpses of other lights - people I'd known who had passed, almost chasing in and out of the conversation. And after all this, I couldn't stop tears from flowing. Since then, it's like I feel his warmth in our home all the time. No more images and certainly not the rapid fire ones - but it's like his light is just hanging out for a while.

Is it crazy? A little, haha. I thought it was weird how similar the whole thing felt to what mediums describe on TV. I honestly don't care if it was real or not. If it IS real or not. It was amazingly beautiful. I needed it. And it makes me feel like the holidays may not be depressing and horrible after all.

I'm thankful for the crazy.

Happy Thanksgiving everyone. I'm thankful to feel the joy and light Rowan brought to my life again.

Milestones

My son died 3 and a half months ago. I still have moments where I just cannot understand how he can not be here. I don't understand why he isn't with me and I'm overwhelmed by the giant hole that will be a part of the rest of my life. When Rowan was sick I used to try to picture him at an event in the future, happy and healthy. That event was my brothers wedding, which took place yesterday. I spent the days leading up to it trying to stay calm and keep the grief at bay while visiting with family. But the day of, I walked into the chapel and it killed me to know that Rowan missed this. Rowan wasn't going to be in pictures. No little tux. Rowan wasn't sitting with his sister in the pews. No pictures of him with the bride and groom. I wanted him to share that beautiful day with us. I had to excuse myself occasionally to go cry for a bit and get it together. This was supposed to be our big Happily Ever After. I was so happy my brother was getting married and so happy to finally have his fiancé become my official sister. It was hard to balance being so happy and so sad at the same time. I tried to do little things to remind me that even though he wasn't physically there, I was carrying him with me. I tied my wolf print necklace to my bridesmaid bouquet so I could rub it when I got sad or nervous.

Between the ceremony and reception, the DJ played a song called Count on Me by Bruno Mars. We sang that song to Rowan all the time. We listened to it on hard drives to the ICU. We played it at his memorial. I lost it. I had to leave and finally let out some of the grief. After that I was able to relax some and just enjoy the reception. The whole wedding was gorgeous. The bride was breathtaking and my dad did a great job with the ceremony. It was nice to have so much of our family together.

This wedding was the first of several Milestones to come. December 10th is Rowan's day of birth, but I don't even know what to write on my calendar, let alone how I am supposed to even be able to breath in and out that day. Then my birthday is the day after. The idea of celebrating it just seems horrifying. Then Little Bird's birthday, Yule, and Christmas with my parents. He won't be there. He won't ever be there. You hope as time passes, each day will get easier. It doesn't seem to be doing that.

Some Thoughts on Helping Those Who Have Lost…

 

One of the things we hear a lot lately is “let me know if there is anything I can do to help.” It’s really nice to know that people are available. While I know that no one else really knows what I am going through in the same sense that I don’t know what my husband is going through, it’s encouraging to be reminded that others are available.  But the question always run into is “available for what?” I don’t think there is anything anyone can do that will make things better.  I mean, sure, I love seeing friends. That is one of the most helpful things is just some quality time with people I love who love me.

So what can you do?

Doc and I were talking about this the other day. There are things that I think people who have experienced any major life change, whether it be loss or something else that is stressful, need to be asked. We ask each other these questions to make sure that we don’t miss anything while being wrapped in our own grief.

Saying “are you ok” or “how are you doing” isn’t really specific enough. People need to have hard questions asked. If someone says “how are you doing?” I don’t know how comfortable they really are with the truth. It’s also really easy for me to say that I’m doing okay, or coping, or making it through each day and avoid talking about anything “real”. You want to make sure someone is really ok? Then ask them these questions.

1.) Are you sleeping at night? – Sleep deprivation leads to crazy. It can make people behave erratically, increase anxiety and depression, cause people to have even more difficulty controlling their emotions and coping with what they feel. If someone isn’t sleeping, this gives you an open door to talk about real issues. “What is making it difficult to sleep? Are you having trouble relaxing? Are you having trouble turning your mind off?” You can talk about things like getting a massage or exercising or even establishing a routine before bed to help them out. Offer your ear if they can’t sleep.

2.) Are you eating enough?/Are you over eating? – Stress eating…man, does junk food make you feel bloated and sleepy and worse? Because it makes me feel that way. When I’m really sad or stressed I forget to eat. Not eating = low energy and grumpiness.  Sometimes a simple reminder that I need to pay attention helps.

3.) Have you thought about hurting yourself? – This is a hard stinking question to ask someone. BUT people need to be asked. What if they are and NO ONE HAS ASKED THEM? I will say that NO ONE but my husband asked me this question. My son died. Someone should ask me this. I think people assume that someone’s friend or someone’s family is paying attention. Don’t assume. Ask. I promise the directness is important. That said…don’t freak out. I haven’t thought about it.

4.) Have you been able to get out of your house much? – For me right now, being reclusive is a defense mechanism. I have to push to make myself get out. It is extremely helpful for me emotionally to spend time with friends or family or to be outside of my home among people. Pulling away from people and wanting some time to yourself aren’t the same thing. It’s nice to be encouraged to remember that I should go take a walk or do something on days it is easier to try to stay in pajamas and watch TV all day instead of getting a move on.

5.) What have you done to take care of yourself? – It’s just important to ask. In my case, I spent so long taking care of someone else that learning how to take care of myself again is a baby step process. I forget that I can do that.

Challenge Week 3: Brussels Sprouts

 

Oh my gosh you guys. Green. Veggie. Heaven.

I kid you not! For a veggie that matched the caliber of broccoli in the school age yuck fest, I CANNOT believe how stinking delicious these teeny tiny baby cabbage are. Seriously, my veggie hating husband requests this dish ALL THE TIME now.

So here it is!

Preheat oven to 300ish. Slice brussels sprouts in half. Coat the bottom of a baking dish with olive oil and then lay the brussels sprouts in the pan flat side down. Salt and pepper them lightly.

Stick em in the oven.

In a little bit, like maybe ten minutes or so, flip the brussels sprouts over. Cook until they are lightly brown around the outside edges.

I like to sprinkle them with a little bit of parmesan cheese, but they are fantastic without it.

Eat a lot of them.

SO easy and these little buddies stay fresh in the fridge for several days so they are now a staple at our house. YUM!!

Piggies and Paws

 

When Rowan was on Hospice, I told you guys about the amazing gift we received from Mended Little Hearts of Tulsa. They wanted to grant us a wish for Rowan since he wasn’t old enough for the Make a Wish Foundation. We ended up asking to have a Piggies and Paws artist come do beautiful hand/footprint art for us so that we would have beautiful images of Rowan’s hand and footprints as well as the rest of our families in our home to celebrate his life. We love that we can show them to Evelyn and that she remembers making them.

Doc and I were talking a lot about ways to raise gift cards. And something popped into my mind. What if we did a Piggies and Paws party! I contacted the artist who amazingly came out on short notice to do the artwork for our family. We worked on some scheduling issues and agreed on a date.

