Blog Posts

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

12/11/2016

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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Open Letter - to the Triage Nurse Who Called Me "One of Those Moms"

10/14/2016

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I am sure you're expecting me to tell you that I am highly disappointed in how you treated me, my concerns for my son's accident, and what I believed his injury sustained was...but in reality I'm writing this letter to tell you thank you.

When you called me "one of those moms," you meant it in a demeaning fashion...yes, I know I am not the easiest parent to handle because I'm educated enough medically to get myself in trouble...and yes, I know I was insistent about something you felt was silly and unnecessary on a busy night in the ER for you and your coworkers...but honestly, you did nothing to hurt my feelings. In fact you only proved that my mother's intuition, and that the third of my life I dedicated to emergency medical services wasn't wasted.

See, what you didn't find out, because you were busy and not able to follow-up with us is that x-ray I demanded be done didn't show a break in my son's rib at all, it didn't match the amount of pain he was in, but it did in fact show something was wrong...there was a growth in the spot where I felt something wrong on his rib...the spot he was complaining of pain in it.

Because of your attitude in describing my own to the physician on that night, we caught something before it could become anything bigger, or more severe...and for that I thank you. We have spent the last five weeks going through additional testing, evaluations, and imaging to figure out what this growth is...and that little hand you see there...we just had a biopsy done to confirm or deny the possible diagnoses involved. I'm writing to you not only as a medical provider, but as a mother...a mother that was prepared for anything thrown my way in the medical field, until seeing him post-surgery with an oral airway still in place...and in that moment I held onto his hand, and his piggie...bawling my eyes out waiting for him to wake-up, and knowing that while we were pretty certain this wasn't something too serious...it would still be at least a week before we'd know for sure.

Without me being demanding, without me saying we needed to have an x-ray done to confirm whether or not his rib was actually broken (which the CT Scan we had done showed it actually had been broken as well), we'd have never know something was growing on his rib in the first place. I want you to know that while I may have been irritated with the way you spoke to me that night, in this moment of waiting for him to wake up...my only thoughts were to thank you.

You might have thought of me as crazy...but with all this kiddo and I have been through together with his other diagnoses, I have to be his advocate...because not everyone will listen when I say something wrong or just doesn't add up, but even through your judgment of my opinion, you did listen. I know your job isn't easy, and quite honestly I don't know how you do it every day, but I want you to know that "one of those moms" believes that you're making a difference, you do matter, and that without you patients may not receive the right care they need, when they need it...you're one of the first people patients and families meet when they step foot into the ER and your instincts, knowledge, and skills play such an important role in their medical care.

Please keep listening, even in those irritating moments...you very well could and probably have already saved someone's life just by doing that.

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Kids Helping Kids - Bronze Award Service Project by Girl Scout Troop 2183

10/14/2016

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Last year I received an e-mail from Lisa asking about Gracie's Gowns and our mission and that they had been teaching this girl scout troop of eleven girls how to sew in order to complete the service project they had selected for their Bronze Award...and through that had chosen to make NICU Smocks for Gracie's Gowns.

It has been amazing getting updates throughout the last year from their home in California, seeing their project come together and over the last two days I have received their hard work first-hand. We were able to help get their project off the ground by donating to the girls some of our remnant fabrics, and have even more recently donated another box of pieces for some of their upcoming service projects too for some really awesome organizations as well. In addition, we sent each girl one of our Gracie's Gowns patches showing our appreciation. They are not authorized Girl Scout patches, but they are ones we had made for such an occasion and I'm so honored they were awarded to them and they love them as well.

Lisa has sent several batches of NICU Smocks they have made over the year, but these photos are of the ones that were presented to the committee for their award - the donations that aren't NICU Smocks themselves are from her family personally too.

We always need twill tape, and snaps gowns cannot be made without either and these ones are engraved with a variety of images as well - super cool! They also sent us some books, crayons, socks, and little turtle stuffies!

Forgive the terrible cell-phone pictures, it's just been one of those weeks where nothing wants to work right...but back to the awesome girls behind this project.

