Wrapped around those little pinkies

For any of you who have been living under a rock (when it comes to my posts) and do not already know about my obsession with Ellie’s hands… let me let you in on a few things, here.

First, Ellie’s hands are puffy – they’ve been puffy since the day she was born and I describe them like little peach pillows.  Ellie is squishy – I KNOW you’ve heard me say this.  I often describe her as pudding.  Because, honestly, she feels like a bag of pudding, folks.  She’s getting stronger as she gets older, but to squeeze on those little arms, hands, and legs… she still feels like she’s full of pudding.  There’s a delicate tenderness about her and all this squishiness stuffed into this little bitty body is just too much for me to handle.  

When Ellie was about a year old, we decided to make a craft that involved painted hand prints.  I painted and stamped the hands of the boys, then painted and stamped Ellie’s hands, too.  When I looked at the final product, I felt like I’d messed up.  I must have only painted two sections of her pinky… how in the world did I manage that?  I grabbed her little hands to repaint them and low and behold… noticed that I had not missed a thing.  It was Ellie that was missing something – the middle section of her pinkies.  WHAT?  How had I not noticed this before?  How was she almost a year old and I never noticed that her pinkies were just over half the size they should have been?  Maybe I’d been too caught up in her pillow hands that I never inspected the littlest digits.

I later discovered that this happens sometimes in kids with Down syndrome and it’s called clinodactyly – a very short pinky that often curves in towards the other digits.  Well… it kind of curves, too.  Hmmm… news to me!  I’d searched her little palms for a single palmar crease (another outward sign that’s a soft marker for Down syndrome).  She doesn’t have the single line – but I’d failed to notice those pinkies.  It’s thought that when babies with Down syndrome are developing in the womb, they tend to fold their hands at a ninety degree angle (instead of curling them in more).  This is due to low muscle tone and is thought to be the reason so many people with Down syndrome have a single palmar crease.  Ellie’s palms look exactly like mine – not one, not two, but three lines.  She must have been great at making a fist as she developed.  Maybe practicing shaking her fist at the odds of her success!  (Get it, girl!)

So in the beginning, I determined that she did not have the single line, and went about kissing those soft pillow hands for months – never noticing this cute little pinky.  Until the epic painting craft.  I also noticed that Ellie’s painted handprints looked huge.  Well, they’re not big at all… but once painted and smashed onto a page, all that squishy pudding flattens out to make a very boxy handprint.  I can’t get enough!

Ellie came home with this artwork in her backpack and I’ve been staring at it, admiring those square handprints… admiring those tiny pinky prints… and internalizing all these different little things that fill me with joy these days.  I mean, really… who gets excited about pinkies?  This girl.  That’s who!  Tiny reminders of how incredibly blessed we are to walk this weird, crooked journey as her parents.  Reminders littered through our normal days reminding us of how lucky these little boys of ours are to know in the deepest depths of their souls what compassion, hardship, and unconditional love look like.  For these things (and tiny pinkies), I’m so very thankful.

 

Her purple people eater is adorable.  Can you see the tiny pinky in the pic of her with my glasses?  Funny, right?

Side note:  I didn’t even attempt to do the 30 Days of Thanks this month.  I’d tried it in the past and failed miserably, so I wasn’t about to start and stop again.  Maybe I’ll try again another year.  It’s not that I don’t have a billion things to be thankful for… I certainly do… I just get side tracked when I have the best of intentions to post something each day for a month.  February is congenital heart defect awareness month.  Wanna know how many facts I managed to post?  Ummm… four.  Yep – and I had a short month to work with.  October is Down Syndrome Awareness month… I think I got about 5 of those 31 days, and at least three of those were just shares from someone else.  Eek – I’m terrible at this.  So instead of trying to stick with something for a whole month… I’m going to try to double my previous attempts and shoot for 12 days of Christmas (not even 12 consecutive days… just 12 days between now and Christmas where I post something).  How’s that?  You think I can keep up with that?  I don’t think I’ve made 12 blog posts all year… but why can’t I do 12 in the next month-ish?  Ha!  Today’s was even a bonus on top of those 12.  Keep me accountable, will ya?  I have a lot to be thankful for and a lot of people who have poured into our lives that I want to thank.  That’ll likely be the focus, btw, turning the spotlight on to the people who have cared for Buggy (and me) through this journey.  People who care for hundreds of kiddos each week, and do so with the intensity they’ve had in our lives.  Stay tuned!

Our elf, Luigi, hanging around.  The boys are so excited about this!

There's a house in Piqua that has more lights than the rest of the state, I swear.  We had to see it!

Took the boys ice skating on Sunday afternoon - B wasn't excited about my selfie.

I can't handle the cuteness.  We had sick kiddos last week, and again starting Sunday evening.  We're back to healthy now... whew.  No fun.  Keykob enjoyed the cuddles nonetheless.

Aunt Sherri bought Ellie a super cute sparkly shirt.  Ellie approves!

Yep, this is how we act for Thanksgiving dinner!

Surgery #14

Today was another day of surgery.  When I say this is surgery #14, it's far from our 14th visit to the OR.  We're only counting actual surgeries and heart caths here - not scopes or other sedated procedures.  I actually have no idea how many times this girl has been under.  Wanna know how many times I've been under in all my (I'm not telling how many) years?  Once.  I've been under anesthesia once.