On Nov. 13th from 6-8pm we are having a Piggies and Paws party! I’m asking that everyone who comes brings a gift card for “Admission” that we can donate to families this holiday who have children in the hospital and are away from their homes.

The artwork can be rushed to have it ready in time for Christmas if anyone wants to do these for grandparents (it makes a great gift). The actual artwork ranges in price, from $25 and up. Most of them are around $30 or so.

I do need to know if people are planning on coming so the artist can bring an appropriate amount of supplies.

There will be snacks and such provided as well as toys/activities set up in a different room for children when they aren’t doing their prints.

I hope to see you there!

(You can comment if you are coming, text me, email me, etc.)

It Starts With Me

The more I think about politics and the election I keep thinking that I don't want to need to pick a politician to fix what's wrong in the world around me. I want to change things. I want to personally play a role in seeing the changes in my community that are needed.

My family has been in crisis. We were helped. Yes, the government policies in health care reform helped us. BUT, we never required any additional help from the government because PEOPLE helped us. Friends, family, strangers. They reached out and helped. They took care of us.

Seeing the difference that these people made in our lives has made me feel empowered. I think that college and then the “real world” had disillusioned me a bit. I felt a bit like “what can I do?” but I feel differently now.

I can give money to families in need. I can raise money to help other families in crisis. I can remember my local food banks (especially when there is a sale). I can pick up lost dogs. I can support friends in need. I can volunteer my time. I can continue to do things that matter to me, like support local small business owners by giving them my business.

Wouldn’t it be amazing if we could get to a place where we didn’t have to fight about government assistance because we didn’t need it. What if we helped each other. It’s the ideal world right? Well I’m starting it with me. I’m teaching my daughter. I’m not giving up because even if I can’t change the world, I can change my community. I can make a difference in the lives of my friends and families. That’s how change starts right?

I’m done trying to pick a political candidate I think will help. I can help. I will still make the best decision I can with the election, but I’m not depending on the government to help those in need anymore. I’m depending on me.

Challenge Week 2: Leeks

Okay. This sounded way scarier than it was. Leeks are basically a mellow onion. I decided to sauté them. Martha Stewart’s website had lots of suggestions for cooking leeks. I decided to go with one that was leeks and gala apples. Basically, you cut up the leeks (normally they are bunched in two or three and I found that two leeks was plenty). You cook them for about 6 minutes  until they soften but stir them a lot because they burn really easily.

This smelled up the entire house in the best way. I love the smell of cooking onions, but it’s a bit overwhelming sometimes. Cooking leeks is slightly muted. After you cook the leeks, throw in about 3 gala apples chopped up into little pieces. Cook for about three minutes. Be prepared for something that smells like harvest heaven.

Next, I went once around the pan with Red Wine Vinegar and Honey. Then I salt and peppered it. It was fantastic and oddly filling. This is a side dish I’ll be throwing in frequently this fall. Ms. Martha suggests pairing with pork tenderloin, but I think you could serve this alone with some grilled corn or a baked potato and make a meatless meal out of it.

Leeks: piece of cake. Ready to attempt a soup or something else.

Next week: Chard

A Way to Help

I know it’s still September, but the holidays truly are just around the corner. I know many families plan financially for gift giving and spending that comes around that time of year.

During the holidays last year, we were given a phenomenal gift in our son, and we were overwhelmed by the amount of love and kindness that was shown to us by friends, co-workers, family, and even strangers.

Last holiday season we were separated from our daughter. We left for St. Louis and we had to leave her. It was heart wrenching to know that we were apart for our big family holiday. She spent Christmas at my parent’s house without us. We spent it by our son’s bedside waiting to see if we’d even get to hold him in his lifetime. It sucked. We were worried a little about money because we had to pay to stay in St. Louis while paying for our mortgage, we had to pay for all of our meals at the hospital, and it was really hard to make ourselves leave.

Something that really helped us was receiving gift cards. Being able to leave the hospital for a little bit to recharge and eat somewhere or being able to go to Wal-Mart to buy toiletries since we hadn’t packed enough for three and a half months when we left town…those things mattered. So. Much.

Every time the social worker came by after we’d had bad news, the little Panera card and thought of warm soup some stranger had bought for us made me feel that little flicker of hope, or at least like we could hold out a little longer. Knowing some stranger or some friend was invested in us and wanted to help in whatever way they could kept us from ever feeling completely alone. I want to be able to do that for other families.

This year, as a family, we are collecting and donating gift cards to send to St. Louis Children’s Hospital. We are going to ask that the cards we send be given to families in the Cardiac Units, preferably ones who are out of town.

Friends and family who had thought to send gifts to us, we are asking that you instead send your gifts in the form of gift cards or cash donations to the St Louis Children’s Hospital Foundation. You can view the foundation’s website here.

For Gift Cards, we recommend:

• Panera
• Subway
• Einstein’s Bagels
• Sonic
• Wal-Mart
• Applebee’s
• Target
• Jimmy Johns

With any donation you send (either to us or directly to the hospital) please include a letter stating these things.

• You are donating in memory of Rowan Fowler
• You’d like the money or cards to preferentially benefit families of children who are in the Cardiac units who are away from their families especially during the holidays.
• Your name and address (to allow them to send you a tax receipt should you need one)

If you would like to send your personal gift to the families with heart children in the hospital this holiday season to us, you certainly may. We will be collecting them all through October to send out to St. Louis in early November.

However, you can send the cards directly to the address below:

 

Attn: Karen Rieker

St. Louis Children’s Hospital Foundation

1 Children’s Place

St. Louis, Missouri 63110

 

Please spread the word if you can. I grieve for my son. I grieve that he isn’t a healthy little boy that is here playing with his big sister.  But I pour my grief into helping others. I am so proud of the positive influence my son had on my life. I am proud of the good he brought out in others and the way that people came together. I don’t want the good that he brought out to be undone. I remember my son by helping others. It means a lot to me when others remember him that way too.

Challenge Week 1: The Artichoke

 

Ok, Artichokes are delicious (or at least we like Spinach and Artichoke Dip, right?). But when you see a fresh artichoke in the produce section, you might look at it. You might even pick one up. And you are likely thinking…

“How in the hell do you eat this?” You might flash back to the deep yellow-green hearts you see in dip. You might think “Maybe it’s under the petals?” and attempt to pull a leaf back…and get stabbed by a thorn. Finally, you probably throw the artichoke down and say “SCREW IT! I’ll get some dip at freaking Chilis!” and bail.

Not this week, Artichoke. Not this week.

I found this website after a lot of strenuous researching. (Ok…first hit when I searched “How to cook an artichoke”)

I read it over before I went to the grocery store this week.

I picked a smaller artichoke and some garlic and lemon juice.

Last night, I attempted to cook “the thorny beast” as I will now refer to it.

