Several years ago, we began to celebrate the Passover Seder as a little family. I have participated in several full length Seder meals and it is always a profound experience for me. I wanted to incorporate that experience into our family's Holy Week traditions and it has become my favorite part of the week.
Holy Week is a heavy week for me. Even Lent is often overshadowed by pain and heartache. Four friends of mine have buried their children during the Lent season - I've grieved with and for these precious mamas and their children. One year, our daughter was in her second spica (body) cast during Holy Week. Taking care of a baby in a spica is exhausting. The cast came off Good Friday that year and her skin was raw and tender for several days. Raw and tender seems a fitting description for Easter week. Last year, after 19 grueling days of pain and sleeplessness, one of our kids was diagnosed with Perthes Disease (a very painful bone disease.) That diagnosis came Easter week. We spent Good Friday in a pediatric hospital in Dallas. It was painful emotionally for us and physically for our child. We were raw and a year later, I'm not sure we've recovered. Here we are again, hours away from Good Friday and we will find ourselves remembering the cross and practicing silence and also finalizing a very difficult medical decision for our daughter in the morning. Meanwhile, I find myself carrying her often this week and searching for medicines as once again she is in pain and in a flareup of the disease. Holy Week has marked us. It seems to be clouded in pain for our family. We pause and perhaps the pain of disease forces us to pause more often - I find myself reflecting more on Jesus and remembering the events of Holy Week.
Part of why I so enjoy the Seder experience is the way it involves children. The children have specific roles in the meal and I love the emphasis on family, the value placed on women and children. It seems unique to me that an ancient culture would so clearly value women and children. I also enjoy preparing for it. Perhaps more than any other holiday event, I study for the Passover. I read guides and articles and books. I listen to the traditional music and research and write and plan. I love the parallels between the traditional rituals and the Resurrection. Mostly, I love the imagery and imagining Jesus at the Last Supper - listening to these same songs, saying these same words and knowing He too participated in the Seder - just before His arrest. I love the radical introduction of the Eucharist and the emphasis on love and service as demonstrated in the washing of His disciples' feet.
After studying the Passover Seder, so much more of the events of Easter make sense. When you understand the traditions a little, it makes sense for why the introduction of the Eucharist was radical. When I realized the meal involves 4 glasses of red wine and a 4+ hour meal, it makes sense that the disciples were sleepy in the middle of the night at the Garden of Gethsamane. Developing a better understanding for the significance and cultural context for the Last Supper has been very formative for my faith in recent years.
So for our little family, bedtime is also sacred. :) The actual Passover Seder meal would take approx 4-5 hours starting at sunset and ending around midnight. We start ours a bit earlier because hungry children and spend 1-2 hours. By combining the eating with the rituals, it does shorten it a bit.
Technically, a Messianic Passover Seder should occur on Maundy Thursday. We sometimes do ours on Good Friday depending on schedules and conflicts and the week. (We live in freedom so sometimes it has to happen on a different day.) I've done it without the meal or with a modified meal. I've done it with fish and this year we are doing it with lamb. It was a struggle for me to purchase the lamb. I don't eat much meat and was honestly rather disgusted by the bloodiness of it. Plus it was costly. But as I wavered and considered other options at the butcher, I felt a strong conviction to purchase the lamb this year and focus on the bloodiness and cost and involve my children more in the process of preparing it. I don't think lamb must be used - there are certainly other options but lamb is the traditional food.
As we prepared the lamb with marinade, Ellie commented "Mommy, I'm so sad this lamb had to die for us. It's so bloody." I realized then that it was the right decision to go with lamb this year. We needed to be confronted with the blood and imagery of the lamb. The phrase "Lamb of God" is far more powerful for our family tonight.
Other components of the Passover meal include:
Maror (bitter herbs- ground horseradish or romaine lettuce stems or even arugula)
Matzo (delicious crackers - my kids eat these year round. My grocery store no longer carries them but Amazon does and they arrived on my front porch yesterday.:))
Salt Water (just a small bowl)
hard boiled egg (shell on)
Lamb or fish (I roast the lamb. Marinade it overnight in lemon zest, olive oil, salt and pepper, lemon juice, dijon mustard, rosemary & honey)
Charoset (apple slices mixed with plain Greek yogurt, walnuts & raisins & a little wine/juice)
Bone of lamb (butcher always is surprised when I order this)
Small bowl for hand washing, extra napkins and large bowl and towel for foot washing
White towel (I use a flour sack kitchen towel)
Wine (red) &/or grape juice (We use both.) Each person will drink 4 glasses - so buy enough. You can use small servings.
I bought a Passover plate last year that I love (off Amazon) but I've also used a plain white dish for displaying the food components. We've sometimes placed it on the coffee table and reclined as is traditional. This year, we are using our kitchen table but incorporating pillows to remember the act of reclining.
Resources I've found helpful:
The Messianic Passover Seder Preparation Guide (a short booklet that clearly explains food items and table set up and includes a few simple recipes.)
Jennifer Dukes Lee - A Messianic Passover Seder for Families with Children
*I've also used Ann Voskamp's guide. I found Ann's a little over my kids' heads. Jennifer Dukes Lee's is very easy to follow and clearly written. I added a few things for our family that I didn't want to miss and created notecards using her guide as a basis. My notecards can easily sit at each person's seat to help easily guide us through the rituals without the distraction of flipping papers or losing our place in a lengthy guide. Also, writing out the notecards helps me to learn the format and key ideas of the meal. The traditional Seder includes singing and dancing so we also include dancing (my kids love a dance party and some of the Hebrew music definitely inspires dancing!)
A Bible. We will be using The Jesus Storybook Bible to read the story of the Last Supper with our kids.
Ann Voskamp - The Best Easter Dinner (How to Start a Christian Tradition Messianic Seder) -beautifully written guide
24 Hours That Changed the World by Adam Hamilton. We are studying this in our Sunday School class but I must admit I've read ahead this week. His research and insight have been fascinating to me this week as we prepare for Holy Week.
