Part Two

We have had Hazel in our home for about 7 weeks now. Yes. Thats right. Poor Erik has been up all night for 7 weeks.  It has been glorious (the cuteness) and horrible (the sensitive stomach) and everything in between. Surprisingly similar to my previous 3 experiences... I forgot what it feels like to be held hostage in my own home!! I am letting this girls suck her thumb to her hearts content and we always make sure she is happy... no matter what!!

We were lucky enough to take her with us to Oahu for Mark & Esme's wedding - something we had been looking forward to for a long time. It did not turn out to be the romantic relaxing vacation we had hoped for, but we got to know Hazel in a way that would not have been possible without the trip. Serious bonding happens in a studio rental over 10 days!! There was a lot of car time, airplane time and middle of the night time!  People were amazed that she sat quietly on the flights, the Pearl Harbor experience, and pretty much all the time. Every time we left our house and she was strapped to Erik's chest, people were MOBBING him. It was great! We have had the most unexpected blessing with Hazel. Our kids who once spent a lot of time away from each other are miraculously spending more time together... huddled around our smiling giggling baby.

I think of her first foster mom often. I know that she and her family did all of the heavy lifting in the first 3 months of Hazel's life. There was a lot of trial and error with formula and feeding and sleep schedules, but they were awesome, and I never doubt that she was loved whole heartedly in those months. 

I was able to see and meet her first family a few times during this process. I am man enough to admit that I wanted something to be wrong with them. I wanted to be able to justify my coming in and taking Hazel from them, but by the end of the process, I knew she would be happy with them. I can't believe I said it. I spent a lot of time making this experience about me and what I wanted.. I didn't have the time or the desire to find out anything about the foster family who took her home. Luckily I am married to a man with an open and loving heart who forced me to see the big picture. Hazel was what was important in all of this, and all that mattered was that she had a family who could love her and take care of her. I can honestly say that we both made peace with idea of her staying where she was. Of course I love the way it turned out, but we knew either way would be great.

I wish everyone could meet the first foster mom. She has become my friend and someone I admire deeply. When DCFS called her to take Hazel, she and her husband initially said no. They already have MANY children and a lot going on - like bags packed in the car for a family vacation across the country kind of stuff.  DCFS made it clear that this might not be a permanent placement because the crazy people (us) were trying to get custody. After a few other unsuccessful attempts to place her, DCFS called her again, and she knew. She knew that this might not be permanent, but that Hazel needed her at that time. What an amazing woman. Whenever I talk to people about foster care, their number one concern is becoming attached to a baby and then losing it.... it is what always stopped Erik and I from doing it. But this mother said yes anyway, and it's why I love her. Each time we met she was loving and kind... I never would have been those things. During those sleepless tear filled nights where I was overcome with sadness, first mom was snuggling our crying baby because she had sensitive stomach, driving to dr appointments, court hearings, and foster care visits with me - visits she could have said no to. Looking back at those long months of not knowing, I can see that there was a plan. That our families were connected all along. Her children were loving Hazel, feeding Hazel, and giving her every ounce of attention that my family couldn't give her. They took vacations to the beach, the neighborhood banded together and gave her everything she needed and her extended family loved Hazel as their own. What more could we have asked for?

The thing I learned from the experience that I didn't want and was sure I wouldn't learn anything from is this:  The reason first mom was able to love me instead of hate me, the reason she was able to take me shopping for baby clothes for the baby she was about to lose, the reason she was able to put Hazel in my arms and say goodbye to her baby was simple. She had a pure love for Hazel and wanted what was best for her. She took the time to get to know my family instead of making the snap judgements that I made. She trusted in her Heavenly Father and his plan for Hazel.

I want Hazel to know this story. I want her to know that she was loved before she was born, and every second after that. I know that the bonding she was able to have during her first 3 months will affect her as she grows, even if it wasn't with me. I hope a small part of her remembers the feelings and smells and sounds from her first home. I imagine that it smelled like cotton candy and sounded like angels singing. . My house smells like burnt toast all the time and sounds like yelling. . I don't want her to remember that.