Anyhow, at home we're preparing for Ellie's big annual meeting for home care services.  We meet with the care manager for the Ohio Home Care Waiver... and with our nursing companies and hash out how Ellie's needs have changed and how her health status has progressed/regressed over the past year.  To get ready for this, I always spend a good bit of time compiling notes and medication orders and lists of appointments/hospital stays/ER trips and all that jazz.  We need all of this to determine her need for care moving forward.  I was pleasantly surprised as I compiled all of this over the past week.  Did you know that Ellie has only spent 13 nights in the hospital this year?  That's drastically lower than her past years.  And we've only made 15 trips to Dayton for additional appointments.  I know that for most people, they never spend 13 nights in a hospital room EVER... (me included)... but for Bug, that's a heck of a year.  Now, that doesn't mean that she wasn't sick or didn't have storms and seizures in our house... it doesn't mean that there were never days when she SHOULD have been in the hospital.  Part of the reason this last year has been so good to her is that when we do have emergencies or pretty nasty illnesses at home, we're well supported and able to deal with them with the staff and equipment we have on hand.  The fact that we have such competent people in our house everyday has much to do with our lessening need for ER trips and hospital stays.  I'm hoping that part of it is that Ellie's immune system is starting to catch up with her and is starting to toughen to the things she'll be exposed to.  I really hope this is a big part of her progress, too... especially since we're in the thick of cold and flu season and she's around other little kiddos every day.  These last three years we've hunkered down at home with her... not even taking her to church during the winter months.  Let's hope that she's getting stronger all the time and that she can tough through this season without too much difficulty.  Anyhow - I thought you'd like to hear all that good news before we start to go into how things are going for her today.

So today, Friday Oct. 19th:
We packed bags for everyone last night and brought bags for the boys over to my parents' house.  Buggy wasn't allowed to eat anything after her bedtime snack last night, but we pump her full of pedialite through the night to make sure they can set an IV today.  (This is the beauty of a g tube and a feed pump).  Ellie's notoriously a hard stick for IVs.  Flooding her with pedialite before surgeries has been our life saver in getting her ready for this.  One, a full belly of pedialyte makes her less crabby in the morning, and a well-hydrated baby is much easier to stick for the nurses.  Win-win!

So we arrived at Children's early this morning, lugging around enough baggage for a family vacation, and Ellie went back for surgery around 10am.  She was out of the OR after about an hour and a half.  They went in and removed some of the tissue build up in her airway and removed her lingual tonsils.  They did NOT need to do a tongue resection.  Whew!  She was slumped over sleeping when we met her up in TCU.  She clearly has episodes of pain and normalcy.  She watched Moana and Frozen, ate lunch & dinner and just polished off some ice cream.  The only concern so far came from the dietitian... she said Ellie's BMI has dropped and she wants to ensure that we bulk up the calories so that she stays on a healthy BMI curve.  Can I donate my extra weight??  Pick me, pick me.  The dietitian probably wasn't impressed with my casual reaction to her concern... but really, if this is all I have to worry about post-op, then I think it's safe to take a nap. 

We're supposed to do a capping trial tonight, but Ellie's oxygen saturation haven't been real pretty... so she's on supplemental oxygen... we'll see what they say.  As far as moving toward decannulation, her surgeon said, "slow and steady wins the race here".  Ellie's airway tends to collapse just above her stoma because the trachea puts pressure on it and weakens that tissue.  She may need reconstructive interventions here again... but we'll have to wait and see.  If her airway coninues to be too small after she heals from this surgery, we may have to wait until she gets bigger.  We're not holding our breath.  We're just thankful for a successful surgery and a happy baby.

Our boys are going on camping adventures tonight - yahoo!  Until next time, friends... thank you for following along and for all the messages of prayers & encouragement today.  Love y'all!!

After running around the pre-op room, we finally got her to sleep before she went back.

Not fully awake yet.

After lunch... standing up, throwing toys out of the crib with a mouthful of goldfish while watching movies.

This was Mookie yesterday after the Running Club awards.  I think he wore both of his Running Club medals to school today.

When I picked Kaleb up from preschool on Wednesday, we took this random photo before having a short mommy & me date.

Lucky #14?

After our whirlwind of a weekend, we’re settling back into our “normal”, bracing for the cold and flu season that is already upon us, but reveling in the amazing progress we’re seeing in each of our kiddos so far this school year.

Lance is now in first grade and while he has his bad days, his good days far outweigh the bad this year.  This is a welcome change from kindergarten.  We’ve found that if he can be a helper, his behavior is more in check.  On days when he gets to help another kid with math, he’s beaming after school.  At home, when he teaches Kaleb about the parts of a flower, or about planets, he’s calm and seems proud of the “purpose” he’s been given (plus, the nerdy science girl in me is stoked when they talk about photosynthesis and cloud formations).  While it’s sometimes hard to stay patient on bad days, and sometimes hard to empower him to find that purpose every day, I feel like we’re starting to see the kind of kid he WILL be… the kind of adult that might emerge from this spirited little boy.  I see someone who is a helper.  Someone with compassion and vast intelligence, but also someone with a fiery temper and impulsiveness that needs bridled.  Let’s see where that takes us and how we can build on that.  He just wrapped up his season of Runner’s Club and wants to take on basketball camp next.  Brandon and I are not the basketball type, but if that’s what he wants to try, by all means, kid… do it.

