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Normal: Just a Setting on the Dryer

1/17/2020

I feel if there is anything I've learned over the last 9 years it's that normal is nothing more than a setting on the dryer...

Legitimately, every time you think you've found the routine that even remotely allows you to start thinking that this is what normal really is...the universe decides it's time to spice things up.

The last year and a half we've been living what I thought could be considered a "normal" life compared to prior years. Every six month appointments, the IEP at school, the just daily ins and outs of having a child with Autism, ADHD, dyslexia, sensory processing disorder, speech and cognitive delays, weight maintenance issues, developmental delays, behavioral concerns. I mean really, that's all normal for us at this point. We've lived it for so long that it is just a part of our lives we no longer question.

And yet, somehow, I still managed to find myself in the hallway of therapy clinic in tears today. A punch in the gut, with the air sucked right out of me...in the hallway, losing it, like it was day one of therapy evaluations all over again.

We had a great year and a half away from the constant appointments...for seven years straight we had weekly therapies inside and outside of school. For a eighteen months we forgot about it all, except the little nagging voice that said, eventually you'll be back. Not a matter of if, all a matter of when. We knew it, we were told to plan for it. I had the date sitting on my calendar for a month now...we knew he would automatically qualify, and we wouldn't even have to appeal the decision with his insurance either. It was just a formality.

And yet, it still felt awful. In fact, probably even more awful than day one...it feels like failure and defeat. Like we were good enough to keep him out of therapy, that somewhere down the line we messed up. Sitting in the evaluation room across the hall from a TV with the Xbox hooked up we fund-raised and donated money towards buying for the clinic as a discharge celebration.

We were excited to know it was being used and has been a huge benefit to the clinic, but it hurt to even look at it. That in your face realization that this part of life shouldn't have to be this way, that this isn't normal, that life in and of itself is nothing short of a roller coaster of highs and lows...and here we were somewhere in the middle of that transition.

No clue whether it is the upwards climb, or the downward slope...but here we are along for the ride yet again. Sitting in my van, screaming at the steering wheel because I was just so frustrated and angry over the cards our kid has been dealt again...wondering when in the world will he ever truly catch a break, or is this all going to be just his version of normal.

I walked in to discuss his evaluation, and there he was playing with the same box of Army men he always did at the end of sessions...delicately setting up each piece exactly where he wanted it, which of course meant he ran out of time to actually play with it by the time we were done talking, but nonetheless setting it up like he always had.

It's almost as if we had never left...the setting on the dryer never actually changed, only what we have been putting in it, and here we are changing the load once again.

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You Can't Get It - Until You're in It

5/18/2019

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Photo Credit: Stephanie McFarland Photography

In the earliest memories I can recall, other adults would tell my parents that I was considerably wiser than my years, that I was more mature and grown-up compared to my peers, that I could find the deeper meaning in literary pieces when others could not.

I don't remember either of my parents bragging about, but I do recall on almost every occasion my dad saying, "Well, she didn't have much of a choice but to grow-up at a young age." While he is not entirely incorrect, I do believe some people are inherently intuitive. These people experience considerable trauma throughout the years and it enhances their ability to simply get it when others cannot.

When I started Gracie's Gowns, I not only had the ability to understand all the medical terminology, procedures, medications, equipment and more because I was a volunteer EMS provider for a decade of my life, but I understood the emotional side of the medical field. It was silly of me to think that experience would be what hit it all home, because that didn't happen for several years. In 2013, my son was officially diagnosed on the Autism Spectrum, now I added being a parent to a special needs child to my experience...but while I felt more connected to the families we serve, there was still a huge mountain between me and them. I have never once believed that the mission of Gracie's Gowns was pointless, or that an impact was not being made...because I saw it every day. The early mornings, late nights, and countless number of hours poured into my organization was not in vain by any means, but I simply didn't get the whole picture.