I absolutely loved Janet Denison's article about how to talk to kids about "Why did a good 'Dad' let them kill his Son?" She uses scripture and wisdom to wrestle with some tough questions that especially inquisitive kids may ask as you dive deeper into understanding the Passion. My favorite line? "The first thing every parent must teach a child is that God can be trusted, even though He is difficult to understand." Print this out and tuck it somewhere safe to reference during those hard conversations. (Good for adults too, actually.)
The Book of Common Prayer for Ordinary Radicals
Music - a Celebration of the Passover Seder (there's a MP3 file that you can play on the Amazon Music app)
Tomorrow, I hope to share the three most fascinating insights I've learned this year as I've prepared for our Passover Seder meal.
at 12:16 AM
Today was Will's first soccer game of the season. He's playing for a new team and a new organization this Fall - Upwards Soccer. I've heard of Upwards but I had never looked into it. For months, Will has been into soccer and practicing outside all the time. It's the thing many of the boys play at recess and he was so excited when our friends visiting from Uganda gave him some coaching in our backyard. But, I still didn't pursue getting him on a team.
Until, one afternoon in the middle of the summer when our friend and amazing carpenter Joseph came by. Will was sitting on the couch and Joseph - a young soccer coach and not Will's dad or Will's friend's dad or anyone with any obligation to Will, intentionally invited Will to try out for his soccer team. I stood in my kitchen (tears in my eyes) as I watched my son's chest swell with pride and his self confidence soar... a real soccer coach wanted him on his team! It was such a powerful testament to the potential power and influence of a coach on a kid's life. By inviting Will to play for him, he did something that neither I nor Reagan nor any of our friends can do. Joseph had no obligation to invite Will. He simply wanted our kiddo and with those words, he made a difference to a little boy. He believed in our son and our kid knew it.
So a few weeks later, Will and his Daddy went to tryouts and Will did great. Due to Will's age, he is actually not on Coach Joseph's team but we've been so impressed with his coach (Coach Larry) and his intentional coaching, teaching, and encouraging of each individual player.
Today, Will played his heart out - in his very old, broken down shoes (new ones ordered last spring still not in!!!) He also played with awful shin splints. Bless his heart - he is supposed to avoid running in these current awful shoes because they were reinforced at the hospital this week to buy us some more time before new ones are ready but we did have special permission for him to play his first game today. He spent several hours resting barefoot with his book this afternoon.
|Going for a GOOOOOOAL!|
He played his heart out - chasing that ball up and down the field and scored the first goal of the season!!!
He listened to his coaches and followed directions and drank enormous amounts of gatorade.
One of my proudest moments was when he worked as a team to pass the ball to another kid and that kid got a goal. The other kid ran to the coach for high fives and Will went running after that kid and gave him a big congratulatory hug! My heart was full.
Afterwards in the players' meeting, the Coach reviewed certain skills and awarded stickers for various skills he noticed displayed during the game. When he announced the first award - "E for Effort" - one player began pointing at Will and insisting it go to Will for playing so hard. Wow! What a great team and sportsmanlike behavior! (Will did in fact get the Effort award.)
Coaches that care, that want kids on their teams and are intentional in building up young players, parents cheering (& laughing because kids soccer is pretty awesome), new friends, and our happy, confident player who wore his jersey all day long with pride...
this soccer season is off to a great start.
|Player's huddle - love Will's arm on his coach|
at 10:12 PM
Today, our Ellie Girl danced in her first dance recital.
After an awful month with a new diagnosis of Perthes Disease in her bone, a flare up causing 19 days of intense pain and immobility and sleeplessness, use of a cane and wheelchair, today I just sat in the dark auditorium in tears of gratitude and relief.
When the flare up began, I didn't know if Ellie would be able to participate in the recital at all.
Today, I watched my daughter dance & sing for 3.5 minutes to Raffi's Baby Beluga and I've never been so happy to hear that song (or relieved to not have to hear it again!)
This morning, I put makeup on my daughter - a little eyeshadow, pink lipstick, blush and lots of sparkles.
Lately she's been telling me "Mommy, you aren't perfect but you're bootiful to me."
I told her she is perfect for me. She wanted to know if she was "bootieful" too. I told her she is so beautiful - she is kind to others, she is tender hearted, she is sweet and smart and hilarious and creative and a thinker and yes, pretty and beautiful.
Today, my daughter was able to dance without her assistant on stage! Today, I remembered being engaged to R and together going to this same studio's dance recital 13 years ago to watch Sarah in her dance recital... our flower girl. Today, she is in high school and has been a brilliant assistant for our Ellie.
Today, my girl danced on stage with her best friends. She was one of the girls - just like her friends. She wasn't different or defined by her abilities. She was just a typical four year old who sometimes missed a step (or few) & loved the stage.
Today, family drove in from all over Texas and we filled lots of seats to cheer for our Ellie girl. 4 grandparents and 2 greats! Oh she is loved!
Her daddy is setting a high standard for boys in her life and brought her a dozen pink roses
Her aunt and uncle surprised her with her first flower delivery!
So I began to think maybe it was about me.
But I quickly realized that maybe it was about both of us. I've had a lot of "normal" ripped away from our parenting experience and I didn't want one more thing ripped away.
I'm not a dancer nor was I as a kid - not past age 9 at least. I was the girl always in the back row and probably a step or 2 off. And I feel okay about my life without dance abilities - I've had other things to be proud of. So it wasn't about seeing my daughter excel in dance because that was not an area of excellence for me. Seeing my kids excel in any activity is not my expectation - I'd prefer they do things they can enjoy and work on to improve and make friends and take joy from. Rather, it was about seeing my daughter have the opportunity for the experience. I wanted this for her - in part because I fear it may be her only opportunity. I don't know what the next few years will look like as we figure out this bone disease but I fear she may not be able to participate for a few years and that when she is healed and able to fully participate, I fear that the arthrogryposis in her joints will have created a big gap between her and her peers. At age 4, the gap isn't so big - quite a few of the girls couldn't get down and up for the flash step today so she didn't stand out. But that gap will widen and I'm afraid as she gets older that she may not feel comfortable putting herself on stage when her differences are more visible and the steps more technical. I could be totally wrong but I'm trying to think forward and hated to see her miss the opportunity while she had it and while she had worked hard all year for it.
