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Day of Hope

8/19/2018

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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The Spirit of Giving - Snow Buddies

12/18/2016

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Most people by now are in the "holiday spirit;" it is nearing the week before Christmas, and many other holidays celebrated this time of year, but the real message is easily overlooked in the hustle and bustle to make sure everything is just perfect.

Last week I posted about our elementary school's Snow Buddy program. Despite being finacially burdened and having our own personal issues with bills and the lack of enough finances to cover everything due at once, we made the decision to help this child in our local community.

#50 is a sixth grade girl...that's all we know about her other than her wishlist of items on the backside. I don't know a single thing demographic about her otherwise, and yet somehow I know everything I need to and then some from her list.

She is creative, she is a dreamer, she wants to inspire others, she wants to feel comfortable in her own skin, she is learning to be independent and yet is still just a child, she wants to be successful...and she wants to show just who she really is inside. She wants to be accepted for who she is as well, rather than having to conform to society's view of who she should be. This girl is me at 11 years old.

The two words on this list that caught my attention, tugged at my heart, and refused to let me walk past the tree without taking this snowman with me was "sewing machine." The socioeconomics of our county leave more to be desired...we fall into the poverty category ourselves, we're legally homeless, we depend on what little state assistance we receive to have groceries each month, we scrap by most weeks, we have debts in collections, the list of chaos in our lives could continue for many more pages...and yet with all those reasons for why I could have walked away and said someone else is better off and can be her Santa...my heart couldn't keep walking.

The one thing I have always told my children is that no matter how bad things are here, there is always someone else going through something worse, so even when we have nothing, we can still give to others in need. Sometimes it is just an ear to listen, a hand to help, time to spend, your special talents...those little things that really add up to being something big. Other times it is providing something tangible, a place to stay for the night, funds until payday, driving someone around for the day, providing childcare, or something else that is much bigger or more urgent.

I wanted to give this girl something so much more than a gift...I wanted to give her an opportunity, a hand-up, a message that says "I believe in you and your dreams." To show her that someone in this world not only supports her, but her talent and desire to make a change in her own life that will help her feel that she is not only worth something, but that she can achieve greatness. Instead of buying a toy, or just fulfilling the basics of clothing...we fulfilled her wishlist in a way she will never have expected.

We purchased a half-size sewing machine...that was the most expensive part, but the one thing that I can personally affirm can change the entire outlook of someone's life. It sure as heck changed mine...and I will forever be grateful for the person who purchased my first sewing machine for me 9 years ago now.

This is originally where we stopped, and then I was reminded that it wouldn't do her much good to have the machine if she had nothing to go with it. So we compiled a sewing kit with all the basic sewing tools (seam ripper, bobbins, thread, scissors, measuring tape, machine cover which the machine is inside in this picture, and a pin cushion with straight pins, etc), added in a sewing book for children, and a small pile of fabric to help get her started. The kids wanted to add in the craft items and drawing items as well so those are there too. This is the one time a year each of these children who participated in the Snow Buddy program are allowed to dream...as big as they want...and while I'm sure we did more than what was "necessary" in the eyes of many, we did what our hearts were called to do.

For us, this is what Christmas is about...and this is what matters the most. Each year we find a way to give to someone else, usually a child or a family through our church, the Salvation Army Angel Tree, or something along those lines. We don't do it to brag about how awesome we are, but rather to show our children that there is always something we can give to others...even in our worst times. And when we give in our times of struggle, we inspire others to do so as well.

That is the purpose of my thoughts tonight...which are scattered, but I want to inspire others to look for ways to help those in your own community this holiday season. There's a week until Christmas, but there are hundreds of ways you can still help. My children will be spending Christmas day this year with their father...they leave a couple days beforehand. Instead of being home and wishing they were here, we'll be making visits with families that have received gowns who are in the hospital (weather and lack of illnesses permitting). They are a part of my family, just as much as my own kiddos are.