Mook with his Captain Underpants pumpkin

Finishing up one of his races... nice stride, kid!

Kaleb is well into his first year of daycare and pre-K at Shelby Hills.  Honestly, I thought that their daycare would be more of a babysitter before preschool.  Oh, how wrong I was!  The first week, he came home and told me all about China and about how he tried ginger tea and ate sushi with chopsticks.  Then they were off to Egypt and learning about pharaohs what a sarcophagus was.  WHOA!  He came home dressed for a mariachi band when they studied Mexico, told me all about the boat taxis in Venice on Italy week and brought home his own leaning tower of Pisa.  Then told me all about the deserts of Africa last week.  He’s a tiny world traveler and he loves to learn about other countries/continents.  This is all happening before he even starts his day at preschool.  I could not be more impressed.  Kaleb is going to try out for wrestling this week.  Brandon is thrilled.  I think this is a better fit for Kaleb than for Lance (Lance might get a little too rowdy).  I’m just hoping Kaleb doesn’t cry… he has already said he is going to tickle them… eeeek, this might be a wreck.  Kaleb has a more athletic build, so I wonder what his strengths will be.  He’s a gentle soul and is always updating me on who is friends are and how he “feels” each day.  Oh, how different these two boys are.

An African tribal mask

In Italy, you eat pasta.  Isn't this the cutest craft you've ever seen?

Kaleb made his pumpkin into Leonardo

My mariachi musician on the way home from school

And Ellie, crazy Ellie… she’s busy being destructive most days.  She seems to be getting bigger each day – seriously!  She’s a busy body and cannot be left unattended for any amount of time without coloring on the walls, climbing into the dishwasher (or stopping it mid-cycle), emptying out the bathroom cabinet, or decorating the living room with baby wipes.  She also finds random things to throw into the garbage and then “prizes” in the garbage she thinks need to be distributed throughout the house.  I’m not getting any new volunteers for babysitting with this talk, am I?  Ha!  She is learning more and more words each week and has loads of personality to spare.  When she’s around people, she waves and says, “Hi” to everyone.  If they don’t pay attention or don’t wave back, she leans in and waves harder.  She will NOT be ignored.  You go, Bugsy!  After a super cute 4-wheeling play time she had with her friend, Grant, I asked Mary (Grant’s mom) if it was totally unacceptable to arrange a marriage for them.  Ha!  In all seriousness, Grant and Ellie have taught their mommies so much and we look forward to many years of them playing together.  There are many other families that are in the thick of this with kiddos close to their ages, too… we seriously need to get play groups started.  All in good time, I’m sure.

If you didn’t already see Brandon’s post on this last week, we’ll need your prayers on Wednesday morning as we head to Columbus to speak in front of the Ohio House of Representatives on H.B. 332.  I had trouble reading the letter I wrote to Brandon, so I’m not sure how I’m going to keep it together in front of strangers.  Yes, I’m emotional… I’m well aware of this.  Anyhow – if you wanted a peek at the letter I’ll be reading to them, I have it attached below.

If that’s not enough excitement for us this week, Ellie will be heading back to the OR on Friday for surgery #14.  She’s having her lingual tonsil removed (until a few months ago I had no idea what a lingual tonsil was) and possibly part of the base of her tongue.  Gross, I know.  But they need to assess how much has to come out to allow her to breath during sleep.  Right now, her airway is much better than in was six months ago.  Removing her tonsils and adenoids made a big difference, but when she’s sleeping, her tongue still falls back and occludes her airway.  Let’s see what this next surgery reveals.  Are we on our way to finally having a Bandaids for Bugsy celebration?  I hope so.  We won’t know until she heals from surgery – it’ll be another two months or so before we can think about that. 

So on Wednesday, please pray that the Ohio House hears our story and votes for this anti-discrimination bill.  Organ transplant waitlists shouldn’t be denying people based on disabilities.  And on Friday, send more love and prayers our way as we again head into the OR.  And one more very important request:  we got a letter last week saying that Ellie’s pulmonologist passed away suddenly.  We’re heartbroken.  He was a wonderful man with a passion for helping children.  He actually had a trach himself when he was ill as a child and his experiences lead him to his profession.  He was a gentle, kind man who was calm and encouraging even in the midst of the craziest appointments.  Dr. Cohn’s family and co-workers have been heavy on my heart – can you join me in prayers for them as well?  I know that Team Ellie Bug specializes in prayer… I know our prayers are heard.  I know they’re powerful.  THANK YOU!

And of course, thank you to all of you who came out to support us at Walk Your Socks Off on Saturday.  We had a beautiful day and a great turn out.  We’re thankful for the opportunity to network with those in our community and to advance opportunities in our area for children and adults with Down syndrome.  We couldn’t do it without your support.  You’ll get a nice break from my constant posts promoting this event.  Come spring, we’re planning a craft beer & food truck rally in conjunction with a cornhole tournament.  Get excited about that, y’all!!

Until next time… much love from the Ward household.  Thank you for following along.  Please oblige our prayer requests above, and for the love of Pete, go out and spread some kindness today!  Have a wonderful week.

See photos below and my letter to the House.

Entertaining Bug, but with a back that had had enough.  

Thank you for being my muscle, hun.