Following the instructions, I used a pair of kitchen scissors to cut off the thorns that were racking up “pokes”. Pretty easy. Then I tried to cut off the top 3/4 inch. My veggie knife would NOT chop the top off. I even tried a serrated knife. I ended up chopping/sawing/angrily attempting to murder the top 3/4 inches of this thorny beast. It wasn’t pretty but I did eventually get it done!

Now, I don’t have a steaming bowl…so I decided to say screw it! I put the thorny beast in my steamer. I put lemon juice, a chopped glove of garlic and some lemon juice in the water tray that goes underneath the artichoke and set it for 30 minutes. I checked it after twenty and the leaves pealed off perfectly.

I made some basic tsatziki sauce using organic plain yogurt, lemon juice, salt, pepper, dill, cucumber, and garlic. I loved the sauce with the thorny beast. Doc was indifferent. Little Bird was creeped out by the cucumber chunks in it.

That said, we couldn’t finish it. I served it as an appetizer in case it went horrifically in this cooking attempt. I think it could almost be a meal in itself. I’d love to do a thorny beast with some stuffed grape leaves as a great vegetarian meal at some point.

Week 1: Artichoke – SLAIN!

Next week. Ugh….Leeks.

Believe in Your Kid

Ok – sometimes one of the hardest things for me to do as a parent is to sit back and take a deep breath and remember that my daughter can do it.

“It” being whatever we are working on that is draining the life out of me.

For example, naptime on a nap mat for school.

Little Bird went for her first day of preschool this year a little over a week ago. She was very excited. She had her lunch, backpack, nap mat, and blanket.

When I arrived to pick her up, the director of the school stopped me in the middle of the hall (where other parents were picking up children) to tell me that Little Bird was removed from the class for a long period of time because she had a panic attack during naptime.

They suggested half days, where I would pick her up after lunch.

Now, granted, Little Bird does have panic attacks at times ever since we had to leave her in Tulsa for three months while we were with our son in St. Louis last winter. It was hard on us all. In the month since our little boy died, we’ve all been working on readjusting to normal life. Little Bird has a hard time with transitioning from one activity to the next and naptime in particular seems to really stress her out.

I honestly had some major concerns about this preschool before school started. I wanted an academic curriculum for Little Bird that was appropriate for her level of interest and maturity. This preschool, while having learning goals for her class the year before, shifted the focus to religious education in her new class.  We weren’t okay with that. We thought we’d try it and in the meantime, look into other schools.

Then this incident happened.  Honestly, I was upset that Little Bird was pulled from the classroom and no one called me. I was upset that the director talked to me about it in the middle of the hall in front of other parents. I was upset that on THE FIRST DAY they seemed to have written her off as traumatized by her brother’s death and they seemed extremely uncomfortable at the idea of helping her through readjusting to normal life.

Needless to say, I understand that people are uncomfortable with death (though I don’t feel the same way). I understand that the women at this school are not trained in helping a child through grief from loss. That said, Doc and I felt like it was time to find another school. This one was just a bad fit for Little Bird and our family.

I knew that Little Bird could adjust to a new routine. I knew she could “rest” on a nap mat. She just needed some time and some help. While I visited some other schools, we got to work at home.

End Goal: Move from lunchtime to rest time without signs of anxiety or protest. Little Bird will roll out her nap mat, sit or lay on it while quietly resting or reading books for an hour to two hours each day. After rest time, she will roll up her nap mat.

Here’s how it went.

Day 1: Holy nightmare. We rolled out the mat. As soon as she recognized it as the hell mat from preschool she panicked. She refused to sit on it. Didn’t want to touch it. In a calm voice (while frequently picturing the vodka on ice I would be having that evening) I stated “At rest time we must stay on our mat and keep our voices quiet.” I would gentle pick her up and place her back on her mat when she got off.  I stopped counting at the twentieth time I put her on the mat again. Reading books or any other activity was not working. After an hour of her screaming “I DON’T WANT TO TAKE A NAP!!!!!!!!” Little Bird looked at me and told me she was sad that Rowan died, then asked me to hold her while she cried.  Then she sat on the mat quietly for about five minutes and I let her get up. No nap. She did learn how to roll her mat up.

Day 2: Little Bird rolled her mat out. I offered to her that we could watch a movie during rest time, as long as she remained on her mat. She laid down. I played Sleeping Beauty. I held the remote. Every time she got up, I paused the movie and reminded her that “At rest time we must stay on our mat and keep our voices quiet”. Once she returned to the mat and quieted herself, I would resume the movie. She rested through out the movie and then rolled her mat up. No nap.

Day 3: Little Bird rolled her mat out. I told her I was going to read two books. After we listened to the books, we would watch Sleeping Beauty. This day went well. She calmly listened to the story. She stayed on her mat the entire time the movie was on, and rolled it up at the end.

Day 4: Little Bird rolled her mat, picked out a baby to sleep with and laid down. I read two longer books. I told her we would listen to quiet music for five minutes while resting quietly on our mat. After the quiet music we would watch Sleeping Beauty. When the movie was over, she rolled up her mat. No nap.

Day 5: Little Bird rolled out her mat, listened to 3 books, laid quietly while listening to music. After 5 minutes, she got upset and said she didn’t want to take a nap. I explained that she could lay in her bed and take a nap if she was going to be sad and loud or she could quietly lay on her mat and listen to music. (NOTE: NEVER GIVE CHOICES IF YOU AREN’T OKAY WITH BOTH OPTIONS. Both of these got her to rest quietly. Both worked for me and her.) She chose the second, laid down on her mat and TOOK A NAP!!!!!!

Day 6: Little Bird rolled out her mat, listened to two books, and got off the mat to leave the room. I reminded her that “during rest time we must stay on our mat and keep our voices quiet” and she lost it. She got angry and upset, so I told her she needed to lay on her bed. She kept getting out. I kept trying to calmly return her to bed, but she kept screaming. Finally, she stopped and through sobs choked out “Mom, I need to go pee pee, Oh no!” and had an accident.   ….shit.  OK! So NOW I say “During rest time we must stay on our mat and keep our voices quiet, but we can get up if we need to use the bathroom.” I apologized to her for not understanding that she wanted to go to the potty. We cleaned her up, she slept in her bed without complaint after that.

Day 7: Use the potty. Roll out nap mat. Listen to books. Listen to music. Nap. Roll up nap mat. Snack time.

My point is – don’t give up. Don’t think that your kid can’t do something you want them to be able to do. Set a goal. Help them develop a routine. Let them take responsibility (rolling their mat out and putting it up). Expect a few rough days. Remember that they are learning.  Remember to picture nice adult drinks once you handle the “crisis” moments (or bubble baths or whatever is your little ‘unwind’ secret). Don’t give up. Your child is amazing and capable.

Also, we found a school that fits Little Bird and our family perfectly. She is already doing wonderfully in her class and the teachers love her. I seriously don’t think I could have designed a better place for her. Sometimes a school doesn’t fit. Doesn’t mean the people running it are bad or that the school is bad, just means it’s not right for you or yours. So glad we decided to try something different.