In total they made 62 large NICU Smocks, laundered them, which we will then distribute to hospitals across the country and even internationally.

The Bronze Award is the highest award that Junior Girl Scouts can earn. Earing the Girl Scout Bronze Award involves not only all the plannings behind the project itself, but then a minimum of 20 hours in building the team, going through their local community looking for idea, selecting their project (which also has to be approved first), and then completing the project itself by the required deadline. It is definietly not an easy endeavor to take on and one that not only requires the willpower, but the passion for the project in order to complete it.

Allyson, Alyssa, Arianna, Angelina, Genevieve, Isabella, Julianna, Madison, Priscilla, Zayden, and Kailey - all of us here at Gracie's Gowns are so proud of you for dedicating your time, talents, and using your award to further our cause. The babies that will be wearing these gowns will be more than honored, more than comforted, and their parents have you to thank for that! Keep on being awesome, being ambassadors, shining a light in a world full of darkness and bringing hope to those around you!

Girl Scout Troop 2183 - presenting their service project

For those interested in doing a service project for Gracie's Gowns, please send an e-mail to us about your organization and ideas to the following: jessica@graciesgowns.org

This is a sample of what our patch looks like that is handed out to the groups that participate in service projects and earn merit badges or awards. While it may not be approved for wear on a specific uniform, some have been able to wear it on a different part as a "fun badge."

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When a Gown Comes Together

10/12/2016

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Meet Kyrie - well the version of this sweet kiddo from June of this year, he was still at UVA Children's Hospital after having received his hero heart, and a second chance at life!

We met him and his mom when I visited the hospital in coordination with Kelly and Finn to bring up shark gowns to UVA for the NICU and PICU for Shark Week.

If I remember correctly (things are still a little hazy for me during that time as I was recovering myself from a month of having my wound vac), when we first took his gown up, he was still intubated. This is obviously a couple days later.

Tonight, I'm writing this post to show just how much thought, love, and emotion goes into making a gown.

This is Kyrie today working towards six months post transplant, growing, thriving, and getting stronger each day.

With that...he outgrew his gown - OH NO!!! It is such an awesome thing to follow children, what them defeat all odds, grow stronger, healthier and happier as each day goes by. It does create a little more work, but it is work that I am more than thrilled to have.

His first gown was easy to get made - he loves Olaf...ordered fabric, done. His next gown, was needed in a bit of a rush, well in a lot of a rush for life as it is right now around here...it becomes a little more complicated. Luckily, I had a few gowns that were already made and in need of a home, which we use for situations just like this. I sent pictures to Montanna and she picked out one that she liked the most, after we nailed down the right size. She picked a Dr. Seuss one - swoon, one of my favorites!

I still wanted them to feel like this gown was specially made just for them - even if it came out of the container where I keep gowns of various sizes as extras for emergencies. That lead me to searching online for Dr. Seuss themed embroidery patterns and I found this one Oh the Places You'll Go! how fitting for a heart warrior, for all of these kiddos that receive a second chance at life, that regardless of the hand dealt to them they continue to work so hard each day just to live.

Then I had to figure out the colors of the balloon and wording...this is when I found myself crying big, ugly tears because everything just came together in the right ways.

I had scraps of rainbow fabric from a gown last year (if not the year before), symbolizing the hope his family had in receiving a hero heart in his hour of need, and the hope they have had each day since. The balloon is then outlined in red and blue, the colors of the congenital heart defect awareness ribbon, and then finally the wording, and the basket are done in green. The color that symbolizes organ donation...because without that Kyrie wouldn't have the ability to go anywhere, to do anything, to grow-up and follow the dreams he has. God bless his donor family and the sacrifice they made in their darkest hour to provide another family with the ability to have many more days, weeks, and months together. You are the hero, just as much as Kyrie and his family are.

Designing gowns isn't the easiest job in the world, sometimes I'm stuck on an idea, other times it is so emotionally overwhelming because I want to create the perfect gown for each child...but it really lets my creative side flourish, my heart brighten...and it can be super fun as well.