Ellie and Gia at Walk Your Socks Off

 Being silly at Lance's race

Building the picnic table for the WYSO raffle.  Thanks, B!

Next project:  a matching one for me!!

My letter for H.B. 332

This is my letter that I wrote as our testimonial for House Bill 332:

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October 9, 2017

Chair Huffman, Vice-Chair Gavarone, Ranking Member Antonio, and Members of the Health Committee:

Thank you for allowing me to provide sponsor testimony on House Bill 332, which would ensure that individuals with disabilities will not be banned from an organ transplant waitlist solely based on their disability.

I was approached by Courtney Hansen after hearing of the proposal of Ohio House Bill 332 and wanted to share our story and put a face with the impact of this bill.  We found out that our unborn child would have Down syndrome in the spring of 2014.  Suddenly, the hopes and dreams I had for my child came crashing down around me.  I hadn’t had much interaction with anyone with Down syndrome in my personal life and honestly didn’t see past that diagnosis at all.  A month later, we found out that our daughter, Ellie, also had a severe heart defect that would require at least one open heart surgery to repair.  I knew from the day of our diagnosis that I’d have to become an advocate for our child – I had no idea that I would have to advocate to show the world that her life was worth living.

Ellie arrived that September and was out to show the world that impossible was nothing.  She was closely monitored from day one by her pediatrician and cardiologist.  When Ellie was just two weeks old, she went into heart failure.  At one month old, she was admitted for failure to thrive and congestive heart failure.  Her battle had begun – as did ours.  At two months old, we found out that Ellie’s heart defects were more complex than we’d imagined and we tossed around the idea of three surgeries now and a possible heart transplant in her future.  The next month brought a trach and g tube, several more tests, and a heart cath.  By Christmas, Ellie was spending her days in the Cardiac ICU and was only awake for a few hours each day.  She was in the depths of heart failure.  We prayed over her every night, begging her to be here in the morning.  She’d get another pep talk each morning, begging her to power through so that Daddy could see her when he came back after work.  Every day was spent fighting for her – making sure that there was a future for our daughter.

She was scheduled for her first open heart surgery on December 31st.  On the 28th, I came into a meeting with her surgeon prepared with notes and questions and a plan.  He told me that she was extraordinary, but in the worst ways.  Her little body likely wouldn’t make it out of the OR.  His words were, “the risks here are steep – the chance of mortality is quite high for her”.  He explained the surgery and what he’d be doing.  He’d be placing a band around her pulmonary arteries to try to prevent permanent damage to her lungs.  He wouldn’t be able to do more right now because of the risks revealed in her heart cath.  I looked down at my list of questions… none of which were relevant anymore.  I asked about future surgeries, he said that unless this first surgery was wildly successful, which was doubtful, he wouldn’t be able to do step 2 or step 3 in her repair.  I said, “Okay, then she can have a transplant.”

“No,” he said, “she wouldn’t be eligible for a transplant, because she has Down syndrome and a host of other complications.”  She would likely be sent home to live out the remainder of her short life with the broken heart she had.

The depths of my soul pooled out of me and gathered like a puddle on the floor.  How could her life not be worth saving?  How could her future not be worth exploring every option?  What in the world does having Down syndrome have to do with access to a transplant?

To his surprise, Ellie pulled through her first heart surgery like a champ.  She was given a few months of extra time.  It was now up to us to figure out a way to get Ellie the surgery that she needed to move forward – a surgery with a future and a life.  We looked into pediatric cardiothoracic programs across the country.  We had others refer us to Boston.

When we were finally discharged after four months inpatient, we went to see our cardiologist right away.  She helped us gather our files and test results and she got her foot in the door at Boston Children’s Hospital.  Ellie would undergo her second open heart surgery just two months later.  At the time of her second heart surgery, Ellie was again in the hollows of heart failure – ventilator dependent, fed strictly by her g tube, and spending her days sleeping and sweating.  The surgeon went in and used part of her pericardium (the sack around her heart) to build a septum in her heart and construct a mitral and tricuspid valve.  He removed her PA band.  In six hours, our daughter had a whole heart.  She came through her second heart surgery and had pink little lips for the first time in her life.  Ellie didn’t end up needing a transplant, but congenital heart defects are never gone.  They can be repaired, but her heart will never be like mine.  There is always a chance that she will need additional surgeries in the future – always a chance that a transplant will again be on the table.  While we don’t have to think about a transplant today, so many of the other families we met in the hospital are looking at that option.  So many of them have been told by multiple hospitals across the country that their child was not eligible for the transplant list because of their disability.  If we have to face this again down the road, I’m counting on you to make sure that her disability will not stand in the way of her getting the treatment she deserves.

Ellie just celebrated her third birthday.  She is in preschool and loves to dance.  She’s been in fashion shows and on billboards.  She knows over 120 words in sign language and is learning more and more verbal words every day.  Her brothers adore her and we cannot imagine our lives without the joy she brings to our days. 

I’m asking you to make sure that other families have this same opportunity.  We all deserve the watch our children grow up.  We all deserve the right to equal medical care and opportunities for all treatments.  Denying a transplant to someone because their life is deemed less valuable is absolutely unacceptable.

As Courtney reminded you, six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have unanimously passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.  Let Ohio be next.