The summer of 2016 brought some of the greatest news ever - that was when I received the phone call saying I personally had be selected by a committee to be one of the 2016 L'Oréal Paris Women of Worth. The next few months was a whirlwind of phone calls, newspaper articles, Facebook page likes, Twitter followers, and a surge of gown requests. It was amazing until we were sitting in our local emergency room that October. The medical director that signed off on my release as a medic walked in to give me, my fiancé (husband now), ex-husband, and my son the results of x-rays taken of his chest.

When someone says a doctor walked in with the look of something's not right, it isn't a joke...you just know they are processing how to tell you the bad news, all while holding your breath praying, and praying you're just tired and over reacting. A shadow was seen on the x-ray, right where I felt something different after he had fallen over a chair at church. The next seven weeks of our lives were turned upside down last minute doctors appointments all over the state, a continuous stream of phone calls, lab work, procedures, and referrals to specialists. Each doctor mentioned the dreaded c-word...cancer...specifically, osteosarcoma. No one could rule it out, and everyone stated a biopsy needed to be done to determine what we do next. I didn't realize it then, but this would change everything for me professionally and personally.

You see...it wasn't until we were sitting in the pediatric waiting room that I actually got it.

Giving his medical history, medications, signing yet another set of surgical consent papers, repeating his date of birth and full name to everyone who walked in the room, watching him be wheeled through the OR doors knowing everything rested on the results...kissing his forehead and letting go of his hand, praying out of desperation that he knew I loved him and hated all of this for him, and that I was sorry.

Watching the clock...and the moment our last name was called and my heart jumped to my throat when his surgeon came through the doors...he didn't have any readable expressions on his face. I can't even remember all of what he said anymore, because after he said David was okay, and that pathology's quick read determined it wasn't cancer, but rather a fibrous dysplasia, I was so relieved all I wanted to do was cry as I held him...that didn't come for another hour or so, but I'll never forget seeing him in the PACU, waiting for him to wake-up on his own.

I tell people all the time, you don't get it until you're in it...and it's the truth. I handle the Facebook page for Gracie's Gowns, I publish the website, write the newsletters (which is not my strong suite by any means), and am the face of the organization, but each child...is the heart of it. I could scream at the top of my lungs why our mission is vital to children and parents around the world, but until someone has walked through such a situation with their own child...they won't actually get it. We can pull at heartstrings all day long, we can share testimonials and photos, but it just isn't the same. It's like a special club that everyone knows exists, but no one wants to join.

We're in it, and we get it...and while it sucks, it's become apart of who we are...and I wouldn't trade it for anything in the world.

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Push Back...and do so Fiercely!

3/14/2019

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I am no stranger to advocating for my children...especially within the educational system. I am not scared of raising my voice when necessary, of shedding tears from frustration, and from even dropping several explicit words to include the f-bomb inside a school's conference room. In fact, I have been attending eligibility, and IEP meetings now for the last seven years come the fall.

Was I always confident in my requests? Absolutely not, it took a least two years worth of educational advocacy training provided free-of-charge to our family through the organization that provided my son's ABA Therapy services during the start of our special education journey.

During that time, I learned some school systems are great at thinking they know what they're doing, others put a great plan in place on paper and can't seem to follow through with it, and then some want to do the very best they can with the limited resources they have and are not purposely out to sabotage your child...but will do the bare minimum they you let them get away with. Last year, we put a nix to all that nonsense and finally changes are being made...because we knew that the upcoming eligibility testing would show the exact concerns I had been raising, and now there was no choice but to address them in the educational setting. This we deemed as better late than never, and while not the point of this post, it sets the stage for what today held.

Middle school...it's rough. Not only are the pre-adolescent hormones enough to drive anyway crazy, add in the fast-paced educational setting, a new school with multiple teachers, and everything else that changes in the tween years - it's harder to receive educational support from the school, especially if it wasn't established in elementary school. In fact, it's even harder when the child you are sitting in a meeting about is overall doing fine inside the new academic setting. Discussing a 504 was something new for me, as we didn't even discuss one with our son diagnosed with autism, we knew and the school knew that wasn't going to be an option for him. And our school today was very prepared to tell me that since October my child was still doing fine and expected me to say "okay, great we don't need to put a plan in place for her."