We have tried to parent in such a way that whenever our kids have expressed an interest in an activity, we've worked hard to make that happen. When Will has wanted to try various sports, I call sports recreational therapists and have custom equipment created for him to enable him to participate in the sport. I've called coaches and explained his situation and brainstormed and encouraged them to give him equal opportunities. We've set up meetings for Will to show coaches that he can in fact participate. For dance, I hired Ellie an assistant and found a precious teacher and studio that would be gracious and welcoming and embrace her. We have worked hard behind the scenes to ensure they have the opportunities to dream and achieve and participate.
Our kids are still figuring out their interests - I have no idea what they may excel in but I want them to know that they have options and that we are proud of them for trying things regardless of their level of achievement. It matters to me greatly that they each always know we believed in them. I need my kids to reflect back on their childhoods and their opportunities as evidence that we and their grandparents and their teachers and coaches and peers believed they are worthy and capable. This matters. I want them to be able to participate in conversations with peers - to have shared experiences and say they too have played baseball/soccer/been in plays/danced for that studio in a dance recital/etc. It's another goal of ours that we show their community that they have more similarities than they do differences with others. We do this in part by ensuring they have common experiences.
Mostly, today mattered to me because I believe it will matter to Ellie someday. I believe she needed to see her family rally around her and smile and beam and be so proud of her. I believe she needed to feel beautiful and sparkly and fancy. She loves music and dances around the house and today her spirit came alive on that stage as she danced for the crowd. Today she wasn't the girl with the diagnosis or the disease or the pain. She was another precious little girl on stage dancing her heart out - and she will always remember her first recital. Today, this mama cried tears of gratitude because this recital for my girl mattered - for both of us.
at 11:54 PM
3 Sundays ago, Will woke up sick and so Ellie and I went to church together. After church, I surprised her by rushing across town to take her to see Cinderella. I was the weird mom who kept gettig teary eyes and kissing her during the movie because seeing Cinderella was on my list to do with " Ellie in the Belly" during the uncertain days of our pregnancy when we didn't expect her to live and I was simply overcome with gratitude to be seeing it with her at age 4.5! She really was happy although by the time I took the picture below it was past nap time and she was done. We headed home to our boys and had lovely naps and a long walk together. Ellie took a bad fall during the family walk but was able to recover and the day was just so wonderful.
For the last 19 days, I've relieved that day over and over as the "day before the new diagnosis." It was such a good day with my daughter and I had no idea what was a few hours away.
Monday started like every other school day- rushed! Ellie and I were hanging out at home- doing chores (me), playing babies (Ellie) & hanging out outside on that beautiful spring morning. Ellie was happy and singing and playing so happily. Until suddenly she wasn't. She took a few falls but due to her arthrogryposis, this is normal for Ellie. She has a high pain tolerance and generally recovers quickly. But after the 3rd fall, at 11am, she wasn't recovering. She also wasn't walking. Nor was she crying; she was screaming. I tried my usual tricks to comfort her and get her back to playing but she wasn't able to calm down or bear weight. So I decided we would run a few errands and surely that would distract her (& give me a better idea if something were wrong.) For the first time in my parenting, I had to leave a store due to a screaming child. I tried to carry her like a baby in to the grocery store to get dog food but part way across the parking lot I had to turn around because her screams were unbearable. I waited until 1pm and then called her pedi. At this point, I assumed she had possibly broken her leg due to a fall but I also kept second guessing myself because she has AMC and falls a lot and maybe this was just a weird reaction to a fall. Her dr said to bring her in ASAP. Because I was in denial, I asked if she could nap first ( this was dumb- she was screaming- no way she could have napped!) (I hold nap time very sacred.) After an examination with her pedi in which she screamed at his touch and refused to let me hold her (very unlike her) and wouldn't let us move her from the stroller and screamed in agony when I drove over railroad tracks or hit a pot hole, we knew something was indeed wrong & were sent for xrays. The xrays were clear. So we were given narcotics and told to try to get through the night. We were up all night long & by 8am we were back with the pedi where we ran blood work and began exploring other possibilities. I still thought tiny fracture.
I tried taking her to school to eat with her class and my parents took her to see Frozen on Ice.
headed back to Dallas, met the other grandparents there who flew in to offer relief and help, and doctors suggested traction. This caught me off guard and caused me to panic so I quickly googled it and began asking questions. The doctor agreed to let us try modified bed rest first with the understanding that if we didn't see pain relief in a few days we would put her in traction.
The next morning, her rental wheelchair arrived. Seeing my daughter who just 12 days prior had been happily walking and playing to now being in a pediatric wheelchair in our home for the first time was incredibly hard. Words can't describe and I'm not ready to go there on a blog. Also, the rental had fur lined seatbelt covers which I removed immediately because weird! Also gross!
For some reason, perhaps because this disease wasn't on my radar, this has been extremely hard on me. Perhaps it was the unexpectedness or the uncontrollable pain. Certainly the night after night of screaming in pain and sleeplessness didn't help. At all. Perhaps it was because it happened during Lent & my heart was already heavy. We spent Maundy Thursday at the hospital in Dallas. A wheelchair arrived at our home on Good Friday. These last few weeks have felt dark and lonely. I've been afraid and sad and raw. I have felt overwhelmed and past my limit. I have felt abandoned. I had a hard time seeing hope or finding God's hand in this too.
I'm still having lots of feelings and struggling and wrestling with God but I've had sleep this week so my emotions are doing better. Also, taking her in public in the chair hasn't been nearly as difficult as I anticipated. Honestly, I've gotten far more states/questions/rudeness in being in public with a kiddo in prosthetics than with a wheelchair.
We have found lots of activities that can be done sitting down: crafts, bed baronies, doll house, water table, pedicures, and more!