Adults and children with disabilities in need of an organ transplant should be afforded greater legal protection. Their lives are inherently worth saving. Thank you for your support of H.B. 332.

Warm Regards,

Jackie Ward

Miami Valley Down Syndrome Association

Community Engagement Coordinator

This Face

When I was pregnant with Ellie, I was so concerned that she wouldn’t look like the rest of our family.  When she was little(r), I was always a bit anxious in public because I was worried that people would see a diagnosis immediately and miss this beautiful baby.  Soon enough, that fear morphed to them seeing medical equipment instead of a child at all.  But there’s something about this that changed over time.  I used to ache for her to be viewed as typical… I was so afraid of someone labeling Ellie before they knew anything about her.  This is different now, but I’m not sure what changed, how, or when. 

I’ve heard so much chatter in the Down syndrome community in the last few months on this very topic, and I’ve been reflecting on it lately.  Today, I thank God for a diagnosis that she wears on her face.  How odd is that?  The label that I didn’t want to be so visible to the world three years ago is worn as a badge of honor today.  I’m thankful for this face that looks different than other faces, but so much like my own, at the same time.  I’m thankful for this face because it’s a face that draws other in, it’s a face that symbolizes a community of support that I never knew before.  It’s a face that others recognize, but not for the pity or sadness that I used to envision.  Yes, there are people who look at Ellie and look away, not knowing what to say.  I’ve come to terms with those looks.  But there are others who see her that relate so well.  Others that see her and are visibly filled with joy.

For example, we went to the Troy Farmer’s Market this morning to pick up raffle items for our walk next week.  As I stood there chatting with my friend, I saw an adult with Down syndrome walking down the street, very confidently, interacting with the different vendors as she went.  As we left the stand and continued down the strip of vendors, we came upon a booth selling beautiful handmade soaps, where I saw that sweet face again.  Another woman at this booth made her way around that table and said, “I just have to meet you”.  I shook her hand and she explained, “This is my daughter, Ellie, and she just came up and said, ‘Mom, there’s a little girl with Down syndrome over there and I think her name is Ellie, too’”.  What??  I then extended my hand to this twenty-five year old Ellie and spoke a bit with her.  She was sweet and kind, her momma just the same.  She had heard my boys saying Ellie's name and had to share with her mom.  The mom asked a few questions and then said, “Wait… this is a trach, right?" (pause)  "Do you know the Adams?” 

“Kenny and Connie, yes I know them.” 

“Oh… this is the Ellie I’ve been praying for.  I’m so happy to finally meet you.”

Wow!  This is the beauty of community.  This is the beauty of small town living and also the beauty of a diagnosis worn on a face.  We would have never met had her Ellie not spotted mine.  Knowing the struggles that she’d gone through, this momma has been praying for our Ellie for all of her three years of life… and I never knew.  As crazy as it sounds, this is not the first time we’ve had an encounter like this.  We’ve had several.  Thanks to this blog and its faithful readers, our story has been shared with others who have no idea who we are.  We met a family while we were out to eat once and they kindly asked questions about all three of our kids.  As soon as we introduced Ellie, they said, “Wait, is this the little girl from Adventures with Ellie?”  I have no idea what my face said in that moment, but I was pleasantly surprised that they, too, were reading about our journey and again, praying for our family. 

Since we were in Cincinnati, I started to reach out to other parents when I’d see a child with Down syndrome.  I’m sure this was incredibly awkward for them because I know I stumbled over my words at the time.  They were gracious, nonetheless.  I saw a sweet little boy in a stroller in the kitchen once and sought out his mom.  I said, “Is this your son?  Does he have Down syndrome?”  Her face was a little skeptical until I said, “My daughter… she has Down syndrome, too”.  Instant relief on both our parts.  I did this again a month or so later when I met a handsome young boy and his momma on the playground at the Ronald McDonald House… and again when we were waiting for a table at Red Robin with our boys.  I always have to throw in the caveat, “my daughter does, too”… but I’m getting better at this greeting.  As much as I didn’t want people to assume anything about Ellie from her face, I get super excited when I meet another person with Down syndrome today.  At some point, I embraced this face of hers and knew that it meant I had instant access to this new world.  A doorway that opened up to a secret garden of incredible souls who have the same trials, hardships, joy, and beauty that I see every day. 

All of that being said, I want to take some time to thank each and every one of you for following along, for praying for us, and for sharing our story.  I have so many other families from all over that I follow because someone shared their journey.  We’re thankful for the community we have, but also for the vast virtual community we’ve established, too.  And in case you don’t already, I give you full permission to use Ellie as your gateway to this community, too.  You are granted permission (not that you ever needed it) to ask a stranger about Down syndrome and you’re allowed to use, “My granddaughter/friend/niece/cousin has Down syndrome, too… and she’s wonderful”.  There’s so much beauty in this face… and I’m thankful for her face that is the same, yet so very different from mine.  Have a wonderful weekend, y’all!

I have to run... Ellie just climbed into the dish washer.  Such is life.

This FACE!!

Ellie, Uncle Josh, and Ethan at Lance's race last weekend

Visitor lunch day at school on Friday.  Lance was happy to have us and sit with this cousin, Jack

The five little boys of our family... yes, they're crazy... yes, they're all boy!