Jalapeño Jelly Chicken

 

Ingredients:

1 small pkg chicken breasts of the boneless and skinless variety

5 tsp of dijon mustard

8 tsp of jalepeno jelly (I found it at Reasors)

6 tsp of honey (go local!)

salt and pepper

 

Directions:

Mix the mustard, jelly, and honey in a bowl. Put chicken in pan. Lightly salt/pepper chicken. Pour on sauce. Shove in oven. Preheat to 350, cook for an hour. I used a spoon to “baste” the chicken a couple of times so it had that nice even coating.

Those of you who like honey seared chicken at pei wei…this reminded me of it in the texture of the chicken and sauce.  This chicken however, has no breading.

We did steamed broccoli, cauliflower, and carrots with a small amount of butter as a side, but I think brown rice and edamame would pair well too!

Peach and Bleu Cheese Steak

 

*Bold directions are great for Little Helpers

Ingredients:

1 pkg Bleu Cheese Crumbles

1 peach per steak (but you can ALWAYS eat extra grilled peaches because they are delicious)

Balsamic Vinegar

Salt and Pepper

Ribeye Steak

 

Directions:

Let your rib eye sit on the counter until it is room temperature. I normally skip the salt and pepper when I’m using balsamic vinegar because it is so flavorful, but you can lightly salt and pepper the steaks if you’d like. Otherwise, I put just a few drops of balsamic vinegar on each steak. A little BV goes a long way.

Cut the peaches in half and remove the pit.

Our grill drives me nuts, but I try to turn it on medium heat (whatever that is). Generally, I try to cook out steak about medium. I give it about seven minutes on each side on my grill and that normally does it.

I normally wait about five minutes after the steak goes on and put the peaches on “meat” side down. You want to be able to squeeze the peaches and feel that they are pretty soft.  This for me generally takes about ten minutes.

Put steak on plate. (Tip: Let the steak sit for 5 minutes or so before you plate and serve.  This allows it to reabsorb all the juices. You can then cut off a small piece to make a “mini” steak for kiddos). Slice up peaches into pretty little wedges and arrange prettily so you look like a culinary bad ass. Sprinkle bleu cheese. Oh, hell ya! That’s gorgeous!

Additional awesomeness: You can use this same topping on grilled pork and it’s amazing. You can mix the peaches and blue cheese up with a little BV and freeze it to use as a sauce later on too.

Sausage Pockets

 

*Steps that are bolded are great for Little Helpers

Ingredients:

1 package of sausage (original)

5 or 6 baby bella mushrooms

1 package of feta crumbles (I like to use the flavored garlic and herb feta as a short cut)

2 package of crescent rolls

2 cups of shredded spinach

1 cup shredded mozzarella

*Makes 8 pockets

Directions:

 

Prep (I do this in the morning after breakfast so I don’t have to worry about it):

Cook sausage in a large skillet. When sausage is fully cooked, place on paper towels to absorb extra fat and oil.  Next, slice and firm up the baby portabella mushrooms in the same skillet (using the sausage fat as your oil).  You want them to turn a nice caramelized color. Remove extra oil by allowing them to rest and cool on a paper towel.  Dice the mushrooms and mix in a bowl with the sausage and allow it to cool in the refrigerator until you are ready to actually cook the pockets.

Cook:

Dump feta crumbles and mozzarella in bowl with chilled sausage and mushrooms. Rip spinach into small pieces and toss the entire mixture. It should look super pretty and impressive now.

Open crescent roll package.  You will use two triangles for each pouch.  Lay the two triangles over one another just slightly so that the shape looks more like a square. Using a rolling pin, roll it out a little to de-emphasize the seam.  Spoon filling into the middle, the pull the four corners together and pinch seams. You want a good amount of filling, but don’t overstuff. (Tip, practice with one pocket first to figure out what the “right” amount of filling looks like, then stuff the rest).  Place pockets on a lightly greased cookie sheet.  Preheat the oven to 350 and cool until golden brown (for me it normally takes 15-20 minutes).  Enjoy hot. Wrap up and eat cold or warm as a leftover.

So, my son died…

I realized today while going back over my blog that I hadn’t even posted on this one what happened to Rowan, my little Wolfling.

The long and the short of it is simply that Rowan’s body wasn’t compatible with long term life. We wanted it to be. We did what we could to give him his best chance at a long and happy childhood, and when that was no longer even a remote possibility, we decided to love him and enjoy the time we had left, making it the best possible.

Hospice was not only the right decision for our family, but a beautiful time for our family.  We lived the way I wish we’d always live and know we will continue to live. We loved him. We said goodbye.

He died on July 29th, holding our hands. He died peacefully, free of pain.

My son was a beautiful, amazing little boy that we knew would only be with us for a short time. Kids with his heart defects don’t die of old age. Same for kids with Cystic Fibrosis.

You can read about my little Wolfling on the blog we dedicated to him as we chronicled his short but meaningful life at withineachheart.blogspot.com

One day, I will sit down and write at length about hospice, “allowing” death, and what amazing peace hospice gave us as a family, but for now, this is enough.

Enjoying Dinner…at a restaurant

Last Friday, Doc and I took my sisters and Little Bird to a restaurant.  We had appetizers, dinner, and dessert.  Little Bird did great!

Believe it or not, Little Bird does fantastic at restaurants the majority of the time.

We had a few little training tricks we used to help her become familiar with what is expected at a restaurant.

#1: Eat out at Breakfast! Diners that serve breakfast are a great place to introduce a kiddo to eating out. Morning is Little Bird’s best time of day, so we had her eat with us at BBD (Brookside By Day) on a few mornings. Restaurants are less crowded if you go early and you can take your time explaining how things work.

#2: Explain how things work. “We will be given a table for us to eat at.  We will each sit in our own chair.  In a restaurant, people move around a lot, so we will try to stay in our seat so we don’t fall or knock people over.” As well as, “the waiter will bring us our food.  We have to tell them what we’d like and they will bring it to us when it is ready.”

#3: Have them order. When Evelyn orders her food, she accepts responsibility for that order. It gives her some control. She also orders her drink and says please and thank you to the waiter.

#4: Games. Make shapes with sugar packets (emphasizing that we will have to clean these toys up when the food comes) or stack jellies.  You are teaching your child ways to occupy themselves when waiting is hard. It’s a good trick.

#5: Talk. Have normal conversations about what you will do later that day or that weekend. Involve the kiddos. Talk about the food. What is delicious? What don’t you like very much? Talk about the kind of foods you are eating.

Following these steps have made mealtimes out and about not only relaxing, but FUN!

Sure, every now and then we have a spill, or we have to chase a little girl who is racing for the bathroom, but most of the time…it’s actually nice to take our kid to a restaurant.

