Eli

Deep breath.

That boy.

Lately there have been so many good things surrounding him and the tween he's becoming: he volunteered to participate in shaving his head for St. Baldrick's, for his Target project he chose exclusion of special needs as something to research, he wanted to teach his class about World Down Syndrome Day. And there have been shining moments of maturity with Maddux (which is a rarity for him): recently they started watching a movie together that was a little too intense for her and he seemed to be trying to turn it off and help her calm down. And with Ruby, he is always so helpful, but recently it's obvious that he doesn't have any fear of social embarrassment about things if she's involved. We just attended an event for Songs for Kids and Eli was rushing onto the dance floor to dance with Ruby without a thought to who was watching.

These are all great great GREAT moments in our lives. They are the awesome glimpses into what is so great about Eli.

But we are struggling in some areas that cannot be ignored. He is overly, over-the-top concerned if someone (mainly Maddux) is not following rules or isn't receiving consequences. I know it's typical for siblings to try to get each other in trouble, but it seriously ruins his day sometimes if he knows she's not being held as accountable as he thinks she should. This carries over into his work ethic: he will not lift a finger unless he sees someone else lift two, or at least when it comes to work benefiting someone besides himself. It is nearly impossible to get Eli to complete his responsibilities around the house, without nagging, unless that specific day it is tied to something he cares about.

And Eli's standard for others is WAY higher than his measuring stick for himself. Eli has an utter inability to take responsibility for anything he's done wrong. Add to that his lack of remorse over this actions that result in something negative... Recently he left Lehr's new glove at a baseball practice. When we realized it the next day and asked him where the glove was, he copped an attitude and seemed offended that we would be less than thrilled when discovering the glove was (hopefully still) at the field. The same thing goes when he is allowed to play at a friend's house and comes home 5 or 10 minutes late: he is mad at us that we started dinner without him or that he receives a consequence for his tardy return.

These may sound like small potatoes, or typical behaviors for a 10-year old, but when they rear their ugly head, it tends to take over our house, and the intensity of Eli's anger is loud and all encompassing. We are trying everything under the sun and hitting our heads against the wall, all at the same time.

My days are spent vacillating back and forth between Galatians 6:9 and Einstein: do I stay the course and bank on the brief moments of awesomeness, or is this insanity.

The Rest

This is not to say that the gifts that I haven't blogged about individually are not 'special gifts'....there are just too many to count. The kindness and generosity shown to our family during the last seven months blows me away every time I think about it. So while these each don't get their own post, please know that it was all of 'the rest' that made the biggest impact for us. It's how we got through.

I think I've listed the many things done for us before, but here we go again:

• before we started the first stay, a few neighbors cleaned our house and did all of our laundry
• a meal calendar was set up and we received meals each week while we had long hospital stays (the meals were awesome, but someone else managing the set up was HUGE)
• we were asked to keep a cooler on our front porch and in it we received 'random' drops of fruit or other foods
• cards, cards, cards
• gift cards for dinner places
• bowling GC's for when Ruby is better
• offers to take the big kids out for a movie, or overnight
• emails, emails, emails
• childcare for my big kids after school on days I was at the hospital (again, a friend did this for me for the first stay, and the set up of this by someone else was amazing!)
• meals brought to me in the hospital
• muffins/snacks dropped off at the hospital for me (food for the hospital was HUGE!)
• texts, texts, texts
• GC's for fro-yo for the big kids
• good friends that picked up my kids when they got sick at school and I was in the hospital
• new pjs for me and ruby for the hospital
• prayers, prayers, prayers
• 'random' gifts in the mailbox or front porch for Ruby or the big kids
• a basket with small distractions for the hospital (yarn for my knitting, new books for Ruby, etc.)

Please know that this is not intended to be braggadocios. While we do have the best friends, neighbors and community ever, my intention with this post is to help others who want to help others. I cringe at the amount of times I can remember a neighbor going through a rough time and I found the excuse of young kids or no free time getting in the way of my helping them. This journey with Ruby has opened my eyes to all of the ways that people can help, and how much an impact even the *little* things can have.