Instead...they received:

* Why should we settle for just fine, when she could be doing great with the right supports in place?
* Why should I tell her "you're struggling, but not enough for someone to help you just yet?"
* She has a qualifying diagnosis and a working memory score on an independent psych. eval that shows academics are at risk.
* So what she knows how to take a test, it doesn't mean she is retaining the material and able to access it when necessary, just that she can use her astronomically high critical thinking skills (over 200).
* If her test scores are so high, why is her overall grade considerably lower - insert impaired working memory skills again.
* She cannot be refused a 504 based on her test scores - she is eligible based on diagnosis itself, and she needs supports in place, nothing crazy, but just enough to help her truly succeed in school.

And I bet you can guess how well it was received...the special education coordinator was not thrilled, and under-prepared for it...to the point, her student file was not even brought to the meeting. Why you ask? Because they weren't prepared to need it, and only did when they had to copy down verbatim the exact diagnosis from the independent psych evaluation we had done. The school was not prepared to receive push back, much less that amount an intensity of push back over each statement presented. I may not know everything there is to know about the special education system, but I know enough and can access enough information to make a case.

YOU CAN TOO - be the squeaky wheel! I added a couple links on 504 for children with ADD and ADHD that can help you advocated for your own child. Advocate...fight...and push back so fiercely they realize you are not a parent to be fooled or lied too. Why should our children have to be near failing as the school wanted to tell me, before they offer supports in place? How hard is it to factor in some of these things? This link lists some of the common and helpful accommodations available to students with ADD and ADHD. If you read through them at the bottom, it is not asking the school system to move the Cascade Mountains to the most southern tip of Florida because a parent wants their child to have the beach and the snowy mountains within close proximity to each other. These accommodations are not cookie cutter lists on paper either - they are tailored to your child and their needs. If your child doesn't need access to an oral exam, great...it doesn't go in their 504, but if they could benefit from small group testing in a different location away from the distractions of a large class, then that goes in.

www.wrightslaw.com is one of the best resources for special education concerns, bookmark it should you or someone you know ever need support or guidance...and remember, do not give up. Our children are worth so much more than someone else's misunderstanding of who they are on paper.

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Day of Hope

8/19/2018

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Days like today are bittersweet, we had a laid-back Sunday, nothing incredibly pressing to take care of (other than a graduate project I'm still not done with that's due Friday), a little grocery shopping, some cleaning, a few added errands, and deciding we need to redo the shelves in the one kitchen cabinet because a canned item busted at some point and molded...gross...I know, but we never really used anything on that shelf, and so it happens, but anyway. We picked up and dropped off the littles as our usual routine, and throughout the day I've looked on Facebook and then decided to look at my memories to see this photo...

And then comes the bitterness, resentment, anger, self-hate, doubt, jealousy, and well just about every negative emotion one can feel. It was tearing me apart. My Nessa, the little girl that only lived and breathed inside me. The little girl I didn't know existed until she died. The child that made me a mother for the very first time. I wish I could say she was beautiful, that I remember every bit of her that night...but I can't. I was alone, scared, frustrated, destroyed, and wanted to run away from it all...and I did for over a decade, because I never believed life would bring me back to her father (who is now my husband), and would it even matter to him...when it was such a part of the distant past. Tonight, on this Day of Hope - I share my hopes for you, our sweet friends and family navigating the waters of grief.

I hope you know that you are not alone.
I hope you know that it is not your fault - bad things happen to everyone, death does not discriminate, it does not show mercy...stop wondering the what ifs, and look for the what nows.
I hope you find meaning out of this tragedy...not today, probably not even tomorrow, or a year from now, but when the time is right.
I hope you hold onto the happiest of memories by sharing them with others.
There will be days where you won't want to get out of bed - I hope someone makes a surprise visit or calls to check on you.
When eating is the farthest thing from your mind - I hope someone brings you a meal.
As the to-do list grows and your motivation dwindles - I hope you find the will to keep moving forward.
The days you are emotionally overwhelmed - I hope you have created a space just for you to feel those emotions in their fullness.