Lance, Jake, Kaleb, Noah, and Ethan

School, birthday, life... a little bit of it all

Oh, goodness.  I’m just throwing it out there that from now on, we’re going to plan our philanthropic adventures for the end of the school year and honor Ellie’s heartiversary instead of her birthday.  What were we thinking?  Or maybe we’ll just space things out throughout the year.  Ha!  Well, actually, we got delayed on sending things to Boston for her heartiversary, so we decided to lump them in with her birthday outreach.  Silly us.  So we made the trek down to Cincy while we were in the midst of getting ready for a holiday weekend and camping, getting ready for her birthday, bringing gifts down to Cincy, sending gifts off to Boston, making a meal for the Cincy RMH, collecting a wheelbarrow full of pop tabs, and getting letters out to her medical team thanking them that we get to have another birthday for our bug.  I seriously overshot that a bit.  We got it done, though.  Remind me next spring to spread this all out a little better, though, will ya?

Oh yeah, and four of our five family members started school the week before all of the above shenanigans.  This is exciting stuff, though.  We have literally been working with our care team for almost a year making sure that things were in place and ready for us to transition Ellie into preschool.  I’ve been excited about this for several reasons, but mostly because for the first time, Ellie gets a chance to just be a kid for 2.5 hours a day, four days a week.  We pushed back on nursing hours to make sure that she’d go to school without the 1:1 attention she’s always gotten.  Don’t get me wrong, we love the fact that she’s had 1:1 care from the time we brought her home with a trach, but now that she’s pretty stable, I think it’s safe to have a nurse just down the hall instead of sitting with her through her day.  I want her to interact with other classmates to get what she wants.  I want her to interact with her teacher and para and learn to do the classroom routine just as everyone else does.  Is this a little reckless?  Maybe.  But dang it, I feel like we need to push out of the safety zone to socialize Ellie in a way that is best for her overall development.  She adores her nurses.  For anyone that’s watched her play with them and love on them – it’s amazing.  There are times when she reaches out for her nurse over me (which, yes, breaks my heart).  But now that she’s preschool age, she needs to start reaching out to other kids, too. 

I was pumped to get this rolling – until I made the drive to her open house two days before school started.  We were about half-way to school and I started to panic.  The immense anxiety started welling up in my eyes and burning down my cheeks.  I had the three kiddos behind me, so I tried to have a silent meltdown.  We met Brandon at the school and our nurse came, too.  As B came up to my window, he could see that I was freaking out and said, “breathe Jackie… just breathe… I’ll handle it”.  Thank God for that man.  I was hoping I’d pull it together before we entered the school, but I was still shaky.  When we entered her classroom and saw ten staff members there to go over her care with us, I lost it again.  Dang it.  I try not to do this in front of others.  Fortunately, I can count on one hand the number of panic attacks I’ve had where I’m completely useless – but this was one.  I can’t imagine living with that daily.  We made it through open house and continued through our super busy afternoon (Ellie’s open house, Kaleb’s open house, a few hours to wrap up my work day, closing on an investment property, then Lance’s open house in Anna).  We had one day left of summer, then back to school for the kiddos.

The boys left early on that Wednesday morning and Ellie boarded her big yellow bus around noon.  She was happy about it, signed “ready”, and then waved goodbye to me.  I sobbed when that bus left our driveway.  I felt like there was so much about her that we know (meaning B and I and her home health nurses), but communicating all of that to others and trusting that she’ll be fine away from you is really hard.  Fortunately, her team at school knew I’d be having a hard day and really went above and beyond to make it all better.  Her OT sent me a message to let me know things were going great.  Her teacher sent me a message and a photo of her playing, and her school nurse sent me a message to update on how care went and that she had a great first day.  Ahhhh… can I tell you for the thousandth time that I love Shelby Hills?  On top of this, my tribe of other moms who have been or are in the same boat also reached out.  I honestly don’t know where I’d be without these moms – you know who you are J.  You make this crazy lady feel normalish even on my worst days. 

Ellie did have a great first day of school and I unloaded her from the bus at 3:30.  She has already grown so much in the first few weeks of school – I know that we made the right decision sending her this year.  I know that she’s adjusting well, even though she has a hard time staying in line and likes to plop herself down in the middle of the hallway sometimes.  I then went to pick up Lance, who loved his first day, but had a hard time listening.  He’s had much better days since the first one.  I’m thankful for his teacher that reaches out, too.  Finally, I went to get Kaleb.  This is his first year being gone all day.  He gets dropped off at daycare before 8am, then goes to preschool in the afternoon, and is picked back up around 4pm.  When I picked him up on that first day, he was on the playground with the other daycare kids.  He ran up to me and hugged me, telling me he’d had a great day.  Then as we walked towards the parking lot, he started to cry and held my leg.  I said, “What’s wrong buddy, I thought you had a good day?”  He said, “I did, Mommy, I just missed you the whole time”.  Same, sweet boy, same.

Can I share two stories with you that break my heart, but also warm it?  Now… before I start, know that our whole family is a hot mess most days… we have awful times, we have ugly times, we have messy times… but I like to focus on some of the times when my heart is broken in a good way… so here are two stories – normal days in our lives:

During the second week of school, Ellie rode the bus in and then stood in the middle of the gym and cried one day.  She was overwhelmed for whatever reason.  Kaleb was already sitting with his classmates (remember, he goes straight to preschool from daycare).  He saw her in the middle of that big gym, got up from his friends, went up to her and wrapped his big cuddly arms around her.  As he knelt there (Kaleb is almost twice the size of Ellie), he had a chat with her to calm her.  From there, she went back to her class’ spot in the gym and he rejoined his class.  There was nothing spectacular about this… but the compassion that my boys have for their sister amazes me daily.  I didn’t witness this first hand, but had three different staff members tell me the same story – with misty eyes.