I've read before that "How can I help?" is not a great question for someone in a position like we just went through and now I get it...it's hard to ask for help sometimes. There are some things that you can just do without asking, and others that you can do with minimal asks (ex. "I'm bringing you dinner...would you like it fresh to eat tonight, or something you can freeze for later?")

The Medal

Yet another one. Another one of the many special gifts Ruby has received from what I can only describe as her adoring fans. Just before Christmas we received a small gift bag in our mailbox. Inside contained a race medal and a very special letter to Ruby. 

Years ago, when Eli was a wee lad, he was on a baseball team with a mom who I've kept loose contact with since. Most recently we chatted about the preschool Ruby is at because her kids went there too (which I knew before we made our final decision). She's a runner who is always raising money for cancer research. She's dedicated miles and runs to Ruby in the past, as she does for many people fighting cancer. This time, she outdid herself.

Carri ran the Galloway half-marathon for Ruby this year. Here is part of her letter:

"...There were several moments when I wanted to stop...But I didn't stop. Every time my legs felt weak or my breathing was too heavy, I thought of you. On Sunday (the day of the race), you were finishing up your chemotherapy...Running a half-marathon is easy compared to being in the hospital, attached to tubes and wires for days at a time. The pain in my muscles is nothing compared to not feeling well, losing hair and being stuck inside a hospital room when you want to be...home with your family...I want you to have this medal...even though you still have miles and months to go, you are the real winner, the hero...You are fighting for the finish line every day. You inspire me to live life to the fullest every time I see a picture with your BIG, BEAUTIFUL smile...I look forward to seeing the pictures of you dressed up in costume, napping, eating lunch and doing all of the things that kids your age should be doing...I hope that you will wear wear this medal and be reminded of how strong you are and how much you are loved."

Such a cool reminder that there are so many times in life that we have the opportunity to inspire others. I always used to tell my (boot) campers: you never know who will inspire you and you never know you you will inspire. So true, especially with Ruby. She looks to other kids all of the time and tries to imitate their movements or their words, inspired by their abilities. All the while, she is unaware that all around her are people who know her story and draw strength from her.

The Gift of Hospital Stays

 Joshua 24:15 "...as for me and my household, we will serve the Lord.”

At the end of each calendar year, I put all of my blog posts into a book to keep. It's my way of keeping 'baby books' of my kids. I just finished 2015, which means I had to go through all of the blogs again to do spell checks and formatting and whatnot. I noticed a significant increase in my blogs in the fall. And the blogs were more insightful to what I was feeling about the kids (mostly Ruby). I also noticed that the blogs all but stopped when she was home from the hospital.

It doesn't take a genius to make the connection: I obviously took more time to intentionally pray for my kids, love on my kids, be present with my kids, while we were going through the harder times. I took more time to plan small fun things with them. I spent more time in the Word each night. I spent more time reflecting on how great my family is. While Ruby was in the hospital, whether I was home or with her, I prayed constantly for us to be together again. I prayed daily in gratitude for our family. I prayed on verses I'd never read before.

What a gift.

That doesn't mean those times were perfect and the stuff Hallmark cards are made of. The kids still argued, I still lost my temper, moments were still wasted. But most of the time I felt like i was gaining on things. Even when things weren't great with the big kids, we were working through them instead of just moving past them.

It would be easy to say that I had more time to spend in prayer and in thought, but actually I didn't. The only down time I had while in the hospital was after Ruby went to bed at night, and sometimes that was late due to meds or nurse visits. And when I was home on the weekends, the kids and I were running all over the place. I think instead I just made more time. Time that I don't often make in everyday life.

So what does that mean? For me it seems to be the age old story of not appreciating things until they're gone. When my time with the kids was limited, I craved it. When our family time was non-existent, we did more things together when we finally were together again. When Ruby was hooked up to those lines, I capitalized on ever second she was unhooked.

I've decided to try and really learn from this (not just return to 'business as usual'). Here's my goal going forward: to spend each day as if we just left or are about to go into the hospital. My fear is that I'll fall back into the space where days pass by without me being intentional. Without me being grateful. Without me being present. Without me spending time with God.

So while this blog is about the kids, I will definitely continue to use it in a cathartic way to work through what God places before me.