I know that the thing that happened is what is best for her. I saw it the moment we brought her home and felt the love that she couldn't help but spread. The moment where her biological siblings and grandma got to hold her without the fear of losing her was pure bliss. Knowing that she will have biological sisters to help her with all of the things that I can't is a blessing - that doesn't happen in foster care very often. And as I write this I feel like I have told as much of her story as I want to... It's time to look forward to the day that we get to change her funny name and make everything official. Until then, I will just document the new adventure my family is embarking on!

The Madness

I'm not sure how to begin this post... Here are the points I hope to cover: I'm old. I'm tired. I'm happy.

About 5 months ago I was welcoming people In to one of my paint classes. I had a few minutes before go time and the phone rang. I wasn't expecting a long conversation, so I picked up and our lives changed forever. Needless to say, the class was a mess. I couldn't keep my thoughts straight and kept apologizing for my scatterbrain. I finally made it home and my phone was filled with missed calls and text messages. We're Erik and I interested in adopting a baby??

Crazy, right?? I'm 40 you guys! My youngest child is 10, and my life is kinda easy. I have moved so far away from the baby phase that I still ooh and ahhh over nursing covers and vibrating swings - products that did not exist when I was last caring for a baby. But something inside me knew that I needed to say yes. In fact it never crossed my mind to say no. I had a long list of reasons to walk away, first and foremost my illness. I was coming off a two year clinical trial and was still awaiting the results, but I felt better than I had in years. I also worried about how my other kids would handle the change - I didn't want to disrupt their lives for no reason.

I won't go into all the details since the process is not finished - I will just talk about what I can. We knew of a family who came to Utah as refugees. My aunt is in their ward and has taken on the task of being their main source of help in assimilating. A few of the children have had trouble making their new lives work and have made some bad decisions along the way. Baby H's mother became pregnant and wanted to give her baby up for adoption, knowing that she would not be able to take care of her. She had already lost custody of 2 previous children and knew she wanted to go a different way. We met her a few times and kept in close contact with baby H's grandmother and the rest
of the family, including baby H's two other siblings. We all waited impatiently, hoping the mother would be able to stay clean and deliver a healthy baby.

We prepared as best we could. We kept in touch with the birth family and had all the legalities taken care of by my brother, Joey. (I will insert an advertisement for his services here. He is a GREAT attorney who learned every  thing possible about adoption law in a hurry. It became a huge advantage later in the story) We  told  family members and close friends - getting mixed reactions that made me question my sanity along the way. Despite other people's opinions, the feeling I had for this baby never changed - we knew she was suppose to come home with us. A million bad things happened before H made it into the world. Endless nights of worry - wondering if she would make it through the pregnancy safely. The two weeks before her arrival no one knew where the birth mother was. She finally made her way home and gave birth. This is a story in its own right - one that I will keep to myself.  All of the best plans and hopes were dashed when the birth mom changed her mind just hours before the papers were to be finalized. We returned home totally heartbroken. The birth mothers family was just as devastated and it would only get worse.

I know now that very few adoptions ever go as planned. We were young (not) and naive, thinking that we would be the exception to this rule. Because it felt so right to me I could not understand why it was not happening. Why had I felt so strongly about this baby?? The news came quickly that baby H had tested positive for drugs. The birth mother bolted and DCFS swooped in and took custody of the baby. We were left with no understanding and lots of anger.

I will fast forward through what I could turn into a fifty page essay on how unfair I felt life was. It would be a grand story of how I lost my faith and layed on the floor of Baby H's room for days wondering how my instincts could have been so wrong. And then hope flickered. During those dark days my aunt Susan had been tirelessly fighting the system without our knowledge, preparing the path. The miracles started to happen.