Today, Ellie began to walk! She was on modified bed rest for a week and today felt like she was ready to try standing and walking. She's limping and gets tired easily but I'm so so so thankful to see her upright and pain free and able to move independently again. My heart is feeling lighter again and hope is creeping in. (Sleep makes such a difference.) (maybe so does time- I've had a few weeks to start wrapping my brain around this dx and research and ask questions.) I'm trying to remember that Jesus shows up in the body- when neighbors and friends and family call and text and come visit and drop off dinner- that is God using others to love us well. I am not alone- despite my feelings. We are held close even when we feel alone and raw.
Going forward... I'm not sure. I don't know how often Ellie will experience flare ups. I understand the disease generally lasts 5-7 years. Hopefully she won't need surgery. Hopefully she won't develop arthritis or require an early hip replacement. I assume that now that we have a diagnosis, I can be more aware and sensitive to her pain or events that may require more walking and try to actively prevent a flare up with medication or providing her more opportunities for rest or renting a chair or getting crutches. We go back to her specialist tomorrow so I will know more then. I keep trying to pin down how to feel- I've emailed Dallas pt and I've asked friends and family in an effort to determine if this is minor or a big deal. I find online support groups and entire blogs dedicated to "journeying" with this disease which makes me think it's a big deal.... But compared to my kiddos' other lifelong diagnoses, this disease feels relatively minor. Compared to our friends who are fighting for life- this is nothing. This is doable. I've come to the conclusion that when in the midst of a flare up, it is a big deal because the pain is agony. It can be a big deal when treatment involves no mobility for a previously active child. It feels big to me because Ellie has worked so hard and surpassed so many expectations by being able to walk at all. It feels like another thing ripped away from us. I struggle wondering how this disease may affect her in the next few years. There are ao many unknowns. But. I also believe that when we get her pain under control and when she is able to live her life again (attending school and dance independently, playing outside independently, etc,) then it will become a minor deal. I've lived the reality of seeing my kids with diagnoses that should limit them and don't. Ultimately, I believe Perthes disease will be another part of Ellie's story- a hard part- but it won't define her. I've seen her feisty, sweet, funny personality return this week. I've been given the gift of hope again.
(Sorry- long post!)
(Thanks for sticking around!!)
The irony of Will competing and advancing in his first speech meet has not been lost on me. In fact, I may have been the only mom in the audience yesterday with a tear (or 3) in her eye. You see, we've been watching Will's moth and jaw since those scary ultrasounds. Part of his syndrome can include jaw and mouth complications. We began meeting with his pediatric craniofacial surgeon when he was just a few days old in the NICU. He began speech therapy at 3 months old and had 2.5 mouth surgeries by age 2.5. (The half surgery includes that time they put him under anesthesia and realized his jaw wasn't big enough to complete the operation on.) We've traveled as far as Boston (twice) to get second opinions from one of the world's most renowned pedi craniofacial surgeons. (Turns out, we had a world renowned one closer to home too!) We continue to see his surgeon for consults and to explore possible options. By age 6, he began regularly seeing an orthodontist. Few know this side of his medical journey as I suppose, limbs are more obvious. Also, we don't focus on his differences so it just is all part of our normal.
Goodness the tears and many questions I've asked of that surgeon. If I could go back to that young, scared mama, I would assure her that yes, he will eat ice cream cones no problem. And yes, he will be a lover of words and expression. And yes, he will even win the first round of his first speech meet the same week he is preparing for a speaking role in his 4th play!
Except maybe I wouldn't take all that wonder and fear from her. That mama needed to learn to trust her God and to see Him work miracle after miracle with her son. Without that wondering, maybe this mama would take too much for granted.
Will didn't win the second round of the speech meet yesterday. But, oh the knowing of his victory over medical complications & his courage he displayed to go alone in front of the judges and audience! We are so proud of him. We are so thankful for this journey- though it is sometimes hard and grueling, the joys are great and the miracles we get to see (or hear as the case may be) are precious. This boy amazes me.
at 9:56 AM
I kind of most definitely slacked off of blogging during 2014. In fact, I've had a growing mental list of blog posts and have sort of kind of intended to actually write them but then was distracted by books or children or rain or sunshine or really anything that didn't involve opening up a computer.
So this may be the longest post in the history of ever but I wanted a record somewhere (because we all know I will never get around to scrapbooking it) of what we did and experienced in 2014.
I realize 2015 started 20 days ago... I started this post in 2014!!! Hopefully this is not indicative of another slow blogging year to come. I won't tell how many books I've started and completed in 2015 already - it's a significantly higher number than the amount of blog posts I've started and completed. I did just send my final batch of Christmas cards a few days ago so at least blogging isn't the only thing I'm behind in.
I have several posts rattling around in my brain - I really want to describe in more detail our Champions experience and what that meant to our family. I will do that one soon. I also have a few other ideas floating around in my head about parenting kiddos with differences and walking alongside those in your life who are hurting.
In the meantime - feel free to just totally bypass this ridiculously long post and know that I do want to return to blogging more regularly - I just needed to clear these off my brain.
Without further ado...
(Seriously - skip this post and return soon for a shorter, more substantial one. This is really just for my own records. It's my 2015 resolution to get this blog thing printed. Also, it's my NY Resolution to keep my kitchen island clean. I'm doing fairly ok on that one.
You've been warned - this is looooong.)
We kicked off January with Will being honored at his school as the Special Kid of the Week! He was honored in a school wide chapel of having the character quality of contentment. We also had a family day in which his great grandmother and grandparents came with us to the school. Far away grandparents and even his friend in Canada with his same diagnosis sent in videos to surprise Will and his class with! Each family member and friend shared an affirmation of Will - something we really love, respect, and admire about him. Then, each kindergartner and his teacher shared something about Will they admire. WOW! This was an emotional day for his mama!
One day after some doctor's appointments, I took the kids to a park in Dallas.
Ellie climbed a flight of stairs independently for the first time!!!
Will was in his class talent show and it was AWESOME! Will chose to perform his talent of "running barefoot and sword fighting." He chose "Eye of the Tiger" for his background music. It was so much fun.