Refocus

So, I have made a lot of progress on my goal of finding food sources that are more localized.  This is largely due to using Reasor’s for the food I can’t buy directly from the farmer’s market or butcher.  Reasor’s sells a lot of my favorite steals that are Oklahoma products, including bread made from wheat grown in state.

With that said, we’ve been refocusing our food in our home. Healthier? Not really, we do a pretty good job of that normally.

What we have been doing is making mealtimes family time. No meal takes place away from the table unless it’s a special occasion.  No electronics are allowed whatsoever. We try to eat in courses as often as possible to enjoy the food as well as teach Little Bird how to enjoy food and patiently anticipate the next course.

Little Bird now sets the napkins and plates on the table. She will be working on getting silverware set this week.

She also gets her own drink.

We have one rule: Everyone must try everything.

This rule applies to Little Bird AND Doc.

I’ve been having fun in the kitchen trying new things like Jalepeno Jelly, cooking a whole chicken, stuffed mushrooms, even mini cakes.

We only eat at specific times throughout the day.  Breakfast, Lunch, Snack, Dinner. All take place at the table.  Drinks are allowed whenever anyone wants one.  Drinks being Juice, Water, Milk, Tea, and Coffee.

Doc works a lot this month, so having a meal together at dinner has been priceless.  Little Bird’s conversation skills have skyrocketed.  She is learning summary skills when she tries to relay her day’s happenings to her dad. She is learning courtesy and how to show interest in other’s stories while we talk at the table too.

Little Bird helps me cook most days.  She is really great at pouring in pre-measured items, stirring, and tasting.  She is much more likely to eat things that she helped prepare.

We also “plate”. You can make anything look thirty times more tasty if you arrange it nicely on a plate.

This shift back to our old habits has been highly therapeutic. It’s nice to know that even if the day is hard, we’ll have a nice dinner at the end of it.

COMING SOON: …what to do when dinner goes badly and you have no time to get something together because today was THAT bad.

WARNING: If your kid struggles to eat anything other than cheese or bread or fruit snacks, adopting this way of eating, cooking, etc. takes a few weeks for them to adjust to. Enforce the “try it” rule. They may act like they are going to starve themselves, but eventually most kiddos come around when they figure out what to expect.

Operation BREAK FREE OF CHAINS!

 

Well, I have too much free time on my hands so you know what that means!

HIPPIE CRUSADE TIME!

My new project – BREAK FREE OF CHAINS! …or at least most of them.

I want to stop shopping at Walmarts/Targets/Old Navys/etc.

I don’t expect to do this overnight, so consider this a series.

Step 1: Food

Step 2: Clothing

Step 3: Shelter

Step 4: Misc.

Not all chains are “bad” but I think that if I can throw my money back into the local economy in a more direct way and help the small business owners that are keeping diversity alive in the local market, I’m going to. So here we go!

Step 1 I will be attacking this week!

So long big family dream..

Who has two thumbs and is a cystic fibrosis carrier so can’t have anymore children without running the risk of watching them die slowly too?

This girl.

I officially am a carrier of Cystic Fibrosis.  So is my spouse.  We consider ourselves damn lucky our daughter does not have CF.  We hope she isn’t a carrier.  We will be making permanent changes to insure that we do not have any future biological children.

I’m glad I have my Little Bird.  I am glad I’m getting time with Wolfling.

Hanging on a Thread

This week Doc and I had our carrier test for Cystic Fibrosis done.  We will get the results this week.  If we are both carriers (which is highly likely) we will be shutting to door on having any more biological children permanently.  It’s weird to wait for a test to tell you that….

With the other defects Rowan had, there is a tiny almost non-existant chance that he mutated a gene for CF too…

I guess it will be nice to know for sure.

It’s hard to watch my dream of a big family slowly fade.

Adoption won’t be an option for us so long as we have our two little children.   We won’t qualify.

So we wait.

And The Hippie Returns

I am happy to report that after nearly a year of feeling like I couldn’t embrace my natural/nature loving self, I am back!  We are revamping and recharging our earth loving selves.

Step 1: Fewer toxins around Rowan the better!  He is on a diet of fortified breast milk now, which is wonderful because I was terrified that would never happen.

Step 2: We are simplifying our home by removing allergen collectors.  Goodbye carpet, hello laminate flooring! Easier to clean and healthier for kiddos with allergies.

Step 3: Cleaning products = vinegar and vodka.  Vinegar for normal services.  Vodka for things that need disinfecting.

Step 4: Family cleanse! We are all about local fruits and vegetables. Our paleo diet (we do Monday through Friday) consists of locally grown fruits, veggies, and nuts.  We are buying our meats at local butchers and attempting to do the same for eggs.  No processed anything during diet days.  Weekends off.  It’s working pretty well.  AND Doc and I are doing a 10 day juice fast starting Wednesday.  We plan on fasting while Rowan is in the hospital. 

Step 5: Time outdoors… and we are pushing to do all of that we can.

Simple. Greener. Stronger.  Forward-

Let’s Go Paleo!

So, I’m bored.

Time for a summer fad diet!!!

Why not go Paleo?

Paleo is short for paleolithic which refers to the hunter/gatherer age of humans.  It operates off the idea that evolution has not prepared the human body for the types of food that make up a lot of our diet and that if we eat like our ancestors, we will be stronger and more efficient and skinnier and blah blah blah.

So what do you eat?:

Think caveman! Meat, fish, eggs, fruits, nuts, any veggies that you can eat raw (though you don’t have to)

What do you avoid?

Processed sugars, starches, grains, breads, dairy products, legumes

So we will minimize the amount of the bad things and focus on lots of the good things (oh no! fruits and veggies!)  So today’s menu:

Breakfast – eggs, turkey, cantelope, almonds with dried cranberries and blueberries

Lunch – Salads with spinach, carrots, ham, and turkey

Dinner – grilled chicken with pineapple, red pepper, and brown rice.

Rice being the only baddy in that bunch.

Tomorrow Evelyn and I are going to work out like cavemen…which consists of running like we are being chased by a T-Rex…cuz humans and T-Rexes lived during the same period of time (right young earth creationists?)

FUN!

“Mom Enough”

So, the TIME magazine cover is drawing crazy amount of hype.  While most of the controversy is around the 3 year old that is breast feeding on the cover, I think that the title of the article is what is worth discussing.  That question:

“Are You Mom Enough?”

What a horribly accurate representation of how I feel as a mom.  Before my second child was born, I felt like I could throw a resounding “YES!” at this question and run through the house in my supermom cape.  I felt sexy, sophisticated, professional, and above all, I felt like I was a kick ass mother.

Now…I think there are so many days where I feel like I’m good, but not good enough.  Sure, having a child with extra needs adds some stress, but I think most Moms hit a point where we feel the weight of this question.

Am I doing enough?

Truly, I think my insecurity with this question arises when I look at my two children.  Little Bird, who is a coming into her own as a small adult, and my Wolfling, who is developing quickly now and smiling more everyday.  Managing the high needs of one while trying to meet even the most basic attention needs of the other has been my daily hell.  I constantly feel like I am not doing enough for at least one of my children. 