The next story is a mixture of heartwarming and heartbreaking… I can’t decide how I feel about it yet. One day about two weeks ago, we experienced what we thought was going to be a pretty severe medical emergency.  For the first ten minutes or so, it involved Brandon and me relaying phone conversations between one of our nurses, poison control, the ER at Children’s, and the cardiologist on call.  My voice cracked constantly while I was on the phone with the ER, with Brandon, and with the cardiologist.  The boys and I were leaving a store when it all began.  Those monsters loaded into the car quietly and buckled in.  I sped home, on the phone the entire time.  They knew the drill.  Fortunately, we did not have an emergency on our hands that day, Ellie was NOT given ten times her dose of beta blockers… and just before I pulled into our driveway, I could finally breathe.  Sensing my relief, I heard a little voice from the backseat say, “Are you okay, Mommy?”

“Yes, honey, I’m okay.”

“But… is Ellie okay?”  They both asked.  I felt those hot tears again.

Ugh.  Those little boys sat there quietly, knowing all too well what a real emergency looked like and knowing that this certainly was one of those days.  They shouldn’t have to know this.  They shouldn’t have to sit quietly and overhear their mom talk to the cardiologist about how much time they have to get to the hospital and if it’s better to go to the local one and have their sister sent by squad to children’s just in case they need intervention meds right away.  Thank you, Jesus, that my baby girl was okay that day and that her brothers could come home and play with her that night.  But for real… the heartbreak I feel as I look back at this night isn’t about me, it isn’t about our nurse or about Ellie.  It’s about her big brothers who are madly in love with their little sister and have had to sit quietly far too many times listening to me spitting medical jargon – listening as I’m sure they’re planning a trip to grandma & grandpa’s in their minds… not knowing what the heck was going on with their sister.  This life may run me ragged some days, but my prayer is that these little boys are able to come through this unscathed.  This is the only life they’ve really known… this has been their reality for as long as they can remember.  They’ve certainly had to grow up faster than most kids their age and they give us trouble just as much as any other child their age, too… but the baggage that they carry, the compassion they’ve developed… I hope these are things that impact them in the most positive ways in the future.

Those are my hopes.  Those are the things that weigh on my heart… and also brighten my darker days.  We’re doing this – for whatever that’s worth.  We’re off… we’re rolling… we’re jumping into new projects, and we’re enjoying this ride.  We’re trying our best to keep everyone healthy, and we’re humbled by the love and compassion in this wild world.  Trust me, stand behind that serving line at a Ronald McDonald House and tell me that the things of this world don’t disappear.  Thank you all for following along – even when my blog post becomes a dissertation – we love you!  To show my appreciation... here are some pics for you to enjoy.  I know, worst consolation prize ever.  But it's all I've got for ya.  

Looking cute - ready for school

 Brunch at the RMH

 46.3 pounds of pop tabs - whoa!

 Eating a yummy cupcake on her birthday.  This is the 1st birthday she's had where she was able to eat cake - what a delicious milestone.

 Mookie the kayak extraordinaire 

 The moon was so pretty at the bus stop this day

Not my safest parenting decision... but they had fun!

Wings Like Hers

This blog has been a source of therapy for me for almost three years now.  It's been the place where I can dump my frustrations and let them soar away on the prayers of those who read it.  It's been my outlet and also my way of sharing the joy our family has experienced through this.  Y'all get the scoop on God's mercies in our lives and certainly His miracles, too.

There was a day, though, when the thought of posting to this blog forever changed something in my soul.  We were in Boston and preparing for Ellie's second heart surgery.  Ellie was a very, very sick little girl at that time.  We struggled watching her battle each day, gripped in the depths of heart failure.  Her lungs were too heavy for her to breathe without constant vent support.  Even with the vent and several liters of oxygen, her oxygen saturation was barely above 70%.  She was blue and slept most of her days... she was exhausted and sweating even in a chilly room.  This was a new low for us.  Handing our child over in such bad shape (even when the surgeon had such a positive outlook) took its toll on me.  I found myself lying awake, thinking about the possibilities ahead of us.  The night before surgery, I prepared myself for two different blog posts.  One post involved our little caterpillar rising up with beautiful butterfly wings.  The other - angel wings.  To admit this today brings me to tears.  I hate that I had to think of a way to tell the world that our little girl didn't make it... but I had to prepare my heart for that because we knew it was a very real risk we were taking.  That part of my heart never really mended.  And I'd like to think there is a purpose in that brokenness.

I know I've said this before, but I'm adding to it today.  Ellie's first year was strictly survival.  We focused each day on the choices that had to be made to get her through to the next day.  There were many nights when we'd pray over her, begging her to "be here" in the morning.  And each morning, she'd get another pep talk to just make it through this day.  We didn't have the capacity to really FEEL any of it at the time.  We wept, but the heaviness of it all still wasn't there.  After her first birthday, I spent many months feeling all of it.  So her second year was spent living through flashbacks of all that the first year brought and finally feeling the crushing weight of it.  This process was awful, but necessary.  We were able to grieve for what had happened, but this brought with it bouts of depression and paralyzing anxiety.  Once through the worst of that, we've been spending her third year of life trying to decide what to DO with all of this.