(And as his mom, I see him run all the time but it was fun to see the miracle of Will running on his feet through the eyes of many parents who had never seen him do so without prosthetics. His balance and agility are incredible.)
Martin Luther King, Jr Day was one of my very favorite days of the year.
On a whim, Ellie & I decided to try potty training. Ya'll. She did it. In a day. She had 1 accident and never looked back. She napped trained and went all night too starting that day. It was incredible. I had feared potty training due to her diagnosis but she suddenly was ready and just did it!
I had also started that day feeling guilt because I didn't have any cool plans for our day off from school. I hadn't created any special theme days or activities to study or crafts to create. But then, I sat outside doing my Bible study and reading my book and soaking up the sun as I watched the kids play and realized that what they really need is time to just play. They need to be kids. They need freedom and unstructured time to use their imaginations. They need to play with neighbors of varying ages and learn how to problem solve on their own and how to get along. They need independence from me in their play. This became a defining day really for helping me develop my own parenting philosophy. They spent hours playing with neighbors,
and even exploring a nearby creek in the woods.
Such a beautiful, fun day. Exactly what we needed
(This is TX in January - shorts and playing in a creek.)
Some of our dear friends moved all the way to CA! We hated saying goodbye but tried to be intentional about spending time together before they left. Our "More Ellie" really misses her "Other Ellie."
Will was chosen to represent Texas as the Children's Miracle Network Hospitals Champion Ambassador!
This was such a huge surprise and honor. It led to one of the most amazing experiences of our lives.
In 2014, Will continued his love of dress up. I love his imagination.
This picture was taken the day before "inlaws on ice." It was 75 degrees and beautiful which explains why I had no coats or socks or warm anything in our car.
And then we had the epic "Inlaws on Ice" adventure in which we travelled 90 miles in ice over the course of 26 hours due to a horrible scary ice storm. We did this while trapped in a minivan without coats, water, or snacks and with my parents (hence, R's nickname for the "adventure.") We have never been so thankful for our friends who offered us beds at their farm and a great fire when we couldn't get all the way home that night.
The next day, we enjoyed freedom from the minivan and sledding!
At the musical "Little Mermaid" - just a few hours before the great interstate ice capade.
So thankful to crash at our friends' farm for the night.
Spring fishing with daddy
The kids & I road tripped to see our best friends for a few days & we had a blast! We played, we talked, we rested in the way you can when you are with your favorite people... it was such a good break away for us.
In the spring, Will got new zancos (prosthetics.) Unfortunately, these haven't worked out so well and he doesn't wear them.
Fortunately, they led to us getting really creative and trying to figure out an alternative for Will. He doesn't fit the "mold" (in so many ways:)) of the typical amputee. He is actually functional without prosthetics! Prosthetics slow him down and this leads to social issues at his age when speed on the playground counts. They are also hot which meant he generally goes barefoot all summer.
We ended up with an amazing solution thanks to a friend's research, a cobbler in Oregon, & our brilliant, creative prosthesist in Dallas - Will's first pair of custom shoes that fit his feet!
(Pictures to come soon.)
The kids ran a local race. This was Ellie's first race to run in. We were so so proud of both kids!
The kids ran a local race. This was Ellie's first race to run in. We were so so proud of both kids!
The race ran out of medals for kids but Will graciously shared his with his sister since it was her first race.
This is Will's cursive by last spring! His kindergarten progress was amazing!
Also in March, Ellie got a big girl room! A wonderful family passed their daughter's bedding and chair and bed and lamps down to Ellie after they realized some of their fabrics were the same as I had used in Ellie's nursery bedding and window treatments. I love her big girl room and absolutely love all her "new to us" pieces. We are so thankful for fabulous hand me downs from sweet friends!
AprilIn April, we went on our first family camping trip with some friends. A major thunderstorm hit during the night resulting in possibly the coldest night of my life. (Note to self - get a sleeping bag!) We ended up loading up cars at 1am to keep our stuff from being drenched and then spent a very cold night in our leaky tents. By 8am, we were headed to Cracker Barrel like a bunch of wet rats! I've never been so glad for a hot shower. Now I just have to convince my husband to try camping again with me. Also, to invest in a tent without a hole. Also, I'm going to check the weather next time before attempting.
By April, Ellie became a jumper! This trampoline has been awesome for wearing out energy and building muscle strength.
On a beautiful April day, the kids hosted a lemonade and popsicle fundraiser. It was a great success!
Ellie got pretend makeup this year in her Easter basket. Her daddy, her Cookie, & her Mimi were gracious enough to let her give them makeovers.
We have been working hard at bike riding!
In April, I finally took my first set of bluebonnet pictures ever! This seems to be kind of a tradition for Texas families but somehow I've just never done it.
Ellie danced in her dance studio's spring show - love this girl & love her dance class & precious instructor. I'm so proud of her.
(Also, I'm not crafty at all but managed to create these little no sew tutus for her class so they could match in their spring show. Ellie loved it.)
And Will headed to "hand camp" for kids with hand differences. We made lots of friends and had a blast reconnecting with old college friends and West TX friends.
|photo credit: Texas Scottish Rite Hospital for Children|
Will got an art lesson from this professional artist with hand differences. They drew awesome dragons.
The rock wall ended up being a brutal experience for us. Will got scared and was unable to make it to the top. This meant he was unable to do the zip line. He was crushed and we didn't know any of the other kids watching so he was embarrassed too. It was just an awful, gut wrenching, heart breaking, character building, tough experience. I am confident he will be able to do it someday. It was so hard as his parents to not be able to help him or push him harder or somehow fix this for him. (There's a life lesson in here somewhere.) Victory someday will be so much sweeter for Will on that rock wall.
He did, however, have a great time creating art.
In May, we travelled to Virginia for an old friend's wedding. It was beautiful and such a fun weekend of celebrations.