Brave The Shave

The cool stuff keeps happening...

A few weeks ago I received a message from someone asking if we would mind if their son shaved his head in honor of Ruby. He has a teacher (who we know from church) who shared Ruby's story and a few videos with the class. Since his older brother had been shaving his head in in the name of kids going through cancer treatments for the last few years, he wanted to join in the great cause. She hadn't even lost all of her hair at this time, but of course we agreed. Now Ruby is an official honor kid of St. Baldrick's.

Then I started reading more and asking more about this foundation. St. Baldrick's is one of a few awesome organizations that is working hard to bring about change for the future of childhood cancer. They work with pediatric oncologists to determine the most promising research to fund. Then they create cool events to raise funding so that they can make the greatest impact for children with cancer. The grants that have come out of St. Baldrick's cover a wide range of childhood cancer, and are providing more insight and information about treatment daily.

One such event they host is "Brave The Shave":

"St. Baldrick’s head-shaving events began as a challenge between businessmen and have grown from one event in 2000 to over 1,300 events in 2013, raising critical funds for childhood cancer research. Events take place in pubs, restaurants, schools, churches, parks, malls, military bases, firehouses and any other place you can imagine."

My understanding is that this young boy, along with his brother and anyone else who signs up, will get their heads shaved to raise donations. You can sign up ahead of time, show up and get shaved, send in donation dollars, volunteer...so many options. Our family is planning to attend; we can't wait to participate in the excitement.

So if you'd like to come out and get your head shaved in her honor, or come out and watch others get bald for brave kids, or just donate to the awesome cause, click here. (This event is in Vinings, GA, March 6, 2016, 1-5PM. If you sign up, you can even join 'Team Ruby' on there.) We'd love to see you all out there (maybe wearing a Team Ruby shirt?), cheering on the brave kids battling cancer and the amazing people shaving in solidarity.

No Dance For You

For the last several years, Maddux and Lehr have attended a father-daughter dance, either at a local church or at Maddux's school. This year they opted for one at a church because the school one was held the weekend of the Sib Camp.

As luck would have it, the week before the dance, Maddux got invited to a good friend's birthday sleepover on the same night. At first we thought we could swing both, leaving the dance a little early, but after rechecking the times of the dance, we realized it would have to be one or the other.

Of course, Maddux was in tears, unable to choose between two things she wanted to do so badly. In the end, she chose the party, but she seemed most upset that her choice meant Lehr would miss out on the dance.

To take the place of a fancy Maddux-Daddy date, the two got dressed up tonight and went out for dinner and a movie. Maddux took a shower and let me blow dry her hair and apply a little make-up. She promised to let Lehr open the door for her and not run or sit on the floor in her dress.

Last Day

Psalm 71: 23  My lips will shout for joy when I sing praises to You; And my soul, which You have redeemed.

Ruby is OUT! She finished her last 24-hour bag of chemo this afternoon, getting her discharged from her LAST round of chemo! While it's only been six rounds (just over six months), they have been intense rounds requiring a lot of inpatient time. Praise God...no more chemo!

Ruby's rounds always start with chemo and end when her counts recover though, so this is the beginning of the last round for her. We got to go home tonight, but now we wait for her counts to drop (and possibly need blood or platelet transfusion(s), and/or antibiotics for a fever while she's neutropenic). All of that before her white blood cells and red blood cells and platelets recover to a level that puts her back in a healthy place; this whole process typically takes a month.

Once Ruby's counts do come back up, we will go back for a check-up and full CBC. A green light there means the removal of her central line will be scheduled. That is a *simple* outpatient surgery, after which she heals and can then take baths and go swimming. Can I get an "Amen"?!?!