And lastly...I hope you have a tribe of women supporting you each day. If a pod of Orcas can gather together to support a grieving mother...us woman can too. The path we travel is one we must do on our own, but that does not mean others cannot walk beside us through it.

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Helping Those Who Helped Us

8/17/2018

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We made a post a few weeks ago celebrating our son's official discharge from outpatient Speech and Occupational Therapies after 8 WHOLE YEARS of weekly appointments at various facilities across the state. Of course we wanted to make a big deal out of this day, but we were a little bummed that his response was not nearly as excited as ours. You see...this is all he has ever known. His entire memory of his life involves therapy appointments. Plus, he still has these services in school, in addition to at home Cognitive Behavioral Therapy too...but he wanted to do something for the clinic and something for the kids that still have to go every week until they reach their discharge date too. So, we created a Facebook fundraiser to gather funds to purchase an Xbox 360 with the Kinect Sensor and games for the Kinect. In talking with his occupational therapist, and then seeing the cost of the items, we were actually able to collect enough funds to purchase two consoles and sensors (and all the parts and pieces), in addition to the games, as the clinic is expanding and will have additional rooms to offer. He was so excited to raise the money and be able to do something that brings something kids love to inside the therapy setting as well.

The other thing we did was collect some of my remnant fabrics, and pieces that were smaller than what we usually need for gowns, or we just have so much of for gowns and donated it to Sharing the Weight. Many years ago we received a weighted blanket from Angel Love Boxes, but like many organizations do to the overwhelming response and not enough funding, they closed their doors. He outgrew that weighted blanket a couple years ago, but we held onto it until we could either afford one or find another organization that made them at a reduced costs, which is how we found Sharing the Weight. I had forgotten I even submitted for him when an e-mail came through asking to confirm if we needed one, and that our number would be up soon to choose a pattern. I was ecstatic over this news, and he picked out this bear print! We covered the shipping costs and then paid it forward by randomly drawing a name from our Facebook post offering it up.

We sent fabric for at least 20 weighted blankets to be made for other children on their wait list. I am not sure how much they need for each size, so my fingers are crossed that more than one may come from some of the fabrics. I hope the children who receive the blankets made from these prints feel the same benefits from their blanket as David does...it is the one thing he has to have at night besides his momo.

Thank you to all our therapists at Fox Speech Therapy, UVA Children's Hospital, Spotsylvania Regional Medical Center, and Children's Hospital of Richmond (in Fredericksburg)...without each of you, this amazing little of mine would not be the young man he is becoming. Because of you we had hope, we never gave up (even on the hardest of days), we kept moving - though sometimes it was backwards, we learned how to work with him, how to help him, how to understand the world as he sees it...and were able to teach him to see himself for more than his diagnosis. I am forever in your debt.

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Birthdays with a Purpose...and Pillows!

7/16/2018

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A year ago, I met Amber...she is a creative director, philanthropist, mom, photographer, homesteader, seamstress...and just so much more!

I saw on Facebook the other day that she is having an upcoming birthday in which she will spend the time sewing. And not the guilt pleasure sewing for fun that I like to enjoy on my "me days." Instead she is doing charity sewing.

The project she has chosen to make for her birthday, are pillow loungers and they are going to children in the Utah Foster Care system...now many of you do not really know me that well to understand how this tugs at my heart, so let me add that in real quick.

We live in an area with a really tough foster care situation (and I'm for certain that is a widespread situation, not just our area), and one day it is my hopes to take the training to become a foster parent, and strictly take in teenagers. Seems really insane to some, but that is really what my heart wants to do when the timing is right (mostly, we just want our own home to dedicate a room to the teens that would come into our care).

Moving back to Amber and her birthday sewing - she was needing fabric to make pillow loungers from for the children...and I could not pass the opportunity to help her, but also share with you the tutorial she is using. Just in case you might be inspired to help your local foster care system too!