Ellie & I hosted our annual mother/daughter/grandmother tea party in May. I almost didn't do it this year because I felt overwhelmed in May and it seemed like the easiest thing to let go. But Ellie begged so we went for it. I am so so glad I did. The girls really got into it this year. They each brought books to donate to our local Children's Miracle Network Hospital for kids in the hospital and while they played, the moms each made hand scrubs which Ellie and I delivered to the hospital for moms of kids who were hospitalized on Mother's Day.
I decided this year the little girls were old enough for "real" tea cups and used the china tea cups with them (I've collected it from estate sales and borrowed some from family.) Wow. The girls were so so excited to use real tea cups. They were so careful and precious.
We went around the table to share something we love about our mom or daughter and Ellie said that the tea party was her most favorite day of her whole life.
I am so glad we did it.
Ellie was such a helper this year. She made and decorated the cupcakes and helped serve them. Also, I had a fancy tea party dress for her but she really wanted to wear this pink dress up dress so we went for it. I love how much ownership she took in this year's party.
Sweet sweet friends.
Favorite picture of my kids ever. I have a dream of someday meeting a sculptor who can turn this picture into a bronze sculpture for my yard at a discounted price.
In May, Will graduated from Kindergarten!
Also, the city named May 14 "Will Butts Day."
Yep. He got his own day.
Perks for being the Texas Ambassador Champion for Children's Miracle Network Hospitals.
Will & the Mayor
Press Conference. For my 6 year old.
In the spring, Will & Ellie began to beg to have sleepovers together. I love listening to them whisper as they fall asleep. One night, I went to check on them and they were sound asleep holding hands.
My heart melts at the sweetness and purity of their friendship.
I am so grateful they have each other.
By the late spring, Will had become a full blown book addict. I LOVE that he loves reading. One of our favorite activities is to read our novels side by side while Ellie naps.
In 2014, he read:
lots of Geronimo Stilton books
a few Magic Treehouse books (these drive me crazy)
books 1-3 of the Boxcar Children
Harry Potter Book 1
Swiss Family Robinson
Jungle Book - twice (he really loved it & laughed a lot)
Three Musketeers (condensed version)
Jackson P. Jones
Hardy Boys books 1-2
Half Upon a Time
Ralph S. Mouse, Runaway Ralph, & Mouse on a Motorcycle series
How to Eat Fried Worms
lots of Encyclopedia Brown books
half of Call of the Wild (then we realized it was too over his head (& mine))
He also loves Shel Silverstein and has read each of his poetry books cover to cover. I often hear him giggling as he reads those.
I can't tell you how many places I've found him with a book in his hands - he will read for hours. I'm so very thankful.
He says in Heaven he hopes he can fly while reading.
I loved this day on the beach. I was in my chair nearby with my novel. Ellie was napping between us. Happy mama. Happy kids.
In late May, we took a family vacation - our first Disney cruise!
Ellie loved meeting the princesses. I couldn't believe she and I waited 90 minutes to meet princesses but when she told me how very happy she was, I was glad (mostly) that we did it.
One day, Will saw a man on an island who is an amputee. Will asked us if he could go meet him and so we told the little extrovert/future Senator that of course he could. Will introduced himself and we learned that the man is a veteran who lost his legs in Afghanistan. We met his family and his friend who is also an amputee and thanked them for their service. The rest of the trip, whenever Will spotted them he would run to him and high five them. Will called the three of them the "zanco club" since they all had prosthetics. Will loved meeting "real soliders" who also wore zancos and I think they liked seeing how functional & full of life Will is as an amputee.
My little pirates
Ellie loves to dance with her Daddy. She calls it "marry me Daddy!" Apparently she thinks marriage begins with a dance. Our hearts will be crushed the day she realizes she can't actually marry him but for now - they dance.
While we enjoyed the cruise, it really helped solidify how we want to travel with our kids and what kind of travel we most enjoy as a family and factoring in our various personalities and disabilities.
So - a story about one of the best days for our family in 2014...
For one of the island days, I began researching something to do. I knew the goal was to get to a beach because we love the beach and everyone would be happy.
Typically in this marriage, R does the travel planning. He's good at that and enjoys it. For some bizarre reason, I did the travel planning for this particular day.
I found a sailboat to charter. In college, I took sailing for PE credit so pretty much because I sailed on a little river in a little sunfish 15 years ago, I'm convinced I am a sailor. R gets nervous every time I rent a sailboat at the ocean. He suspects I have no idea what I am doing. He may be correct but don't tell him that.
(For the record, I got an A in that class.)
(For the other record, I can't remember the difference between starboard or port or how to jig. Or anything else really. But I'm cool with winging it. This stresses out my husband.)
So I found a sailboat. R gave me the okay because the sailboat was far cheaper than all the official Disney excursions. Also, the sailboat came with a Captain.
However, there were some factors that had us both a bit uneasy the night before - one of which was that no one knew where we were going to be the following day - not our families, not anyone on the cruise ship, or us for that matter. We ignored that uneasiness, packed a backpack, caught a taxi, & left for the best adventure ever.
Honestly, our kids & my husband will tell anyone hands down that our day sailing with Captain Ocean was one of the most fun things we have ever done.
Captain Ocean (& his first mate Uncle Ray Ray (as the kids called him)) picked us up by dingy and took us to the 1927 sailboat where Ocean was raised. He literally grew up on an antique wooden 37' sailboat sailing around the world. He told the kids stories of pirate chases, hurricanes, sharks, & exotic places. We were all enthralled.
Will learned how to say ahoy to other sail boats via a conch shell
Ocean sailed us to itty bitty islands and deserted beaches. The kids played on quiet beaches, jumped off a tire swing into the ocean, and explored.
We taught Will how to snorkel! He LOVED it and did amazing! The first animal he saw underwater - a sea turtle!! Ocean swam down and spooked it and the turtle surfaced right in front of Will's face. It was majestic and powerful and awesome.
We also "met" a barracuda who hung out by our boat during lunch looking for droppings from the kids.
Will told Ocean and Ray that he wanted to find a coconut - so at one point, Ocean & Will and Ellie boarded the dinghy armed with a machete, a knife, and Will's plastic sword (he said he needed it "just in case.") Together, they headed to a deserted beach and Ocean taught the kids how to locate a good coconut. He then climbed the palm, cut it down, & taught the kids how to drink coconut milk. Just today, 9 months later, Ellie told me all about that moment.