We were finally able to get DCFS to meet with us. Once they understood the situation things changed. I felt like after weeks of screaming in a dark empty room someone finally listened. Because there was a language and culture barrier, things had been difficult for them to understand as well. After our first meeting I learned a few things. First of all, the government is S L O W. We had to wait for everything... Hearings, visitations, paperwork, everything. But I saw something cool while I was forced to wait. The caseworkers were so overloaded with horrific situations - ours was different. Many of the workers told us that they had never seen a case like this - where so many good  people wanted baby H. She had been placed in a truly amazing foster home after her short detox. ( I will have to write a separate post about this part because it is beautiful and miraculous.)  Erik and I were also able to see inside the foster care system. The amount of abuse and neglect out there is so much worse than I knew. So many other children were waiting for safe homes - baby H was lucky.

Anyway, DCFS and Utah Foster Care ended up being the opposite of what I had always believed. We were able to become foster parents in record time. Everything that never happens fell right into place despite all of the roadblocks. I kind of hate to admit it, but the feelings I had for baby H were right all along, I just didn't get to pick the circumstances in which she came - I didn't get to have control. In the two and a half months after her birth I was forced to take time to think about my decision. I was forced to be patient. I was forced to accept that I am not in control and that no one person made this possible. We promised ourselves that we would do everything we could to be ready, and Heavenly Father would do the rest. As we left the last court hearing without the baby, Erik and I felt peace knowing baby H would be loved and cared for no matter what ended up happening. The foster mother conveyed those same feelings to me as we hugged and cried together.

As it stands, she is here with us. The adoption is in place and we are moving forward without fear that we will lose her again. She hs a biological  brother and sister, grandma and cousins who love her dearly and get to see her often. Her knowing her biological family was one of the driving forces behind our fight. She is also blessed with a new family who loved her from the moment she came through the door. We have been blessed with so much love from family and friends - we have never felt more loved by those who have supported us through this journey.

So after only a few days with this new sweet baby I am exhausted. I am re learning all the things I used to know and loving the fact that my older kids can do more than they used to. It has been so fun to watch them hold her, feed her and talk to her. I am enjoying things I never had time to enjoy when they were small and life was chaotic. I pray that my body will be able to do this thing that I felt needed to be done and that no one in her kindergarten class will ever say, "Why is your grandma always here?"

My Therapy

Last week I had some appointments at the U - a little more intense than usual. The doctor who is running my clinical trial happens to be a genius who makes me nervous due to the fact that he will soon be replacing a vital organ from my open chest cavity. Its always weird for me to talk to him about my poop, my weight, and my unwillingness to schedule my overdue colonoscopy. Dr. Genius never laughs at my jokes, which irritates me . I always wonder how you become successful in life without being funny, but I find that very few people at hospitals are funny. I have favorites though. For example, the EKG guy is nerdy hipster who's hair reminds me of Sideshow Bob. I bet he is funny, but I will never really know.  I made it through the dreaded liver biopsy administered by a Doogie Howser aged doctor, who told me he likes to leave before the patients start to feel the pain that follows the procedure, so I guess that was kind of humorous. We got to rest for a day and then headed back to Huntsman for my MRCP which can only be described as the simulation of being buried alive. Every time I go into the "tube" I think about the story line on Days of Our Lives where Carlie is buried alive in a coffin by her evil husband. At least she had a live TV stream in there.

By the time we came home on Friday I was exhausted. Mentally and physically drained. I tried to catch up on all the things that I missed, but failed, as usual. I woke up Saturday morning and was thrilled to be able to restart a new medication I have been begging my local doctor (who laughs at my jokes) to let me try. I won't mention it by name, but let's just call it "legal meth for really tired people." I must preface this by telling you that I am taking no less than 20 pills a day, so what's one more? The new medicine was amazing - I was able to stay awake throughout an entire day!! I have to tell you - I have literally been praying for this for a VERY long time. My fatigue has become such an annoying part of my life, it felt amazing to be able to make it through an entire day and to get things around here done. I made big plans for my new life. A fancy chicken dinner I was going to make from scratch, an organized pantry with different bins and baskets. A Masters Degree.