Unfortunately, I am super bogged down with Crawl'n for Gracie's Gowns this weekend, that I do not personally have the time to help sew some up for Amber. Because of that, we are sending Amber enough fabric to make 26 pillow loungers on her birthday! Here are the prints below - one is missing, because it was added once I repacked the box and had a little more space.

The tutorial being used is from Trinkets in Bloom and the direct link is:
https://www.trinketsinbloom.com/diy-pillow-lounger-with-waverly-fabric/

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A look inside: Baston Children's Cancer Center Hem/Onc Surprise Box

4/10/2017

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Baston Children's Hospital Cancer Center has treated over 2,000 children who have been since their program began. The clinic sees approximately 75 new patients every year and follows more than 800 patients annually, including new patients, patients who are on therapy or have recently completed therapy and long-term follow-up.

Our hem/onc surprise box donation was made in honor of Abby Grace, who is not only one of their patients, but one of our gown recipients as well. She was diagnosed with leukemia at two years old.

In this particular hem/onc surprise box was the following items:
(10) fabric headbands mixed in to sizes
(10) Beads of Courage bead bags
(30) Reusable Face Masks
Lots of fun Band-Aids and Stickers
(30) Chemotherapy Bag Cover

A huge thank you goes out to all our volunteers that have worked on these various items that were donated. They include Laura, Kim and Kim's mom (I promise I'll remember her name eventually), Crystal, Jennifer, Cindy, and myself.

Another HUGE thank you goes to all our donors that sent Band-Aids and stickers, and to cover the shipping costs of sending out these boxes when we have all the items together to do so.

There will be a second box coming up very soon to be sent out that just needs a few more items sewn and then we will get it on the way to another lucky hospital.

Here is an old photo of Miss. Abby Grace in her first Gracie's Gowns and a FRECKLES they adopted from the early days of our organization too! I would like to report that Abby Grace is doing phenomenal at this point in time as well. Keep it up girl - you've got this!

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Teaming Up with Handsocks!

2/24/2017

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In January on a do or do not, there is no try moment, I reached out to Casey Bunn of Handsocks to not only tell her how amazing her product was, but how I wanted to get it for our families. It wasn't a desperate plea, but I really could just see how much these mittens would benefit the families we serve on a regular basis...and just knew we needed to find a way to make it happen.

A couple days after I hit the send button, Casey called me, even more ecstatic than I was about the e-mail I sent her...and well that was the start of something pretty amazing right there. We talked about some of the kiddos that had received Handsocks that gowns have been made for, she told me all about the new designs coming out, and we even discussed life, parenting, chaos and goodness whatever else we've talked about since.

The best part was, even though I was offering to buy them somehow in our essentially no existent budget to do so...she had a way that we wouldn't have to for quite a while.

Kickstarter was the idea that Casey had...not only was she getting ready to launch the campaign for Handsocks to get the start-up funding necessary to really allow this amazing product to be seen globally, she wanted a charity to benefit from the backing of the product too.

Enter our collaboration! Since we work directly with families and individual kids, this is the perfect opportunity to not only have something awesome and practical to send with gowns, but as a product developer it makes sense to get your items into the hands of people right?! This is how we not only share Handsocks with families around the globe, but allow them to be used for a purpose well beyond the standard concept of mittens. The way it works, is that anyone can back Handsocks on Kickstarter, but if the product is not needed by the backer, when the campaign closes on March 21, 2017 there will be a survey sent out, and backers can choose to donate their Handsocks to Gracie's Gowns! Awesome right?!

As of this blog, Casey's campaign is funded, which is super exciting, because that means not only does she has the minimum funds she needs, but Gracie's Gowns will definitely be receiving Handsocks as well.

Are you excited?! There is a variety of backing levels, starting at just $2.00 to support the project. However, there are some spots still left at $8.00 that also give you a pair of Handsocks for yourself or to donate to Gracie's Gowns - that's over 50% off their retail price when they are live on Casey's website for sale again. There's only 54 of the early bird specials left on the campaign to receive a pair of Handsocks and back the project at $8.00.