Back to Ruby's last day. Before lunch, I packed all of our stuff up and ran 90% down to the car while a nurse occupied Ruby. (I didn't have to twist any arms.) Ruby took her afternoon nap while the chemo finished, and we prepared for discharge. Ruby's nurse mentioned that there was a ceremonial bell in the lounge that Ruby could ring, signifying the end of her treatment...would we be interested in doing that? Of course! So she went to get the final paperwork for us to leave and returned with most of the nurses on the unit at that time. They were all clapping and cheering; Ruby joined in, but kept looking at me as if to ask, 'why are we clapping?'. They had a sign that had been hanging in the hall all day with notes to Ruby. We all walked down the hall to the lounge together so Ruby could ring the bell. My camera was already in the car, but I still had my phone to take a quick video and picture. She rang a few times, smiling after each 'ding'. Once we were done with that, we walked down the hall to leave, the nurses clapping behind us. Ruby was so hyped up and determined in her walk; it was almost like she got it. I stopped her after a few yards and asked her if she was going to hug anyone. She grinned HUGE and turned around to return to the nurses. She gave them each a huge hug and then we left.

It is very likely we will have a few more nights in Hotel Aflac (for a fever while her numbers are bottomed out), but every thing along the way deserves a celebration!

The Badge

If you know Ruby, you know she makes friends everywhere she goes. She walks through Publix, school, the hospital, LIFE, waving to people and saying either "hi" or "bye-bye". She stops at every open door, she tries to meet people's eyes, she smiles with her whole face: she just sucks you in.

Since we've been living part-time (half-time?) at the hospital for the last six months, Ruby has made a lot of friends here: doctors, techs, nurses, security, administration....she doesn't discriminate. But someone sure to always get more than a wave from Ruby is Morris.

When Ruby first started living at CHOA, we would cover as much of the hospital as we could each day...anything to not be stuck in the room if she wasn't hooked up. We would see Morris in the halls here and there and he would always engage Ruby, usually with a duck sound. Hook, line, and sinker. (Ruby is a sucker for realistic animal noises.) That turned into the two of them quacking at each other in the halls or on the Aflac Unit daily, if not more often. This last round, they had the nurses' station laughing out loud at their antics over the weekend, and Ruby started dancing her feet like Morris too.

So to switch gears, Ruby also loves the badges everyone wears. When a nurse or doctor comes in and checks Ruby, she always, ALWAYS, grabs for their badge, phone, and stethoscope (usually in that order). Some of the nurses and I joke that she likes to check every one's credentials before she lets them examine her. And just this week as Ruby and I were making our rounds on the unit (which includes slipping out the back door and utilizing the loooong hallway separating Aflac from the rest of the hospital), Ruby showed me that she knows the badges have power. We approached the door to re-enter Aflac and she moved close to the wall and lifted the front of her shirt towards the scanner. (The door can be automatically opened with a badge; otherwise you have to push it open, which we have to do.)

Back to Morris: one of our favorite nurses mentioned to him that he needed to make Ruby a badge because she checks every one's. Add that little story about her and the door and voila - tonight he presented her with her very own badge.

Oh how I wish I could have videoed the ten minutes after she received it. (Unfortunately Ruby is hooked up to chemo and it is all I can do when we are in the halls to keep pushing the chemo pole at the speed at which she takes the corners...no chance I could hold a camera during that.) This girl was SO excited. She kept looking at it and saying "OO-BEEE" (Ruby). In fact, she stumbled a few times because she was not watching at all where she was going and kept staring at the badge. Then she started running through the halls, yelling to everyone she saw, "OO-BEEE!", as she held out her badge or pointed to it. And when we passed something on the wall that resembled a scanner? You better believe this girl paused and told the scanner "OO-BEEE" as she tried to scan her badge.

Seriously, such a fun night...this girl wore herself out with that badge, up and down the halls. These are the details that make this journey memorable in a good way.

Plans

When I get mad, thinking about this fall (and winter!) and all of the moments that leukemia stole from us, I have to remind myself that leukemia also gave us a lot of moments. It's far too easy to overlook those gems in the face of all of the memories you planned to have. But the forced pause, the non-negotiable shift of focus opens the door for things that can't be planned. Things that wouldn't be noticed or experienced were it not for the new set of eyes gifted to you by something like leukemia.

Ruby
This fall was to give her a 'breakout role'. She was supposed to go to school two time each week and, pardon me, kick @$$. She just was. And I was going to enroll her in swimming and gymnastics to work on PT things. I had it all planned out...