But, I can’t expect too much of myself, right? I’m only human. 

When we brought Wolfling home, they told us he was too much to care for.  The nursing staff told us that when we couldn’t handle it they’d try to find us other options.

There were no other options for us. He is our son.  He should be here with us no matter what. 

In the beginning we had SO much help.  Meals were brought daily, people ran errands for us, we had visitors to keep me sane…

But we are going on 5 months now, and the help has dwindled.  Most days now, it’s just me.  I get a few hours of sleep at night between returning Little Bird to her bed to replacing Wolfling’s canula and giving meds.  I can only drink so much coffee. …and someone is always crying.

I push myself and PUSH – because my biggest fear is that I will look back in a few months at that question, and my answer will be “no.”  I will have failed Little Bird and she still won’t be potty trained.  I will have failed Wolfling who still won’t eat orally or sit up…

What if I fail my kids?

I have my own situation, but I am sure that there are other mothers out there thinking the same thing.  “Am I Mom Enough?”

And then I remember…my mom is human.  Despite how super human she seems to me, she is a person, with weaknesses and faults.  In my eyes though, she is superwoman.  I’m sure she made mistakes.  I’m sure she felt like she wasn’t doing enough…but I don’t remember my childhood that way.  She always tried.

And so that is my goal.  Am I mom enough?  I hope so. But more than I hope that I am…I hope I can stop thinking about that question.  I don’t have time to feel guilty.  Little Bird will be fine.  Wolfling will be fine.  The only one who will remember this time period and how distraught I felt is me.  I am my own biggest critic.

At 25 I Believe…

I was inspired by President Barack Obama’s speech on Wednesday as well as the hit song “I Believe” from The Book of Mormon currently running on Broadway.  When I think back to me at 20 or even me at 15, I realize that there are a lot of my ideas or beliefs that have evolved.  Something I thought might be fun to do is to track my beliefs over time.  So I am starting this with 25 (a nice round even number).

At 25, I believe:

That all people are entitled to equal treatment by their government.  This includes but is not limited to gays, lesbians, transgendered, black, white, child of illegal immigrant, etc.  Gay marriage and adoption – this means you!

I believe in the separation of church and state.

I believe no one needs a push up bra that add 2 cup sizes. At that point you are wearing a costume.

I believe in holding hands.

I believe organic tomatoes taste better.

I believe in using vinegar or vodka as a house’s primary cleaning products.

I believe in 5th day jeans.

I believe that a woman should have the right to have an elective abortion, while I hope that they do not elect to do so without mitigating circumstances. On that note, I believe in sex education.

I believe knowledge is the sharpest and most effective weapon I can arm myself or my children with.

I believe that I should pay taxes – and a fair amount of them.

I believe that pre-teen TV is complete trash.

I believe in Ron Paul’s Golden Rule foreign policy.

I believe that children in public schools should be exposed to all different ideas – even if they are different from their own – and that our differences should be celebrated and never swept under a rug.

I believe I voted correctly when I cast my first presidential vote for Barack Obama in 2008.

I believe my family can survive anything.

I believe that rib meat is NOT an acceptable way to flavor chicken breast (::cough:: TYSON ::cough:: )

I believe that I will not live in Oklahoma forever.

I believe all parents need locks on their bedroom doors and should make use of them at least three times a week.

I believe that Firefly will be made into an Anime series because all the actors will be too old by the time the series gets a second chance.

I believe nothing is true. Everything is permitted.

I believe I will be fluent in a second language before I die.

I believe by 50, I will have a grandchild.

“But I Bought You an Aquarium Pass…”

The words I thought the first time they told us our wolfcub was likely out of options when he was 1 week old.

So what better “give ‘em hell” way to spend the day before returning to St. Louis than to finally take that trip.  We loaded the whole gang up in the car for the first time and took our first (of many to come) family trip to the Aquarium.

So the Fowlington Four were off on our big adventure to see lots of fish in cages.

Our Little Bird touched a starfish which was a big deal since she doesn’t generally like things that feel “icky”.

 

 Rowan slept most of the time, but we did manage to take a few pictures of him with the different sharks.  The shark tunnel is one of my favorite places at the aquarium.  I could sit in there and watch them swim above me all day long.  I’d love to take a nap there. It’s super peaceful. Plus, I kind of like the fact that my hero looks so peaceful with the ominous shadows of Jurassic monsters in the background.

Stuck

I keep waiting for this to get better or easier or something that feels normal.  Rowan might be improving developmentally, but trying to juggle all of his care providers, therapists, actual medical balance, and daily care requirements hasn’t become anything close to easier. 

I’ve come to finally truly begin to understand that this is a permanent change in my life.  I will always be the one who is his primary caregiver who needs to always be on top of everything.  I will always be the one going to 3 appointments a week or managing new nurses and scheduling therapists.  I will always be tracking diet and weight and medicines for Rowan…and he isn’t my only child.

My life as it was before Rowan is truly gone. The only way it will be “normal” again is if everything goes horribly wrong and I lose him. Not worth normal. Not even a little bit.

When I had Evelyn (I was 23) I was determined to not allow “mothering” to become all I was. I love working. I love doing things. I wanted to continue doing that and just bring Evelyn around – adapt here and there of course – but still stick to “me.”  And we did. We went camping in the Rockies last summer, my 18 month and I (20 weeks pregnant).  We create. We learn. We spend time outdoors and on walks and we enrich our lives.

With Rowan, I don’t know how to do that yet. I haven’t figured out how to be me. Maybe I’ll get there one day – but right now – the old me..the old me can’t be a good mom to Rowan. The new me isn’t as good of one to Evelyn. I’m trying to hold out hope that I can make it through the next few years without totally screwing up my children. Or myself.

But “normal” won’t exist for a long time. We’re stuck with change – and for once, I’m having trouble adapting.

Bringing Up Bebe and Real Simple–A Few Thoughts on American Mothering

While searching for a new read on my Kindle Fire, I stumbled upon “Bringing Up Bebe” in the top purchased section.  After reading the preview, I was sold and quickly read through the entire book.  The author does a fantastic job of utilizing the amazing amount of child development theories and research that has been conducted to explore and expand the differences between the way French parents generally raise their children, and the way Americans do.

What’s the difference to me? The French treat their children as if they are small adults.  They explain rules of life to them and expect them to understand.  If a child cries at night, they are more likely to say “Sweetheart, you must go back to sleep.  It is night and we must all rest so we can work and play tomorrow.”  They would expect the child to realize the sense in this and eventually go back to sleep.  They also emphasize the importance of frustration for their children.  Hunger is frustrating, but they must learn to cope with it until next mealtime. 

This is how I have intuitively parented.  I tried very hard to encourage Little Bird to understand and take care of herself in the ways she is capable of.  We made our house accessible to her almost completely.  We try to encourage her independence and explain her boundaries and constraints to her. 