Of course, I'm going to encourage folks to still back the campaign, because Casey needs the additional funding, we can use the additional Handsocks, and well...because it's just an awesome project and Casey has already become such a great supporter of our organization a well! If nothing else, visit the campaign and give it a share!

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What CHD robs from families

1/29/2017

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February is "heart month" as many refer to it. The week of February 7th through the 14th is listed as Congenital Heart Defect Awareness Week even...but yet so many people fail to understand what that means, fail to comprehend what a child with such a diagnosis goes through, and further more the constant stress, fear, anger, and heartbreak these families go through each and every day of the year.

Children with congenital heart defects are more than just cute kids "rocking their scar" once a year in a feeble attempt to attract public attention to their diagnosis. They're more than a heart with band-aids on it...they're living, breathing, miracles one heartbeat at a time.

It is a life that is not for the faint of heart. It quite literally robs families of everything they've come to know and love...including extended family and friends as statistics show that unless you're living through the battle or constantly immersed in it, you cannot even begin to fathom the complexity of maintaining consistency or routine for other children within the home, juggle medications and doctors appointments, and still remember to care for yourself. The stress level in raising a child with complex medical conditions is equal to that of combat veterans, these families live each day with post-traumatic stress disorder in a way that not even the best television show can produce. Most days, parents survive through an "auto-pilot" mode just trying to get through the day five minutes at a time...siblings are sometimes forgotten in the mix as there is just not enough energy or sanity to deal with a toddler's tantrum after spending 4 hours on the phone with an insurance company.

The dynamics of a family are turned upside down overnight, marriages suffer...even the most rock solid of marriages will still end up with some period of strife. The divorce rate is skyrocketing in families with children who have complex medical needs, some because of the financial burden, some because there just isn't enough to keep them together anymore, some because it is a necessity to provide for their children. Despite all of this...there is something much more soul-wrenching that congenital heart defects robs families of.

In the blink of an eye, congenital heart defects rob families of their children.

One minute you have a slightly fussy, nothing out of the normal baby with a congenital heart defect, who also has reflux...and within minutes of them finally calming down they're lethargic, and not breathing...just like that, they've died.

Resuscitation is next to impossible at this point, not because a family waits too long to call for emergency medical services, but because of the heart repairs, the types of shunts put in place, the already weakened heart muscles, the complexities of the more severe heart defects, and the shear fact it is always so sudden and unexpected. Their next photo isn't taken in the mirror like always with mommy, but rather his mommy holding the outfit he died in, grief stricken and alone in the mirror.

Every year 1.35 million babies are diagnosed with a congenital heart defect, and in many cases their heart defect is not diagnosed until after delivery and the baby is struggling. 25% of these babies will require invasive procedures and even open-heart surgeries in order to even stand a chance at survival. Each year 1.35 million families are given a diagnosis that their child, if lucky to survive into adulthood, will have life-long health risks and concerns. There isn't a single medication, treatment or surgery out there, despite all our gains in healthcare that will cure these children.

As a result, approximately 182,500 children worldwide will die due to complications from their congenital heart defect. That is an astounding, crushing, and disgusting number to look at. 182,500 families each year will bury their child because research isn't catching up to the pace necessary to create better medications, treatments, surgeries, or even preventative cures. Imagine if monies were funneled directly into such programs for children like they are for adults. Congress has passed legislation to fund nearly unlimited amounts of funds into studying the reproductive health and well-being of adults, but yet 4% is spent on pediatric cancer research...do you know that research for congenital heart defects receives a fifth of what pediatric cancer research receives?

Less than 1% is spent on researching the number one birth-defect related death of children worldwide and yet our attentions are more wrapped around which celebrity is dating who, or what new electronic is coming out. This is a problem, because no one cares until their child is diagnosed with something that could or will kill them.

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A Dose of Christmas perspective...