Instead, we got to see the amazing heart of a school that had only just met us. We got to receive love from them in ways we never could have expected, and Ruby still did flourish this year, even though she was only there 1/4 of the time, at best.

Instead, Ruby and I got to spend a lot, a LOT of time, one-on-one. That is true for most of our days, but this was hospital time, without me being distracted by piles of laundry or making dinner or photo edits or the other kids. That made my girl and me able to communicate without words even more than we were able to before.

Instead, Ruby got more speech therapy with Mommy than she could have ever hoped for. Being hooked up to chemo or fluids or both makes many PT things hard to do, and my skills in OT are limited. So I started up yet another speech program with her while we were hanging out at the hospital, and a friend made us more flash cards, and every day afforded us at least two (if not more!) dedicated 30-60 minute windows to work on speech.

Maddux
This was going to be the fall that I slowed down and focused on Maddie to see what she's passionate about. I was (am!) determined to find something that she really wants to do and help her in that area. This was going to require some good one-on-one, and it was going to require me to stop being 'mom' and just listen to my girl.

Instead she didn't do any team sports or music this fall. Instead she did *just* a laid-back art class after school one day a week. Instead she continued to flourish in the area of making things for people that she loves. Instead I got to see her heart shine through in every project she creates. Instead, I got to find more notes and drawings left for me every time I came home, whether it was from the hospital or from the store.

Instead I jumped at every chance I could to read to Maddux before bed when I was home from the hospital. Instead of defaulting to Lehr for that, since he typically gets less time with them, I started book after book with her, trying to soak up precious minutes of just Maddux and I together. (But I still never found that one thing for her.)

Eli
Oh, the fifth grade year. Many potential moments for this fall. I planned to grab this boy once every two or three weeks before school and grab breakfast, just the two of us. I planned to become more involved in the older kid group at church (to be with him). I planned to spend the fall completely immersed in all things Middle School to not only figure out where to send him, but how to properly prepare all of us for that.

Instead I got many before bed chats with Eli. Just as I did with Maddux, I stole moments with Eli, reading new books together and doing some devotionals. We even read through another one of those books that helps you talk about that, one that went beyond the preliminary stuff. One that is probably more on par, unfortunately, with what he's about to be exposed to through his peers, if he hasn't been already.

Instead, Eli is involved in an amazing 5th grade group at church where he's without any of his family. It's a place he gets to go for an hour on Sunday and hang out with a few cool adults and other kids his age, about to make the same jump into tween-hood.

Instead, I had to 'let go and let God' with so much of the Middle School decision. Our focus had to be narrowed and we had to sharpen our senses to take in more in smaller chunks, as that's all time afforded us. Instead, I had to sit back and notice the maturity that I'm seeing emerge from Eli.

So thankful that my plans don't usually line up with His plans!

Sib Camp

Eli and Maddux attended a 36-hour camp this weekend. Camp Sunshine is a great resource for families going through childhood cancer. There are events throughout the year, family camps, and sibling camps. We hope to attend a family camp next fall, since Ruby was unable to attend this year during her treatment. A few weeks ago, Maddux and Eli were signed up to go away for two nights during the sibling camp. This camp is only for siblings (age 7-18) of kids with cancer. The focus is totally on the siblings...giving them time and attention and something fun that is just about them (and not about the hospital or sickness).

I dropped the kids off at the the Camp Sunshine house on Friday night. They rode a charter bus about an hour away to the campsite with other kids from the metro area. Once they arrived (per both Maddux and Eli), the fun started and didn't stop until I picked them up first thing this morning.

Maddux said she and the other six girls in her cabin stayed up late giggling. Perfect. She loved her counselors and she thought it was so cool that she got to pick her activities without any restrictions. She mostly did arts & crafts and fishing, but she dabbled in magic and archery as well. When I picked her up she gave at least two other girls hugs, and waved good-bye to everyone she saw.

Eli said his cabin was allowed to stay up until 11:45 the first night. He opted to play in the gym that whole time: basketball and dodge ball. For his activities, he picked sports, magic and drums. While he had a great time, I didn't see any hugs from him, and I doubt Eli stayed up late giggling. He is super excited about the magic though, and has shown me magic tricks constantly since he got home.