Some of the things we struggled with were addressed in this book, and I loved it.

For example: Snacking ALL the time and then not eating at meals

The French follow a somewhat national schedule of eating.  4 meals a day – Breakfast, Lunch, Snack, Dinner.  I decided to try this with Little Bird while I was home.  When she asked for a snack I would tell her “It is not time to eat yet.  You have to wait.  When we have lunch you can eat.” Surprisingly, my two year old seemed to understand.  In the week I was home we had no issues and she ate all of her vegetables and “non kid food” items at each meal. This means we no longer need to serve a form of cheese at every single meal.

The other thing I noticed is that the French maintain a personal life while raising their children.  I think the true reason they can do this and enjoy their own pleasures so much is that they do not feel the guilt American mothers tend to feel at delegating.  They hire caregivers or send their children to a form of child care.  They believe it is good for children to socialize and develop their own lives away from their mothers.  In this month’s Real Simple, I was shocked to read some of the statistics for what American mothers feel they can and cannot delegate.  Despite the fact that most of us hate cleaning, 47% of American mothers say they wouldn’t hire a cleaning service, even if they could afford it.  An even greater percentage said they wouldn’t hire child care services even if they could afford it.

So we leave everything to ourselves.  We expect our homes to be spotless, our tables to be set with gourmet, organic, healthy balanced meals, our children to be raised by us and only us, our husbands to be satisfied, and many of us expect ourselves to work a full time job as well.  My question after reading this article was “WHY!?” How neurotic are we?

I love my job.  I’m good at it.  I’m a better mother to my daughter because I take pleasure in working.  I have a break from “mommy” and get to be a professional.  Little Bird loves day care and the time she spends with her grandma.  I enjoy cooking, especially when Little Bird helps me cook and clean.  My entire family enjoys dinners together and my husband and I love swapping stories from our work.  Now, I have a son who has special needs as well.  You BET I will hire someone to clean my home so I can take time to enjoy life and still take pleasure in a cup of tea or a good book or even (yep, I’m going to say it) a bubble bath. You BET I will continue to take my daughter to child care where she can grow and learn with other children. And in the time I get with her, we’ll both be happy to see one another and the time we spend will be richer. 

I think the difference is that American mom’s feel like they need to do everything for everyone and French women aren’t so hard on themselves.  Do the best you can.  Enjoy life – it’s the only one you get. I think American women need to ditch the guilt. After all, guilt is not sexy.  We also need to stop judging everyone so harshly.  We all do it. 

You know what – if you are happy and your children are happy – whatever works.

Am I a bad mom if someone else folds my laundry? Am I a bad wife if my floors were vacuumed by someone else? Am I a bad wife if my husband and I enjoy activities and intrigues while our children are attended to by someone else? I don’t think so.  I think I’m happier, more fulfilled, and generally a better person in all of my life’s capacities.  

I think the book is worth a read for most of us, to fill in holes and present a different style of parenting that affords a little more forgiveness and a better quality of life.  If there is one thing most of us know, it’s that when mom is angry or irritable, the entire family is in for it. Didn’t you have more enjoyment in life when your mom was happy?

Truth is Nothing to Fear

I’ve been thinking a lot about the feeling of apprehension lately.  I remember Wolfcub’s echo when we wanted to see how messed up he really was and if he had a chance.  I remember Little Bird’s when we just wanted to see a heart beating, and not an empty womb.  I remember lots of moments that seemed like they were monumental.  Now we are trying to figure out what problems Wolfcub is having with his heart at this moment. 

The problem exists. There is truth in that there is a problem.  Whatever that problem is will not change based on the tests they do.  When he likely has another cath, I cannot control what they will find.  It’s already there.  I may hope for a certain outcome, but the outcome exists. 

My point is, there is no point to the feeling of apprehension or fear of what they may find.  If it is there, it is there. Knowing about it is just giving us a tool to make decisions about where we go from here.  Wolfcub’s heart problems existed before, during and after the echo. Little Bird’s heart was beating. That little velvet box held an engagement ring and that envelope held an acceptance letter to OSU.  What I wanted or wished for didn’t magically change anything.  You cannot change truth. 

I feel like we should always look for the truth, even if the truth isn’t what we wanted or the truth could be something fearful.  Because even if it wasn’t what we wanted, it is no less real.  You cannot change truth, you can only decide what you will do with knowledge of it. I chose to not look at each situation with apprehension, but eagerness.  I am eager to know the truth so I can be wise in my choices.

Being a Good Parent

I remember a long LONG time ago, when I first became a parent, there were a lot of days that I felt like I wasn’t doing enough. I wasn’t doing word flash cards, or baby sign language, or making all of my kid’s own clothing, or taking her to play dates, or doing enough daily structured exercise.  WOW! What a waste of energy.

You know what I worry about today?

Very little.

Why worry? It doesn’t fix or even improve anything and it is EXHAUSTING.

Am I worried about being a good parent anymore? HECK NO! I am an awesome parent. Only awesome parents can keep their act together through all of this. So screw you Suzy Bakes-A-Lot and Sarah Hand-make-all-my-cards.  You have to do all of that stuff to prove that you are doing enough and that you are a good parent to other parents because, unlike me, you haven’t had an opportunity to really have your parenting tested.

…also, just kidding about the screw you part.  I really like your cute cards and cupcakes…

Friends

To all the wonderful people we truly can call friend, who have stayed with us despite the length of this medical nightmare.  Know that we are ever grateful.  I couldn't have more pride in those around us who have kept us sane and constantly reminded us that though we are physically alone here in St. Louis, we are not forgotten.

My Friends

My friends are the family that truly love me unconditionally.
My friends are the ones I FIGHT beside.
They can be blood
Or not.
They DIVE in when the water is rough.
They don't pity
Or cower.
They LEAP into action.
The don't FEAR what they can or cannot do.
My friends are fierce.
They can CALM you in chaos.
They can soften your HEART in hardships.
But they never stop reminding you
That they are ever present.
Ever reliable.
Ever an EAR
A SHOULDER
An ARM
They do not give up.  They do not abandon.
They don't leave you to fight alone.
My friends aren't familiar with benches
For the sidelines are for strangers.

If I Was Home...

On Friday, it will officially be 2 months since our wolfcub has been in the ICU.

It's really hard to not think about all of the things we are missing out on at home - or even all of the things Little Bird is missing out on because we can't be the best parents for her right now.  Having a sick child makes you think a lot about how "unfair" the situation can be for the healthy child.  If we had been able to stay in Tulsa, this would be a much easier situation for our little girl.  When she's sad, she will say that she wants to go to "our house" and that she doesn't want to stay at HavenHouse anymore.  She talks about missing A.C.E., she asks for her little potty (since we had to put potty training on hold) and she wants to see Baby Rowan all the time, but can't because she's teething and has a runny nose.  When only one of us is with her, she asks for the other. 