When things seem too good to be true, they probably are. After 2 weeks of cleaning and cooking and organizing, my body rebelled. I woke up to a neck full of hives, a giant left ear, and a clown nose. I checked the side effects of my new drug and cried when I saw it. All of my symptoms were a blaring red flag - medicine must be stopped immediately. UGH. I cried all day. Even though I had only felt good for a few weeks, those weeks were precious to me. They reminded me of what I had been missing for years. I cried more, and I'm not gonna lie - I'm crying right now. I struggle with the fairness of my situation - even as I see people in much more complicated and sad situations. I am selfish and petty because I just want to clean my kitchen and make it through a spin class without getting nauseous. I tell myself that I'm the worst because at least I have legs. True story.

I admit to being a weak person with many flaws. I like to tell everyone about them so that they know that I ALREADY KNOW.  No need to talk about me or my flaws. I have it under control people.

Its weird though. At the end of each day I lay in my bed and tell myself that I can't take one more thing on my pile. No more money troubles, or marriage troubles, or kid troubles, or leaking pipe troubles. When I push on the brakes of my van I pretend not to hear the squeaking, because I CAN'T PUT ANYTHING ELSE ON MY PILE. And then I wake up in the morning and I start over. I am invincible at 6am. I am a hot mess with one giant ear and a clown nose at 10 pm, but I guess if I'm still breathing then everything is as it should be.

Guilt.

Guilt is a terrible thing.

I've had mommy guilt, sibling guilt, daughter guilt, wife guilt, friend guilt.... I actually have guilt for not being fit since Erik is a ripped gym rat who happens to be a personal trainer. I am constantly explaining to people that I don't use the gym, even if they don't ask.
I've had them all.

The guilt that comes from being sick is a new one. I feel it a lot on the weekends, especially weekends like this. My kids were so happy to have a break from school, and I really needed a break from my 15 hour work week. We watched everybody flee the scene of this sleepy town for adventure, while we stayed home. I have never been one to travel anyway, but there was always the obligatory trip to Lagoon, or a weekend in St. George to break things up. I did not have a good week, and Erik is teaching a  Saturday class, so we have been stuck here on the weekends.  Insert guilty feelings here.

I noticed myself doing something terrible this weekend. I couldn't sleep, and kept waking up in the middle of the night with that feeling.  GUILT.  My husband is shouldering too much, he deserves something better. My kids aren't having much fun. My house is a mess, and no one is getting dinner. It is literally stealing my peace.

I think it's making me sicker. Is that possible?? I feel anxiety when I dwell on it, and my guilt gives me anxiety. What??? I want to learn how to let these overwhelming feelings of guilt go. If this was a self help blog, I could give great coping skills to myself, but alas, this is only a place for me to complain. I love what Elder  Bednar said about this.

Guilt is to the spirit,
What pain is to the body.

My goal for the week is to feel better. Body and spirit.
And maybe to hit that gym!!

8 is GREAT!!

Trying to get back to normalcy is hard.

 Even the smallest tasks seem mountainous to me lately.

I have no problem admitting to being a very spoiled person. Case in point: for the last 4 years I have had a wonderful lady (Nancy) washing and IRONING all of my clothes. A few months ago she had a medical emergency and was hospitalized for QUITE a while. In the meantime, we had to close our laundromat. BOO.

Fast forward through our stress filled summer - full of CHANGE and ADJUSTMENT.

I decided that getting out of the house had to happen for me. I kept getting to the end of my day realizing that I had not been outside. AT ALL.

I applied for a job and laughed my way out of the interview, realizing that I could not have been less qualified. I pouted for a while, but tried again. I got the next job, but was faced with the terrifying truth - I DON'T KNOW WHAT I AM DOING. I'm ok with it.

I am working 3 hours a day and it is KILLING me. How do women do this?? Admittedly, I am only functioning at about 50% of my normal self, but I'm only working 50% of a regular work day, so shouldn't this balance? I have now decided that I proved to myself that I CAN wear khakis. I am fulfilled.