Best of luck and love Kyrie on your upcoming G-tube surgery Tuesday!

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Making Moments Happen - UVA Breastfeeding Medicine Program

8/30/2016

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Over the last few weeks I had the wonderful opportunity to team up with Felix's mom Sara and make a special moment happen in honor of Felix and his journey at UVA...tomorrow, Sara and Patrick will be going to spend time with their son Felix who has been at UVA since the day he was born...five months ago. He was born with congenital heart defects, but also CHARGE Syndrome (Learn more about CHARGE Syndrome here). While they are spending time with Felix at the hospital they will also be delivering special care packages to the UVA Breastfeeding Medicine Program to moms of infants in the NICU and PIC that have to exclusively pump because their child is unable to latch for nursing for medical reasons.

Some of these reasons are they aren't allowed anything by mouth, so their child is fed through an NG or G-tube, they aren't able to latch for developmental or medical issues, or even for the "simpler" reasons of their baby was born way too soon and it isn't a safe or wise decision to try to breastfed at this point in time...there are many, many reasons why infants can't or don't latch in general for breastfeeding and for many moms having to exclusively pump is mentally, emotionally and physically straining...medical concerns only make the issues more complex and disheartening to deal with. Sara had to exclusively pump as well with her older son Luke and so she decided to help these other moms by gifting them with something she's personally tested, approved and helped make exclusively pumping much easier.

I just had to add a sweet Felix with momma in his special gown from us too!

Simple Wishes creates a specialized bra just for pumping and this is what Sara wanted to collect and donate to mothers at UVA...so she started her mission, we set-up a Perfectly Posh Fundraiser too in order to help raise the funds to purchase 40 of them and we were able to help raise an additional $50.00 in funds to what Sara needed.

Well as fate would have it - Simple Wishes donated the last 6 bras needed to meet Sara's goal, which a huge shout out goes to them because they are $30.00/each in retail costs. We then took the funds that were raised and did something in true Gracie's Gowns style during our Facebook conversations to come up with an item to include with the pumping bras.

I had a few sets left from last year's craft show of reusable nursing pads that I donated to the cause, and was going to make more out of the more adult fabric remnants we have here, but Bamboobies stepped in and up to help support this amazing efforts and donated their awesome reusable nursing pads to Sara in addition to cream too!

I love their heart shaped design...mine are plain and round, but we still had another way to help fill these gift bags with love and something beneficial when pumping out in public, inside the hospital or really anywhere that you don't want the attention of everyone around you...

We made pumping or nursing covers - whichever you'd like to call them. We took fabrics leftover from gown requests that were more "mommy-like," fabrics that I just thought were really fun, and then turned them into a special gift to brighten the days of these mothers while they wait to bring their precious babies home for the first time. In fact, I was finishing them while sewing gowns all this weekend and yesterday as I waited for my Amazon order of d-rings to come in so I could finish them up.

Twenty-five covers were made from donated, purchased and as stated fabric we already had leftover from gown requests - what a great way to use up some of these amazing prints and bring smiles to other folks at the hospital too. This is a project that helps meet the need of mothers where they are...seeing a need, finding a way to help fulfill it and then doing it. I'm so blessed and honored to have been asked and able to help Sara with her project to not only give back to the hospital that has been caring for Felix since day one, but to honor his life and journey and to just see other parents in their struggles...then reaching out a hand to help, provide hope and say, you're not alone in this.

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Here I Am - The Reality of CHD

8/22/2016

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Facts and Introduction:
Congenital heart defects are diagnosed in 1 out of every 100 babies, making it not only the most common birth defect, but also one of the most deadly. Within the United States alone 1 in every 100 babies equals about 40,000 children born each year with a congenital heart defect. Many of which are not diagnosed until after delivery. Even in the greatest of odds, over 25% of children born with a congenital heart defect will have to have at least one intervention or invasive heart surgery to repair their congenital heart defect.