Our son is missing out on newborn pictures.  He didn't get to have his 1st Christmas with family.  He didn't get to "go home" with Mom from the hospital or go to his first well-child checks, or get his first bath at home.  We only have a few pictures of him where he doesn't have a sternotomy scar - two pictures for his whole life.  He spent the holidays with his chest open lying sedated on a ventilator.

None of this is fair to my children. 

I think sometimes about the Christmas I'd planned for my family that we didn't have.  We spent Christmas desperately searching for ANY open restaurant or gas station so we could eat a meal and crying because we were so thankful that our son wasn't the one a young family had to say goodbye forever to a few doors down.  He looked angry and hurt when he was awake, and cried silently.

When you've been in the ICU for two months, it's really hard to remember that this is temperary and that children are resilient.  It's hard to feel like this will all be a memory one day and not to feel guilty about the world your children are in.  But I can't think about that.  I have to frame my thoughts differently.  I spend a lot of time refocusing when I start to dwell on things like this.

Two years ago (almost), I was having a really hard time working and taking care of Little Bird while Doc was out of town for a month.  I was frustrated and felt alone, and then I realized that I wasn't being the person I wanted to be.

I wrote in dry erase marker across the mirror:

"Stop bitching.  It isn't sexy."

So I think that quite frequently now, but I've ammended it some.

"Stop bitching, whining, or feeling guilty.  Women who are strong but warm hearted are sexy bad asses.  Be one of those."

I want my daughter to be strong yet full of warmth.  I need to show her what that looks like.  So yeah, it's hard to be in this situation, but - when life challenges you, you rise to the challenge.  Smile and laugh and love despite what horrors come upon you. 

We will go home.  We will have many chances to celebrate the holidays together.  Little Bird will get to be potty trained like she's been asking to.  She'll get to play with baby brother all the time.  We'll play fetch with A.C.E. and read books together and remember that distant memory of that time we all pulled together and came out capable of feeling more joy than we had going in.

If I was in Tulsa, life would be easier. But I'm not. I'm here.  This is an opportunity for me to challenge myself to be strong without letting my heart turn to ice.  But we're crossing milestones now.  He's actually getting better.  And we WILL be home.  Soon. 

Why I Believe Mollie Mills is Changing Lives

We all know that the Obesity Epidemic is something we hear about a lot.  There are all sorts of programs in schools designed to prevent the rising battle with weight even students as young as 5th adn 6th grade are happening.

But I truly believe no program can inspire a child like an honest mentor can.  One of my co-workers, Mollie Mills, is in a contest right now to lose weight and live healthier.  She has been working hard for several months to lose weight through healthy choices and exercise.  This woman has the strength and courage to reach her goal weight and she has even been brave enough to be a leader and share her struggle with her students.

Here you can read what one of her students actually wrote to her.

She is truly inspiring and I believe adults like her are truly the solution to helping children live healthier.  If you agree, all you have to do to vote for her is click the green thumb to "like" her posts.  You can go back through her old ones to vote as well.

Thank you Mollie!

For my Grandfather

My grandpa passed away on Sunday.  I wasn't able to go see him to say goodbye, but I did send him a letter.  I wanted so badly to take Rowan to meet him, and during some of his last few times of being lucid, my grandpa would always ask how Rowan was doing.  I wanted to honor him in his last days by thanking him for what he had given me, and I wanted to honor him now by sharing those gifts with you.


Grandpa,

I wish that I could come and see you in person, but since I cannot make it there, I wanted to send you a letter.  I wanted to say thank you.  Thank you for all of the amazing memories you gave me.  When I think of you, I think of your striped overalls and the apron full of clothespins you’d let me wear when we’d walk down the sidewalk, pulling the wagon, to go hang the clothes on theline.  Even when I was really little, you let me help.  I remember standing by the wagon and handing you a clothespin at a time while you hung up your shirts. 

When my husband and I firstlived in a house, we hung a clothesline in the backyard.  I put my laundry out on the line to dry andevery time I pinned up a shirt, I thought of how much fun I had in your backyard when I was a little girl.

I remember one year, when we had a family reunion at yourhouse, you offered to drive all of us kids around in the wagon attached to the tractor.  You drove us down the hill and around the little pond, and finally, when we reached the other side, drove us all under alow lying branch covered in web worms.  Iremembered that we all screamed and laughed.

I loved running down the big hill and especially loved the tractor rides.  I’d always get nervous and pretend we were crossing a dangerous bridge when we’d go along the narrowpath by the pond.  We saw a deer one time, and every time after that I hoped we’d see one again.  Did you know that Dad now drives Evelyn, his grand-daughter around on the tractor?  He wears a big cowboy hat like you did too.

I remember catching fireflies and putting them in jars inthe summer.

I remember helping in the garden, and the beautiful birdfeeders, and that cat that came around all the time.

I remember when I was older, one night I couldn’t sleep. You were up and sitting at the table eating Quaker Oat Squares.  You told me stories about the farm when youwere growing up.  You’d smile warmly whenyou talked about it and tell me stories about your horse and country life.

I remember the nights you’d build a fire in the fireplace and how magical the fire glow felt.

I remember getting to sing with you at Great-Grandma’snursing home.  You had such a loud, strong voice and you let me sing for the all the people living at the resthome.  I loved the old hymnal songs and feeling like I got to make you proud.
 
I have you to thank for all of those beautiful memories.  I love you grandpa.  I miss you.

Let Go, Let Go, Just Jump In

It's hard to post on this blog very much since so much of my time has been spent carrying for Wolfcub lately.  (We determined little tree was not fitting with his temperament...so we have little bird and wolfcub) But my life has changed quite a bit in the last few months.

Originally, I thought to spare Little Bird all the chaos and changes surrounding Wolfcub's health fiasco.  She stayed with her grandparents in as stable an environment I could control while Doc and I took care of her little brother.  This was fine when the plan was that he would only be hospitalized for a month.  That month expired two weeks ago.  As much as I wanted this to be a glimmer, it's become more than that.  So we've decided to dive into our new life.

Little Bird is living with us at Haven House in St. Louis now (soon to be Ronald McDonald due to our prolonged stay and the cost of Haven House).  Our family is together. Instead of trying to "spare" our daughter, she's a part of it now.  When we thought, "It will be a month.  Then he will come home and she won't know we were gone," I was fine with Little Bird not being involved, but that isn't the case anymore.

So everyday she wakes up, eats breakfast, comes up to spend half an hour with brother, goes to play for a few hours, sees brother again.  Then she eats lunch, sees brother, goes to take a nap - and depending on the day, either comes back up to see him before dinner or plays at HavenHouse with us for the evening.  She listens to Wolfcub's heart with a stethoscope.  She talks to him and shows him toys.  We're making this normal for her.  She gets to help us take care of brother.

I wish I'd trusted that she could handle it and done this from day one.  We showed her a picture of Wolfcub intubated and she got really upset so we shied away from it.  When she saw him in person, all she said was "he's so cute!"