Our Day-to-Day...is pretty awesome.

When I let my mind wander to the coming months in our lives, I get scared.  I get worried. I get quickly, and easily overwhelmed. I mean, a liver transplant is a pretty big deal. 

One thing that I have learned though during this adventure is to take it one day at a time. And our day-to-day is pretty awesome. And by "awesome", I mean pretty normal. Besides an extra medication or two, and her eating and sleeping habits, Dru is your typical 6 month old baby. 

She sleeps, she poops, she eats (not a lot, but often), she's getting teeth, and she's trying to roll if that Buddha belly will let her. 

My day is probably like most moms (although Bill is better than the average husband). I've usually gotten up 2-3 times in the night to feed the baby. Bill gets up at 6:15ish to get Trey ready for school so if Dru gets up about this time, he will feed her and let me sleep. I usually get up around 7 or 8, feed B and Dru breakfast. Then give Dru her morning medicine. And yes, we are sometimes still in our pj's til lunch. 

Dru will usually take a  pretty decent morning nap and that's when I workout. If I don't do it now, I will go to the gym when Bill gets home from work. 

Most days we just hang out at home unless we have dr appointments. And I still visit with friends and go on drink runs as needed. 

 When Trey gets home from school we either have baseball or housework, dinner, tubs, more medicine, then bedtime. 

We are delighting in the "normal" right now. And sometimes I do have to remind myself not to plan around the "what-if's". It's ok to think ahead to summer baseball trips, home improvements (or moving), 

Birthday parties, boating, fitness goals (this is my sanity), maybe an at-home job, Brevin going to kindergarten !!!!  blah, blah, blah...

I guess what I'm trying to say is that everyday is a blessing and we are trying not to take it for granted. We are prepared for what our future holds as best as we can be. We are just taking it all one day at a time, and grateful for it. 

6 months old!!!

Little Miss Magic turned 6 months old yesterday. We celebrated by getting her immunizations :P

Seriously though, this day was a personal milestone for me. It marks the day that Dru has been in our home the same amount of time as she was able to be with her birthmom. I love that Dru's first three months will always be a part of her story, but I would be lying if I said I didn't want to be the mom who knows more about her. Selfish I know, but it is what it is. 

Look at that beautiful belly. I hope someday soon she'll be sporting a beautiful, life-saving scar on that belly. And again, I'm showing my selfish side. I had secretly hoped I could be her living donor and share that beautiful scar with her.  I felt like somehow that bond would make me more her "real" mom. I know, I know--I AM HER MOM!! I know beyond a shadow of a doubt that Dru was meant to be a member of our family. 

The possibility of a living donor has been ruled out altogether. I have mixed feelings about this. 1) I'm relieved that someone does not have to put themselves through a hard surgery to save my girl. 2) I'm extremely sad that someone else's family has to lose a loved one (a baby) to save my girl. THAT is something I will probably struggle with my whole life. 

A Thankful Heart

Our fundraiser campaign ended last night. I am overwhelmed with gratitude for the love shown to my family. And it's not about the money. 

So many kind words and prayers offered. I am looking forward to the shirts being delivered. If you are on Facebook please tag me in any pictures of you wearing them. If you are on Instagram use the hashtag #ibelieveinmagic. I would love to have a collection of pictures to show Dru one day of all the people that loved and supported her through this adventure. 

THANK YOU FROM THE BOTTOM OF MY HEART!!!!

We had a clinic visit at Primary's today. It was the easiest visit so far. No fasting, no sedation. Only one vial of blood and a visit with the newest member of our family, Dr. Jensen. 

Her PELD score went up by one, so she is now a 17. The closer she gets to 40 the higher she is on the transplant list. 

She also gained one pound so no feeding tube yet. We are stubborn about not wanting it yet. I think Bill and I don't want her to look like a sick baby for as long as possible. 

The only bad news we got today was that the option of a living donor won't work for Dru. She has a clot in her liver that has made it necessary for her to only be able to receive a whole liver that's the right size. This means another baby has to die in order for mine to live. The reality of that really hurts. How do I ever repay a family for a gift like that?

One thing I do know is I am a donor and so is Bill. If you are not a donor, please consider it. You never know when you might be able to save a member of a stranger's family. 

I Almost Forgot

This weekend we had a chance to go to southern Utah to watch our 12 year old play in a baseball tournament. It's been our first little vacation since Dru joined our family. 

It was awesome. It was relaxing. I almost forgot that Dru is a sick baby. That was a blessing. 