12/25/2016

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It's Christmas Day...I'm as emotional as they come because even though I've split the holiday for many years...this is the first year my littles aren't with me at all on Christmas. It is rough, it is heartbreaking...I've been happy, sad, and bitter all within the last hour. However, I received my dose of perspective going back through this precious photos I took yesterday at UVA while meeting Jaxson, Chelsie, and her parents, and then visiting the Roadruck-Tolentino crew catching up on my favorite Iron Man Maddox...

Nursing staff and families desperately try to make the hospital feel more like home during the holidays. From stockings to Christmas trees, presents to holiday socks, even reindeer antler headbands and Santa suit bibs were all seen throughout the NICU and PICU at UVA. All in hopes to just bring a wee bit of cheer to the hospital setting. They all do their best to make the best of every situation, but there is still that hint of despair that things should not be this way lingering throughout the halls...despite the smiling faces and special visits from various people trying to lightening the mood.

There are not a lot of visitors up at the hospital, but there is one thing you will find and it is families...parents, grandparents, and siblings alike will all cram around the tiniest of beds surrounded by medical equipment, trying to not trip, pull, or bump against anything for fear it may be problematic.

Nursing staff do their best to allow families "their special time" with the child they're visiting, but there is always a hustle and bustle throughout the units, as medications have to be given, settings are constantly being changed, and even just the stimulation of having visitors can be too much for these little ones to handle...here is where the perspective starts...a mother praying her newborn baby will finally open his eyes and the first person he sees wil be her, rather than a stranger. A nurse that sees this sweet child in an uncomfortable state, but also is begging for his eyes to open and see his mother for the first time as well...rather than having to give him medications that will cause him to fall back asleep and allow his body the rest it needs to heal.

My children may not be here with me, but they are not in the hospital either...I'm not begging God to hold them for the first time still...I not having to witness them fight every second of their life against a diagnosis that says, the odds are stacked against you.

I've been in this brand of shoes, just a different model...I've been the NICU mom twice waiting to know what the next day held...but here...it is minute-by-minute. I never had to stand next to their isolette staring at a piece of green plastic, praying to constantly see their little heart continue to beat on its own. The very definition of helplessness as a parent is defined by this picture...but so is the very definition of hope.

I was bitter until I remembered the frustration, the heartache of having to split a family apart during life-long hospital admissions. Families that have spent their child's entire life living in two separate places. Constantly trying to find a way to be together...but yet knowing the quality of life for siblings while stuck in a hospital or hotel room every weekend to see their sibling isn't fair to anyone either.

Many of these families would never ask for a dime of help from anyone, even though the out-of-pocket costs are astronomical between travel and lodging costs, in addition to just real life bills and responsibilities...they don't see these costs as a burden, they see them as a necessity. Trying to keep their family together, handling not only the complex medical care decisions for one child, the exhaustion of working full-time and raising two other children at home, and then add the stress of trying to maintain normalcy...but knowing that this is normal for us...it is a completely different dimension of life. This daily struggle, is something no one should have to go through, but families do this every day of the year...the struggle is only intensified over the holidays...and comes with all of the same emotions, but a million times stronger.

So while I won't invalidate the feelings I had earlier today...I will remember these sweet families, and the immense amount of emotions they're experiencing right now. The families who are hanging stockings and placing ornaments on their tree for children who are not home...and the ones decorating gravesites for children who left this world far too soon.

The holidays are always so full of excitement and joy...but they are also filled with those darker emotions that seem so unfair and cruel to have to feel during such a magical time. The one thing each of these families have is hope...hope that a second opinion will show there is still more that can be done, hope that tomorrow will be the day the swelling decreases enough to close a chest, hope that funding will come through to ease financial strains, hope that their child will finally be closer to home...and hope that one day their normal includes everyone under one roof together.

It is in these reflections...the true nature of what having a child born with complex medical needs is revealed, the face of these diagnoses is truly seen for what they are. Sure, there are all the happy stories of Santa visits and celebrities giving out gifts, but the other side...the family side needs to be seen as well. So while you may be like me right now, sappy and emotional over the not-so-great part of your holiday...remember there are other families in the same brand of shoes, just a different model too. They feel your emotions as well...but if they can still have hope, then so can you.

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