Hero

Eli had to write a hero essay in school. Last year he chose his grandpa, my dad, and wrote a very cool essay about him. This year he chose me, and didn't tell me until it was done. It was a good day.

My Hero  By: Eli Eliason

    Go Mom! Dad, I am deeply sorry, but Mom is the best! She feeds me so I don’t go hungry, she helps me with my homework and she plays outside with me when I ask her to, but only if it is warm and sunny. If you ever could imagine someone who had awesome grades, was a grade school teacher, and has to take care of three crazy children -  that superhero of a person is my mom!

    Since I was a baby my mom has shown 100% dedication to me, Maddux (my sister), and Ruby (my younger sister). She has always, no matter what, responded to our everyday distress calls and hoots of enjoyable laughter. Even if she is in the middle of making dinner, she will always take time to get up and help us with whatever we need help.

    In my opinion, my mom is #1 at leadership. She may not be a manager of a football team or be the head coach of a baseball team but she can lead a family just as well as the best dad in the world! Whenever we go on a road trip she is always prepared with diapers (Yes!), wipes, food, and entertainment for the big long trip awaiting us.

    Also, my mom cares a whole lot about me. Whenever I think of her caring, I think of the saying ”Unless someone like you cares a whole awful lot nothing’s  going to get better, it’s not.” (Dr. Seuss) She probably doesn’t care if I am 1,000,000 miles away,  she still loves me no matter what, even if I am sad, happy, angry, full of fear, or surprised. She cares for me more than a chocolate Oreo ice cream full of hot fudge with whipped cream and a cherry on top!

     All I am trying say is my mom is the nicest and the gentlest person you’ll ever meet! She is a small person with a HUGE personality and lots of leadership, dedication, and caring. She will help you out whether you are one or twenty. If you are looking for someone to help you out, my mom can do it all!

Updates

Rounds are done, Ruby and I are walking the halls again. She still prefers to push the pole rather than just catch a ride, but now she has a new trick: she pushes at full speed and then does a hop-hop with her feet to jump on and catch a ride. Someone get this girl a skateboard...

Ruby's tolerating the chemo (same exact protocol as Round 5) as well as she ever has: no nausea, no dips in energy, nothing but the picture of health. The doctors expect that her counts may take a little longer to come up this time, as later rounds have the cumulative effect issue, but they expected a lot of things (negative) from Ruby so far that haven't come to fruition, so we'll see.

Once her counts recover (end of Feb/start of March), they will schedule a port removal. We wait until then because she will likely need blood products and/or antibiotics through the port during count recover, so they like to leave it in until that is finished. After that, she will have a CBC (the blood test that triggered her diagnosis) once a month for several months before they gradually move to once every two months, six months, and then annually.

More Musings

Almost there....it's always the last mile that's the longest. The last month of pregnancy, the last hour of the drive, the last lap of the race.

The last round of chemo.

The chemo itself is only the start of the round...it's always been that way. The full 'round' includes what happens after the chemo: the count recovery, potential fevers, low counts, transfusions, etc. So that means we still have the remainder of February - maybe with an adder in March, in front of us. Not much in the grand scheme of things (we've been at this since August), but still, it's getting through this chemo stay that seems to be taking a while. We've got 3 days/2 nights done...only 5 days/5 nights left.

As always, I have to comment on how *easy* it all is for Ruby. We have no choice but to focus on the hard parts of being a family divided and days spent tearing our hair out trying to keep Ruby from coming separated from her chemo pole. So many parents would love to have the 'stress' of their child having the energy - too much energy - to run full speed away from something they are tethered to... But we quickly adapt to what we are in, and we get used to new normals (even as abnormal as they are), and we find room to complain about it all.

So, until next week, we are spending our days trying to float through the cacophony of the Aflac unit (monitor beeps, nurses in and out of every door 24/7, volunteers making their way through the halls with gifts and books and dogs, the medical team doing rounds, staff emptying trash and changing sheets and trading out sharps containers, and and and....) Trying to find the symphony in it rather than the racket. Good thing Ruby is leading the way because she sees nothing but joy, even in cancer.