Our baseball team is an extension of our family and all the boys were so cute with Dru. Some of them were seeing her for the first time. 

It was so nice to have a time where our only concern was who was winning and keeping the kids from getting sunburned. 

We all ended the weekend exhausted (in the best possible way). Looking forward to many more trips in our future. 

Degree of Difficulty

Some days are definitely harder than others. Some days are physically exhausting. Some days are emotionally draining. 

I absolutely HATE the days I have to hold Dru down to allow someone to draw her blood. So much blood from such a tiny body. 

And the days she has to fast for an ultrasound or echocardiogram are no bueno. She looks at me with those big brown eyes and all I can do is lie to her about everything being ok. Sometimes it's just not ok. But it will be. 

I thought that it would be easier when I was told she would be sedated for her MRI, but watching her go to sleep like that put me in tears. And when she woke up at the sound of our voices when it was over, I cried again. 

I also hate the days that all of my doubts creep in. Things like "how much harder is this gonna get?", "when will we get the call?", "who has to give up their life to give my daughter hers?", "will we find a liver?", "will it be in time?", "what if....?"  

But in the middle of these hard days we are still so blessed. 

A phone call from my mom to check on us and tell me that her dental office wants to wear "I believe in Magic" tshirts once a week in support. 

Texts from my dearest friends daily to see how we are.  

Random donations of money from strangers. 

My whole family willing to be tested as live donors. 

My 12-year olds entire baseball team willing to do the same. 

A letter and money from an elderly neighbor whose handwriting reminded me of my grandma Joe's and had me crying again. 

Words of encouragement on Facebook and Instagram. 

One message of a complete stranger offering his liver (I wish it were that easy). 

I could go on and on. 

And thank goodness here lately, Dru has been as close to normal as she's been in a while. Those are the moments I soak in and take as many mental pictures as I can. Those are the moments that will carry us through. She is amazingly strong and forgiving. 

Entrusted with a Gift, part 2

Yesterday's post was about the gifts given to us by God, and how we choose to use them. 

My friend, Kortni, has been blessed with the gift of a tender heart. I love that about her. She has got to be, hands down, one of the kindest people I know. I am honored to be her friend. 

Kortni was a large influence in our familiy's decision to adopt. She had invaluable perspective that helped me so much on my journey to bring Dru home. I can never properly thank her for that. 

She had been down the adoption path twice before I met her,  and being able to talk to an adoptive mom was priceless. And the fact that she and Dru bonded on sight can only make me love Kortni more. I wish I had a picture of them snuggling today. They can both use all the comfort they can get.  

She recently started an adoption adventure for the third time. Being the tender heart she is, Kortni poured everything into this baby girl from the beginning. That will always be a part of this little girl's story, Kortni. I know it. 

Unfortunately, this adventure did not have the happy ending we all hoped and prayed for. My heart breaks for my friend. But I am so inspired that her tender heart, though broken, is still her greatest gift. Love you, my friend. 

Read more about this amazing woman here loveisallyouneed.me

Entrusted with a Gift

I went to bible study this morning and the topic really hit home for me. 

We were discussing the parable of the talents. And I may get this horribly wrong, but this is what it meant to me:

Talents are things given to us by the Master--something he chooses to give us. To entrust us with. What we do with our talents is up to us. Remember this. 

Parallel to this story we are discussing our "labels" in life. Some we give ourselves and some are given (or entrusted) to us. For example, some of us are "blind", some of us have "diabetes", some of us are "widowed", some of us are "infertile", and some of us are "a mother to a sick child". 

Now we have a choice, just like in the parable, we can choose to hide our labels behind anger, resentment, or denial; OR we can invest in what we've been given and multiply it. 

I did not choose for my daughter to have a rare disease. But I do choose to learn from it and hopefully help others as well. I am extremely humbled to know that I have been entrusted with this sweet soul. And what a shame it would be for me to hide this gift from others. So I am shouting it out as best I know how that MY DAUGHTER IS A BLESSING!!!!! She has made our life better just by being. Of course her being sick is hard, but I refuse to call it a trial. 

We have seen and felt blessings in many ways so far. And it is not hard to see that God's hand has led us all to exactly where we should be. We have grown closer as a family and have drawn closer to God through prayer and by putting all our trust in Him. 

My hope now, as we continue on this adventure, is that people will recognize our positive attitudes and strength and see that our "labels" do not define us, but what we choose to do with them does.