I don't have many pictures from that day because my camera broke but it was truly an incredible experience. We decided that what made it incredible (& therefore helped define the way we want our kids to experience travel) was that it was an adventure - there was some mystery and unknown. Our kids were able to truly explore new places. We literally set them free and they explored - at one point, I was floating in the ocean, Will was snorkeling nearby & Ellie was playing in the sand on the beach and it was all just so peaceful and perfect. It was quiet - there weren't crowds or tourists or anyone telling us what to do or where to be. There weren't people at all on some beaches. There was no entertainment. Don't misunderstand me - we love great shows and enjoy entertainment but I also want my children to be able to entertain themselves and sometimes just be without having any entertainment in their faces. Ellie made a "baby" out of a leaf - Ocean poked holes in it for a face and somehow he managed to keep it from flying off the boat. She played with "Leaf Baby" all day. Will explored and ran down quiet beaches. He played on an old tire swing. He watched fish and searched for underwater treasures. He fought imaginary pirates. They listened to Ocean's stories and took naps on the deck of a sailboat. It was just a perfect experience - except that it ended way too soon. We've already been figuring out our next adventure and dream of perhaps sailing a bit further with Captain Ocean - maybe a week on a sailboat next time?
A few days later, we headed across Florida to join my parents at our beach spot we visit annually. My grandfather sold it in 2014 so this was our final visit. I've been going since I was a baby so it was hard to realize it's not in our family anymore.
Of course, the sand and water might be in our blood so I am sure we will find our way back.)
I love this picture of Will & Ellie with Cookie & Lovie
Our Fam - Beach 2014
I could watch this kid run on a beach for hours. The miracle of him running seems so much bigger to me when I can see his footprints.
I always think of this quote:
"There is no footprint so small that it can not leave it's imprint on the world." - anon
This might be my favorite of the two of them ever.
And of course, my Ellie girl walking on the beach gets me too. When we were pregnant with her, our perinatologist gave us 3 days to escape to the beach. She was not doing well and our doctor knew that taking "Ellie in the Belly" to the beach was on my "list" of things to do with her while I could since we didn't know if she could live. Our dear doctor finally gave his blessing and we flew off as fast as we could (delayed by weather overnight...) Her life is such a miracle and the fact that this year she could walk BAREFOOT on the beach was humbling and amazing. I am so proud of her work, her joyful spirit, her zest for life, her humor, her perseverance, and her grace. She is Eleanor Grace - full of light and grace. I love watching her walk this sand every year. My faith is so bolstered watching my miracles.
Swimming with Cookie. Ellie grew gills to match her brother's this year. My babies just love the water.
She is also content to dig for hours - like her brother. Give these two some shovels, buckets, and plastic animals and they stay busy.
Snorkeling for sand dollars with Lovie
This must have been a good book
Love walking with her on the beach
Will & I had our own tennis tournament. He won.
Bike riding is really really hard for Will - understandably. But at the beach he can do it so well because it is so flat! We had fun riding bikes to dinner!
Ellie practiced riding her tryke (another one of those skills some thought she would never do.)
A nap on the beach
I taught Will how to body board. It did not always end well but he learned.
Both kids loved crab hunting this year! It was really fun to do this after dinner.
Ellie learned to slip n slide! What is it about these things that can be so entertaining for so many hours?
Fourth of July at the lake!
My kiddos love the water and I am so grateful! Ellie's swimming really took off this summer. I love that I can now sit on the side of the pool - she can independently swim and doesn't need me right there with her!
Will attended Pine Cove Day camp this year. It was an incredible experience. Unfortunately, my computer deleted almost every picture I took from July - October so I have very few pics of camp. Our best friends came and stayed with us all week while the boys went to camp. They had a great time, grew in their faith, made friends, learned new skills, and grew up way too fast that week! The mommies & daughters had a great time too!
I emailed with the camp director months before camp to make sure the camp could handle my boy with his prosthetics. I wanted to make sure they would let him try anything he was comfortable with and not place limits on him. I also wanted to make sure we were on the same page as far as handling curious kids. Wow. The director emailed me and told me he had been praying for my Will since before he was born after receiving an email about him from someone. Later, Will & I went to the camp to meet with the directors and again I was at such a peace that they would embrace my child and his differences and that they absolutely wanted him to have the full camp experience. By the time camp came, I was pretty nervous. Having my best friend with me helped calm my heart and knowing that Will had a friend eased my anxiety as well. The counselors quickly surrounded our boys, made them feel welcome and wanted, and whisked them away for a blast. They came home each afternoon completely tired but happy. It was such a good experience for growing Will's faith and confidence. It was probably good for his mom too.
This is Will and his counselor. During the closing ceremonies, the counselors speak truth over each child and affirm character qualities they have noticed that week. I loved this.
August meant lots of lake days for boating and tubing and fishing
Look at these fish!
We had an unseasonably cool summer so the kids spent almost every day outside all day - it was glorious.
We made it to a baseball game!
I'm so glad my kiddos are having childhoods filled with playing outside with neighborhood kiddos. One day, another mom and I filled our cars with neighbors and hit the pool together for a picnic lunch and swimming.
August around here is BIRTHDAY PARTY SEASON! (Also it means school is coming soon but that depresses me so I put lots of my energy into BIRTHDAYS!!)
Ellie fell in love with Dorothy and the Wizard of Oz this year so she requested a WoO party. Oh, this was a fun fun birthday party.
Every year I say their parties are my favorite ever but this one really was.
I surprised my little Dorothy with a Glenda costume... for me!
(Yes. Yes I did.)
Her Honey surprised her with a box of costumes for her friends to play dress up with.
We had so much fun decorating Oz - I went with the Over the Rainbow song (which I've sung to her since birth) and did lots of rainbows and whimsical decor. Someday I'll maybe do a post on their parties.)