We have this experience that's left its scars, but certainly was full of joy and stories of overcoming obstacle after obstacle and living with a real life miracle that we get to appreciate every day.  Not everyone gets an opportunity like this.  But again, what do we do with it?  Well, over the past six or eight months, I've been struggling with how this manifests in our lives as we move forward.  I think we're being called to reach out to others that we share this unique experience with.  We need to offer them hope.  We need to offer them light and encouragement.  We need to let them know that they are not alone and that all of the things they are feeling are normal.  We need a way to communicate our love and support to other parents who are in the middle of their nightmares.

One of the first things I did to embark on this was to sit with a friend of mine as her daughter underwent open heart surgery.  She didn't know I was coming, I wanted to stand in the gap for her just as a friend of ours in Cincy sat with us during Ellie's first heart surgery.  (Looking back, I probably should have told her... warned her that I'd be barging in on such a heavy day.)  As I drove down to Cincy, I had a small panic attack.  Tears poured from my eyes and my body literally shook.  Anxiety was eating me alive.  I called Brandon when I was about half way there sobbing into the phone, "What was I thinking?  I am not going to be any help to them today.  I can't face that waiting room again."  As I turned that familiar corner towards the hospital, I was still shaking.  "Get a hold of yourself, Jackie," I said.  By the time I made it up to B3, the surgical waiting area, I wasn't crying anymore.  I waited around for a bit, thankful that the family I was going to wait with didn't have to wait in the private room we had, at least.  I sat for a while waiting to see them before texting my friend.  She said they were the longest surgery of the day and were given the private room.  CRAP!  Seriously?  That room?  So I went back into the room that held so many horrible feelings for me, put a smile on my face, and hugged my friend as she waited for her sweet girl to come out of surgery.  I didn't mention any of my own battle to her... the last thing she needed was someone to fall apart on her that day.  This day was about her family and her daughter... not the nightmares I still held on to from mine.  Surgery went beautifully for her little girl and I left at the end of that day feeling... refreshed.

I had gone for her, of course, and I had no idea that I was still battling these demons deep down. I had no idea it was going to be so hard, but spending the day with that family helped me, too, and that was an unintended benefit of my trip.  I came home happy for them and with much less baggage.  This solidified my plan to reach out.  I needed this just as much as the families I hope to help.

Again, what does this look like?  I'm not 100% sure.  But for Ellie's first heartiversary, we bought her a crocheted heart plushie with stitches and a band-aid on it.  She loves it and it's a sweet reminder of how beautiful her mended little heart is now.  We'll start there.  We have some more of these on order and plan to make care packages for families in the CICU in Cincy and Boston to let them know they are loved.  We're plugging away at buying things to put into these baskets/bags.  They might not be much this year, but in years to come, we hope to continually grow our outreach.  We have other things we'd like to do as well and I'm thinking of ways to put away funds to continue to do this.  Part of the plan is to do more than I think I can so that this outreach is truly felt in all aspects of our lives.  This sounds odd, I know, but I found out in November that pushing myself far outside of my comfort zone was crucial.  No matter how large or small the care package is, I want these families to know that they are not alone, they are loved, and their journey is beautiful.  What do we need from others?  Prayers.  Please say some prayers that this mission of mine will continue to grow.  I know this is something that my heart needs, as well.

We don't plan to do a fund raising drive for this really, just navigate it as it flows and see what the future holds.  I just set up a FB page for it, appropriately named Wings Like Hers.  This will give us a space to keep you all updated on how things are going and help keep us accountable to this mission when we have other things begging for our attention.
As I forecast to the future of what this looks like, I'd like to have a place (likely this Etsy store) where we can make things to sell with proceeds going towards our cause.  There are only a few things there now, not sure what we'll make for it going forward.  The butterfly image above was something that I created from a crumpled up watercolor painting that Lance made.  When I made this butterfly for Ellie, I felt like it was a good representation of the image I'd had in my head of her gaining butterfly wings.  Out of the crumbled mess that we'd been given, something beautiful emerged.  I think I'll use this as my logo for Wings Like Hers.



I think this project is something that maybe will grow with Ellie, too.  A way for her to make things in the future that can maybe contribute a little to her livelihood as well as continually give back to this community we're forever impacted by.  Again, this is me just throwing out thoughts to you... but maybe hoping that, with prayers from others, we can launch this outreach in 2017 and maybe grow it in future years to reach more than just Cincy and Boston.  Who knows what it will look like down the road?  This is something that's been heavy on my heart for a while now, and something I feel vulnerable about sharing.  But this is my passion.  It is my love.  It is my mission.  Please pray that the fire inside of me continues to grow and that I'll find the right pieces to put together to make this project something that blows my mind and warms the broken hearts of so many others.  For a while, I've had the following quote on my desk: "Set a goal so big that you can't achieve it until you grow into the person who can."  I'm working on that growth right now.  Thank you, sweet friends, for following along.  Thank you for your prayers and for allowing me to be vulnerable.