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A look inside - WVU Children's Hospital Hem/Onc Suprise Box

12/11/2016

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West Virginia University Children's Hospital is one of our newest recipients of a hematology/oncology unit surprise box!

Their hospital was selected in honor of Matthew Rose, who was not only a gown receipient and patient at their facility, but the cousin of our former Treasurer.

Matthew "Super Matt" passed away in 2014 after a six year battle on and off again battle with cancer. He had been diagnosed with a Wilms Tumor in 2008 on his right kidney. His cancer relapsed three times. He was treated both at a hospital more local to our location, but also West Virginia University Children's Hospital.

This is Matthew, when he passed away he not only left behind his parents, but his brother Troy as well. We made Troy a Freckles that matched Matthew's gown before he passed away.

Below shows the items that were included inside the surprise box that we sent to WVU Children's Hospital.

Beads of Courage Bead Bags
Chemotherapy Bag Covers
Fabric Headbands
Reusable Face Masks
Band-Aids
Stickers

The first four items were all made from remnant fabric from gown requests and the last two are items that have been donated throughout the year just for this specific collection we do all the time.

It isn't much in comparison to what these children and teens go through, but we hope they find comfort in the little things...because not only are complete strangers thinking about them, but they're in their corner cheering them on!

We're also working on getting together our Tween & Teen Program that has been officially announced on our Facebook Page, and will be live on our website here shortly as well. This program has two sides that is recognizes the unmet needs of children in the hospital that are over the age of 10 years old, but it is also in honor and memory of another local cancer warrior her that passed away in 2012.

There will be more to come soon on that - and definitely new opportunities to help support Gracie's Gowns through this program between sewing opportunities, collection drives, and even packaging days.

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When not taking care of me - nearly killed me...

11/11/2016

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Six months ago...to the day, I made a post that I had finally finished everything I needed to take care of for the day, including my research paper on PTSD in families and siblings of children with complex medical needs and had finally taken myself to the ER to be seen.

The week before, I had surgery to fix the area of my c-section site that had opened...six years after my last baby was born. I was discharged without proper pain control, I hadn't slept much since the surgery, the amount of pain was finally to the point I couldn't take one step without wincing. I had called Monday to be seen by the surgeon, they couldn't see my until Friday...I said okay...Wednesday rolled around...and I was done, but I had to get everything taken care of first before we went.

That's was the story of my life until that day...once everything else was done, then I could take care of me and my needs. We bought huge bottles of generic OTC pain medicine in hopes to get through until my paper was done...used an ice pack for the swelling that we nicknamed Leroy, and I did everything else that needed to be done so I didn't think about the pain or discomfort and then finally, I gave in and we went to be seen.

My next mostly coherent moment was two days later...on Friday morning, being wheeled down for surgery number three, and a wound vac change performed in the OR. We sat Wednesday afternoon, evening, and night in the ER...was told that I only had a small abscess like thing going on, it would be drained and then I could go home after observation and antibiotics.

Cool...I could handle that. I was transferred for admission, put in my room, got settled...and then was told the surgeon who did my surgery the week before was on his way from home to come see me. Honestly, I didn't think much of it...and then he walked in, looked at me, looked at my stomach and said he came straight here from his house after demanding the scans be sent to him there and said if I didn't go into the OR immediately tonight, I'd be dead by morning. What we were told was an abscess was really necrosis, puss, infection and it not only was it in the surgical site, but in my bloodstream. He was confident it was impacted organs just yet, but it was in my muscle tissue as well from the looks on the CT from the ER, he was having the OR prepped and it could be 2 minute or 2 hours before I go down, but it had to happen tonight. I lost it...the blown of his words, the lack of mental preparedness, the fact I had just told the kids I'd be home tomorrow before school let out and kissed them goodnight without any concern something worse could be going on...and here he was talking to anesthesia about leaving an ICU room open because there was a high probability I was going there on a vent, with a completely open abdomen until they could safely put on the wound vac.