Ellie and her friend (a munchkin)
Ellie & I made her birthday cake as rainbow cakes in mason jars - so fun & so easy & makes a fun impression.
I definitely need to do an Oz party post. We had so much fun with the decor and the food and the activities and crafts and the dress up clothes for all the girls!! I so love a theme and Ellie was into helping this year which made it even more fun.
Moving on -
Will started 1st grade in August!!
How is this even possible?
I dreaded him going to school til 3pm almost every day!! (thankfully, he gets out early on Fridays.) I really like having my people home with me. I like not being on a school schedule or running pick up in the middle of the afternoon. I like everyone to get their naps in. It's January and we are still struggling to adjust to no naps for Will (he does rest on weekends) and short naps for Ellie. In fact, Will told me yesterday that he thinks he maybe still needs a nap time!
But - other than that, first grade has been awesome!
Then, it was time for Will's birthday! For the first time, I didn't host a kid bday party at home.... we headed to the lake! He wanted a tubing/fishing/lego party.
We sent invitations on legos (kids had to assemble the legos to read the invite.)
I got very nervous when a big storm was supposed to hit the morning of the party and began researching plan B. Thankfully, a friend from Children's Miracle Network Hospitals who is also a local CBS meterologist hooked me up with an early morning text of weather predictions for our party spot and gave me the go ahead for a lake party. Whew! So thankful for that connection and the weather turned out perfect.
He had a blast with his little group of buddies. In fact, the boys were having so much fun that we texted parents to extend the party time and many stayed several extra hours. It was a really fun day & so fun watching these little boys play hard together.
The boys fished and played legos and had nerf wars and really had such a good time. And I loved how easy it was to do a party at the lake.
Will got a bb gun for his birthday and has had fun learning to shoot cans with his dad.
And then my Ellie girl started school for the FIRST time.
Also, when did this happen?!?
She is in preschool and she loves it.
She's with her two best friends.
Also in September, Will participated in a local "Learn to Golf" program sponsored by Texas Scottish Rite Hospital for Children. He received the invitation and was so excited to give golf a try. I was so excited to be able to meet other local families who go to TSRHC and to work with professionals who knew how to teach golf to differently abled kids. We had been at a golf event once where the pro had no idea how to teach my child with limb differences and that was very discouraging to Will and me. This however, was empowering and amazing! He learned a lot of basic skills and had so much fun. Plus, every kid was given a golf bag and set of clubs! (Technically, Will doesn't have his yet because they didn't have any to give away that worked for him but they've told us if we can go see the pro someday in the metroplex he will make Will a set.) Most importantly, Will made a new friend there and has already had him over to play. While I am so glad my kids are mainstreamed, I do like that they also have a friend with differences who can relate to them on that level.
I am certain there were more pics but again the computer deleted them.
Thankfully, I have one from Halloween.
This may come as a big surprise but Ellie went as...
(Along with every other girl in America.)
Will created his costume based out of our dress up clothes. I am still unclear as to exactly what he was but some sort of knight/ninja/superhero? He was happy. So I was happy. Their costumes cost me $0. From now on we are shopping out of the dress up bins!
Finally it was time for the Children's Miracle Network Hospitals Champions trip!!!
Will's school partnered with CMNH, Dairy Queen, and CBS to do an incredible send off pep rally. His precious principal wrote a script that I will save forever. She dressed up as a cowgirl and led the kids in a cheer and precious story about Will.
The cheerleaders, drum corp, & drill team all performed. About 75 friends and family came to cheer on Will and my heart just overflowed at the love and support our family has been given as we travel this unique road.
I'm working on a post about the trip so am only going to hit a few key moments but suffice it to say, it was AMAZING. It was over the top incredible and I can't wait to finally sit down and share more.
Will wore his obnoxious "big Tex" hat all over Washington DC.
We had fun exploring Capitol Hill
The champion ambassadors from each state.... oh these kiddos and their families. They touched our hearts and quickly became precious friends. I am so grateful to know each of them. Words can not describe the feelings of finally being able to connect with so many others who are parenting kiddos with unique challenges. There is some serious courage and perseverance and stories worth celebrating in this picture
Representative Louie Gohmert gave our family an incredible experience on Capitol Hill. He was an amazing host and really blessed us.
Will and his buddy Nate from FL
Will & Luke from KY
This was one of my favorite moments- Will playing tag with Miss America!
(Besides hanging out with Kira, he met Michelle Obama, Lady Antebellum, Nick Cannon, Marie Osmond, and more.)
|photo credit Kirstin Roper|
Will and his dad on live tv with Miss America
|photo credit Miranda Barnard|
More coming - I have lots of thoughts and words to share about the celebration of this miracle trip.
We spent Thanksgiving with Honey & G-Dad....
Will learned to play dominos with Honey
We loved getting to visit with Great Grandmother
Ellie got to be a flower girl for the first time! She loved it and did very well except for loudly whispering during the prayer, "how many more minutes until it is over?"
Mimi treated us girls to the Nutcracker Ballet! Ellie loved it. I was surprised at how into it she got but she really enjoyed the dancing and the story - even without any words.
Will was asked to light the city's Christmas tree and ride in the local Christmas parade!
He and Ellie had so much fun riding on their sleigh! They both got really into waving at people - Will pretty much waved both arms (like a flapping bird) the entire parade route!
The great perk for me was that I didn't have to take the kids to a mall to wait in line to see Santa - he and Mrs. Claus were on stage with us for the tree lighting so we got awesome pictures! Plus, Will sat in Santa's lap for the entire ceremony!
|photo credit Sheri Harden's friend|
Ellie started out very scared of Santa but warmed up to him eventually and then decided she really likes talking to him.
Our Fam - Christmas 2014
Christmas morning - stockings!
a sunny Christmas day - perfect for walking her new puppy
(When Ellie first opened this puppy, she asked if it could be her pretend "service dog" to help her)
Ellie, her Lovie & her Mimi
Christmas night tradition with the R's
Christmas round 2 with Honey & G-Dad!
2014 was an amazing year! We are excited to see what 2015 has in store!
at 11:52 PM