But I miss Nancy, and I miss clean laundry.

Now after listening to this spoiled girl whine about her very difficult life, I must share my weekend photos. Claire was baptized on Saturday with her cousin, Sophie. What an awesome day!! We had the church all to ourselves, and were surrounded by our amazing friends & family. Take it all in ...

Clinical Drug Trial Update

So many people have asked about my drug trial over the last few weeks. Since you are practically BEGGING me to share, I will.

There have been quite a few drugs trials for PSC over the years - none have showed any success. It seems like researchers have been scrambling to find ANYTHING that might help those of us who suffer from it. It is frustrating to have a disease that literally has NO cure, other than a transplant of a major organ. Even if the liver transplant is successful, there is a chance that PSC can return and ruin the new liver as well. In the meantime, the side effects can be so debilitating, and the risk for liver cancer and other problems are pretty high. 

I have struggled this year most of all. Once the craziness of my diagnosis came, the part where I had to accept it and LIVE with it hit me even harder. I have struggled with some pretty severe depression and anxiety this year. I remember so vividly a trip we took to Bear Lake last year. I was struggling more than usual, feeling like death was imminent. Erik and I were walking along the shore, and stopped and looked out over the beautiful lake and began to cry. I had an overwhelming feeling of despair wash over me. I told Erik this might be the last time I would see this place… one of my favorite places in the world. I worried that the time I had with my children would be short and that I had wasted so much time. So dramatic, I know. Erik held me, and said, "You're right. This might be the last time. You might not be able to beat this, and you ARE going to die." This is not what I expected, and it was hard to swallow. After more conversation, I understood.  He was not being harsh or negative, but giving me a reality check. My life was going to be different. When I think of this story, I laugh a little. Erik has never been one to sugar coat the truth - and when you are on the receiving end, it can be brutal. We went on to have a great conversation about eternal families and not wasting anymore time on unimportant things, so he redeemed himself.

Even though Depression and Anxiety did not leave me after that experience, we made the same trip to Bear Lake this year. I got to stand in the same spot, look out over the lake and feel hopeful. Yes, I was fatter from the 2 years I had layed in my bed feeling angry and frustrated, but I had  HOPE.

Getting on this drug trial was a total fluke. While I was at one of my regular appointments at the University of Utah, my doctor saw the trial coordinator in the hall when she stepped out. She came back in and said, "I just had an idea. I think you might qualify for a study that is enrolling right now." It was the final week of enrollment, and the criteria was pretty specific. They were having a little trouble finding people who met all the requirements since PSC effects so few people. The coordinator was skeptical that I would qualify, but we started the process anyway.

After 2 months of testing and being drained of what felt like most of my blood, I qualified and was able to start the drug last week. I went to my appointment alone, trying to be strong and independent. Yes, I constantly make terrible choices. I sat in the office and cried every time the coordinator left the room. As soon as I heard footsteps coming towards the door I would pull myself together and continue. I had to show them that I could give myself a shot in the stomach that would be required each week, so I tried to act cool. I almost passed out, but got through it. As soon as I got to my car I cried for an hour. 

I'm sure I have lost most of you by now… 

This study is double blind, so I am getting no hints from he doctors. I may be getting the full dose, a half dose, or a placebo. I will give my self a shot each week for the next 2 years, being tested and monitored along the way. The trial drug is not a cure for PSC, but has shown signs of slowing the disease and possibly reversing the scarring that occurs on the bile ducts, enabling the bile to flow freely. As of today, I have not had any side effects, which is common. My doctor called it "the most promising thing we have ever seen for PSC," and she has NEVER had a positive thing to say about any of the drugs I am currently taking. My liver tests have been stable for almost a year, and I have not had a hospital emergency visit since last Thanksgiving. I feel so blessed to have such a great medical facility close by. People with PSC are moving the the Intermountain West for great doctors and a better chance at a transplant. 