Fortunately, I didn't go into the ICU ever...I was stable enough, and the infection wasn't any deeper than just the top layers of fascia, so all I needed was the wound vac, and lots of heavy antibiotics that resulted in a PICC line being placed Thursday evening before the change in the OR on Friday morning.

Friday evening rolled around and I was restless, I hadn't slept in over a week...my emotions were high, my labwork was off, there was concerns I developed an anxiety disorder/PTSD that needed to be treated, and my kids were terrified to see me in such bad shape no matter how I tried to pull myself together and make things a little more home-like in the room. I lost a significant amount of weight quickly as well...it was insane. The nurse Friday night said I had to take care of myself otherwise I wasn't going to get home anytime soon, therefore I needed to sleep, but I just couldn't get there comfortably or long enough to be beneficial. We learned IV Valium was going to be my best friend for a few nights and during the day in order to help me reset, gather strength, and emotionally get in a better place as well.

I finally went home the following week with my wound vac...there was a lot of adjusting, new sleeping arrangements, the addition of home health nurses to our weekly schedule, trying to manage the pain in general, and particularly the pain from the changes. Trying to rebuild strength, eat an actual meal, wean off pain medicine...drive, function, you name it.

Of course, it happened during the summer...which honestly it wasn't terribly hot, but I could only handle being outside for maybe 15 minutes at most, and on top of that I had to be in the shade. Cogsworth (my wound vac's name), hindered me from being able to do much of anything "fun" with the kids as well, confining me to as close to the action as I could be without making me sick. I was exhausted...and there were days I tried to do more than I should have, because I wanted to be normal again. And in the moments, I realized I tried to take on so much before that I never had a moment for myself, and it almost killed me.

I limited myself to one work related task a day that didn't involve lengthy period of standing, bending, or putting strain on my healing surgery site.

It made things interesting to say the least, it was tough...and it was literally retraining my brain to understand I can physically only do so much. The more I tried to do, the more I hurt...and yes, I knew I was making gowns take longer to be done, and disappointing families and children, but I had to take care of me first this time, otherwise...there wouldn't be anyone to make gowns at all. Over a month after having the wound vac placed, it was finally removed. There was still healing to be done, but my device was disconnected permanently and my body was to do the rest on it's own. Two months after the removal of the wound vac, my surgical site was 100% healed on the outside...and by the end of August things were physically back to a more healthy version of normal.

The point of my little account is to remind moms, dads, grandparents, and caregivers of children with complex medical needs...you have to take care of yourself too. If you don't bad things can and will happen. Maybe not right away, maybe not even for a year or so later, but eventually it will catch up to you. Something will happen and trying to recover from it will take longer than you ever believed imaginable. Yes, this sweet child needs you love, care, attention, and strength...but you cannot put out a fire from inside the house. You may not have family members near by to help, you may not have friends near by to help, but the hospital is full of resources, volunteers, and many other families that can provide support, insight, and even love on your baby while you take a nap, or get a meal that isn't from the cafeteria. Lean on them, they're in your corner...they are apart of the village taking care of your little one. It truly takes a village...even when you feel like the only column standing, there has to be at least one or two more, otherwise the building would collapse.

You cannot do this alone, or at least not effectively for very long, but it isn't because you're weak, inferior, or incapable...it is because you don't have to...and in trying to do so you're going to create a serious health risk for yourself and your family. If you need help connecting to resources, contact the Child Life Specialist, chaplains, or even social workers at the hospital...that's why they have the career they do. Reach out to other families during clinic visits or hospital stays, look for them on social media outlets...that's been the most amazing resource ever. Hell, families helped me with making my wound vac changes easier and smoother after we were home...it is a blessing in disguise.

Remember to breathe...think...and then take action, and in that care plan created for your child you need to create one for you too.

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