These facts are horrific, they are terrifying, they stack the odds against children and families across our globe from day one...however...the most people recognize about it is a heart shaped red and blue ribbon, or cut photo contests with children showing off their "zipper club" scars from open heart surgery. Today...we present the reality of these congenital heart defects, the ugly side of that scar...the part that instills so much fear into thousands of families each day, the part that causes mental stress and agony, the part that will hit you in the core of your being. At the same time...this is the part that shows the courage of each family, the strength of each child, the hour-by-hour wait for a child to open their eyes again, to smile, to cry...the moments that cause one to appreciate every second of their child's life because without the advances in medical technology, without the amazingly skilled hands of doctors performing complex surgeries on something the size of a walnut...their child's life would be shortened drastically, and without warning.

The images below are raw, they are emotional, they are graphic in some ways...they are real...and this is the side of congenital heart defects that isn't seen unless you're standing in the hospital room. These images are not to be copied, but you may share this blog posting in and of itself as a whole. They are the exclusive right of myself and the Williamson family.

Meet Oliver - or as he is most referred to, Oli...this is from June of this year when we took some new photographs with Nicole Ballard Photography of our local littles wearing their hospital gowns for our website.

He was diagnosed before delivery with Tetrology of Fallot w/ Pulmonary Atresia & MAPCAs; he has also been diagnosed with 22q deletion syndrome also known as DiGeorge Syndrome. He has an infectious smile, is cuddly as ever, and quite literally has everyone who meets him wrapped around their finger...especially me. Next fall this little super hero will be the ring bearer in our wedding, providing nothing crazy happens and he behaves himself in order to do so.

Fast forward to August 19, 2016 - Oli and his family we admitted to Children's Hospital of Philadelphia for what they hope will only be a week long stay (give or take) from his first open heart surgery. The night before they posted to his Facebook page the last photo of his chest without a scar...as the following morning they would walk to the doors of their personal hell, wait hours to hear the news his surgery went okay, that the surgeon was able to follow one of two plans created for him and that despite what he went through in that operating room...he was going to be okay, and in fact they would go home with their baby.

I arrived to CHOP the next afternoon...and this was the little Oli I saw, the reality of congenital heart defects, even though he isn't my baby...I was relieved to see him doing so well in comparison to others like him, but it was so heartbreaking to see and not be able to hold or even interact with the little man who has become my child in my heart. There's an eight month old baby somewhere in the room among the machines, the pumps, the monitors, the tubes, and all the wires too.

Oli was starting to run a post-surgery fever...which was to be expected according to the staff, most people and especially children will run a fever after surgery, particularly such invasive and complex ones as Oli's open heart surgery was. However, they will not medically treat a fever until it is at 105F or higher...in his case, they would give a little pain medicine, but the washcloths were used on his head and groin after they were dipped in ice-cold water in order to help bring his temperature down. He has IV's in both wrists, and even one in his foot in order to accommodate all of the medicines and fluids being given during his recovery. These included lines going straight into arteries in order to get the best assessment of his vitals and lab work.

There are even small reminders of home his blanket and stuffed animals - his Healing Helper wearing the very first hospital gown that was made for him before he was born, and even new reminders that while the hospital life isn't the greatest, it doesn't mean you can't make the best of it. This sweet Dr. Seuss blanket was quilted and donated to the hospital, more than likely by Project Linus volunteers an Oli was the recipient of it. "Oh the places you'll go..." immediately comes to mind when looking at this photo. All the places he can go because of this life-saving surgery that wasn't available 70 years ago, the things he will become because someone said these babies deserve a chance at life too, oh the things he will accomplish because he is still here, because someone said I care enough to make a difference...and that difference is going to be mending the broken hearts of children everywhere.