Trials are interesting things. I spent a long time being really angry and sad. I gained some serious weight, and my bed is permanently indented with my body in the fetal position, but I have gained empathy and gratefulness.

 I have watched a friend discover, and gracefully deal with her 10 year old daughters' diabetes. 

I have watched people in my life lose everything they own in a flood, and say, " I am so thankful for my community."

I have watched my husband is suffer too… He has kept the family going, knowing that his life won't be fair either.

I can honestly say I finally get this quote from President Eyring:  The test a loving God has set before us is not to see if we can endure difficulty. It is to see if we can endure it well. 

I want to endure it well.

I really do want to be a blogger. Like a real blogger. I lay in bed at night and think of all the things I could share, and all the clever things I could say. But then my day begins and I find myself struggling to make it to bedtime. I will forever be known as a condensed blogger - or maybe a nutshell blogger.

Josh asked me today, "What does in a nutshell mean?" Well, Josh - here is a good example of putting all in a nutshell.

When I last left you, Claire had just turned 7 . . .

Halloween was kinda boring this year. I should have appreciated the cuteness of all 3 kids getting dressed up to trick or treat with Erik while I manned the front door. Now Josh is too cool, and the other two don't think its fun to trick or treat with dad. In the meantime, I was too tired to keep answering the door. Blegh.

Then came something we look forward to for two solid years in between trips. Hawaii. . . My love.

The night before our flight left, I started to get sick. I knew it and tried to fight it as long as I could, knowing it would ruin the trip if I ended up in the hospital. I ended up in the ER anyway, and cried all night knowing I would miss the flight. It was the most stressful hospital stay so far. I also have to say, anyone looking forward to ObamaCare is in for a surprise. The bureaucracy we endured with this hospital was ridiculous and endless. I can't wait to see how smoothly things go when the government becomes involved. I digress. . . 

My family was so brave - they took my kids to Hawaii without us, and the children were THRILLED. They had 2 whole days without mom telling them to stay away from the waves and to stop eating candy bars. 

I had to spend the night in the hospital and we were cleared for travel 2 days late . . . HELLO QUIET PLANE RIDE!!! I felt so good the rest of the trip and we were able to enjoy some R&R - and the best pie I've ever had.

We had to make it to at least one LOST site!! (Sawyer & Kate anyone?)

My two favorite boys.

PCC

Had to hit the disney breakfast buffet.  Worth it.

Great Beaches

Somehow we managed to get all the grand kids together.

Came home to FREEZING temperatures and started the countdown for next time.

So, Josh is in Jr. High which is so crazy. He wants funny haircuts, and certain shoes and LOVES band.

It makes me laugh because he is me. I loved Jr. High band, and I loved playing the saxophone. See if you can find him in this picture . . . 

I can't believe Ali will be here next year.

I'm old . . . My dad is older. I had to share this picture because there aren't many out there!

And then there was Christmas. I already forgot what everyone got, I just remember that it was quiet and low key.  I choose to forget the parts that weren't so good!

This is the first year we haven't had a Christmas card, but I was too tired to care.

Too many bad days in December.

 

One of the sweetest moments was Claire and Grandma singing together on Christmas Eve.

And who can forget fondu New Years Eve??


And now skipping ahead to this. . . Dance season has begun and I can't stand the cuteness!!!

Oh my.

THAT WAS A PRETTY BIG NUTSHELL!!!

In closing, I would like to give a speech about this man. Being my caregiver is not easy. Being on call 24/7 for all my "special needs" SUCKS. I have had a lot of time to think this past year, and I have written about it before, but I will continue to spread the word.  I have made some bad choices in my life, but I made one really good one. I have no idea why he chose to stick with me, but I like to believe that Heavenly Father knew that I would need him. Now, that's not great for Erik, but it worked out really well for me. I have never known anyone as attentive and loving as this guy. He is not perfect by any means, and we have our unique issues, but I am lucky and HAPPY.