Staring Down The Final Mile

Jeremiah 29:11  For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.

Proverbs 3:5  Trust in the Lord with all your heart, and do not lean on your own understanding.

Here we are, on the eve of getting admitted into the hospital for another eight days of continuous chemo. This drip is different because it is expected to be the last. Ruby has responded exactly is the doctors hoped throughout this process, so at this time there is no reason to expect any further chemo.

Praise God. Praise God. Praise God.

Even though I give all glory to God in this, I do struggle a bit with that. We have met so many families whose journeys have looks so different from ours, often in devastating ways. Many times when I think about how Ruby is being healed, or when I hear other people give God the glory for similar healings, I have to wonder what a double-edged sword that can feel like she someone that has not been healed. God is good, regardless of the outcome, but when we say, "praise God", or, "God is good", as a result of a good turnout, what does that insinuate about the outcome? That it was God's doing? If that is the case, what about when the outcome is not good? Is that still God's doing?

So then I get all lost in my thoughts and I think about what God gives us versus what the world gives us. Where do you draw that line? 

For me, I believe definitively that we are all born as we were meant to be born. I know that becomes very difficult when it applies to miscarriages and fatal diagnoses... In those instances I choose to believe that God put each baby on this earth in the way they were meant to serve. That means that a baby that was conceived to die had a different purpose then a baby born without immanent eternal rest. 

When applied in my own life, that means that I absolutely believe that Ruby was stitched together with three copies of her 21st chromosome by God's design. But I don't necessarily believe that He intended for her to have leukemia. Just like I don't believe that He intends for every other cancer patient to have received the diagnosis they did, or car crash victim to have gone through that crash. I know, without a doubt, that He will see us through everything the world throws at us, but I don't know that he laid out the plans for starvation and human trafficking and drive-by shootings. 

So where does that leave us? I don't know. I don't know that it makes a devastating diagnosis or catastrophic event any easier to deal with. The only thing that can make that in anyway tolerable is a certainty that we have someone there to help us go through what the world gives us. We have a Father desiring to walk us through the hard times and provide rest when we need it most. We have a Son who was willing to die to ensure our relationship with that Father. We have a Holy Spirit, there to help navigate every moment of our time on earth. And I am eternally grateful for that, because when I compare Ruby's leukemia journey with many others I have seen, I need something to hold onto. There is guilt associated with her remission, with her lack of complications, with her overall health through this process. And I need a way to work through that guilt. I need a reminder that we were not created for this life, but rather the afterlife, where children don't suffer and pass away.

The Dress

I could write a blog every day for the next year about the outpouring of love and prayers and gifts and cards that have been showered on Ruby and our whole family. Even now, six months later, we still receive things in her mailbox and on our front porch and in our inboxes that We never would've expected. Today I'm sharing about a special gift we received last fall.

Ruby's red dress. Oh how I love it. It is fancy, it is red, it is over-the-top, it is perfect. Since Ruby was a few weeks old, we have been going to Gigi's Playhouse pretty much every Thursday for group therapy. At least as much for me as for her. The families and therapists we have encountered there have become like family to us. One therapist in particular has four legs. Ouie, a therapy dog, started coming right around the time Ruby started walking. Of course Ruby gravitated to Ouie immediately. John, Ouie's dad, would help Ruby walk Ouie with a leash and always have special attention to Ruby. In addition, when Eli and/or Maddux would tagalong, John always entertained and chatted them up as well. 

When Jon found out about Ruby's diagnosis and long hospital stays, he offered immediately to meet the kids and I at the park and time so that Ruby, and Eli and Maddux, could play with Ouie.

When we attended the Buddy Walk this fall, Ruby was not with us, but her Team was there in full affect. To my pleasant surprise, Ouie and both mom and dad came as well. I love that they came out to support, even with Ruby not there. In addition, they brought along a very special gift. Ruby's red dress, a little black purse, and a bow for her hair.

This was such a great gift because it had nothing to do with Ruby being sick, but everything to do with Ruby being Ruby. In true form, when Ruby puts the dress and the headpiece on, she loves it and carries the purse around with pride.

We are so grateful to have met some amazing people who have been infected by Ruby's spirit.