A few of those someones are right here...the nurse practitioner that came and checked in on her boy, listened to his lungs, his heart, checked his skin color and temperature...and just reminded mom and dad right now things are only thought about in twelve hour increments. No more, no less...if it can't be obtained in twelve hours time, it wasn't on the table for discussion just yet because he was still in a fragile state of recovery where anything could happen. In fact, the night before he decided to show off just how fast he heart could fly...and while he may have wanted such extra attention overnight, his heart needed more time to rest. Take your time Oli...you'll be moving those mountains soon enough! His wonderful nurse throughout my time there Saturday buzzed in and around, was as sweet as can be, and I swear the woman wears roller skates because she was in and out of the room like lightening and barely disrupted anyone or anything in the process - and she was in and out A LOT between drawing labs, changing medication dosages on the pumps, changing out the wet cloths, re-positioning Oli and just making sure everything was still moving in the right directions. I couldn't get my camera to focus once on her...but her hands were captured working diligently on drawing labs from his one arterial line to check blood gasses once again as the hope was come Sunday he would finally be able to be extubated and start moving those mountains in recovery in order to go back home.

Then this kept happening - his heart rate would keep climbing higher, hold steady, climb a little higher, hold steady...and at one point as inching close to 180 beats per minute again...his target heart rate was 140 beats per minute or less (within a certain perimeter). However, unlike the night before, his blood pressure and oxygen saturation remained steady which was a blessing indeed. There was some cause for concern, as his fever was increasing a little here and there as well and no one wanted his heart rate to spiral out of control...it was in this moment fear, worry, hope and love were all captured.

We've had a running theme song for Oli once this surgery was booked and really has become his war chant...it was a good luck sign before surgery and on my drives to and from played on the shuffle of my phone a total of four times alone...not to mention every time I was in the car and thinking about him, this song would come on - it is Rock You Like a Hurricane by the Scorpions. Now mind you...not the whole song, because well, he isn't allowed to date anyone without approval for starters, much less be love hungry just yet either...but it is the chorus that just struck at the right moment in a Facebook message about how Oli was going to rock this open heart surgery, "Here I am, Rocked you like a hurricane." In the moments when his heart rate was continuing to climb though, we thought to play some soothing music and see if that would help bring it down, because who doesn't love soothing music when they're upset...the song that played as much different, the words meant so much more, not only was it perfect for that moment, it was almost like divine intervention.

The song was He's my Son by Mark Schultz - I have copied the full lyrics here, because honestly the song's impact on every family in this type of situation touches their heart in so many ways. In addition to that, the song was written for a family whose child was diagnosed with leukemia...this I learned while writing this post and looking for the lyrics. Again, divine intervention in such a moment as this.

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Chorus:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

(Chorus x2)

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

During the chorus...this image was captured...in addition to the following two of where Jacqui and Andrew both had their hands. These bedside moments were the most intimate, emotionally raw, and inspirational of all. The moments where even though I was standing at the foot of his be, I'm pretty sure neither of them was even aware I was still in the room. All their focus, their thoughts, dreams, fears, and hopes were about Oli and the life they want to have as a family of five once they're back home again and reunited with his two sisters. In this moment everything stopped and all you could here was the quite hum of the machines and the song on the phone...so much was still unknown as to what was going to really happen, and so many possibilities of what could happen the mixture of emotions was the perfect recipe for chaos...and yet...here at his bedside they stood together reassuring not only Oli that it was okay, that they were right there beside him through thick and then, but reassuring each other that together they would bring their son home once again.

"You are fierce. You're a survivor.
You're a fighter through and through.
Little brave, breathe.
There's a warrior within you. "
Beau Taplin - Lest we forget

To follow Oli's journey you can visit his Facebook Page at:
https://www.facebook.com/OliversHeartJourney/

There is also a fundraiser established for the Williamson family as well - all commissions will be donated directly to them to help with travel expenses, meals, hospitals bills, anything they may need during this time and the months to come.
https://www.perfectlyposh.com/jlkidd/events/1212129

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Sometimes you have to just step away...from being mom.

8/6/2016

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This past week was hands-down one of the best in our "little" family of six. We didn't have anywhere to be, nowhere to rush off too...just take each day as it happened, catch up with family I don't see nearly enough, and make memories. Really that is what this was all about - making new memories, making fun memories, taking a breather from the chaos of our lives and just slowing down before anything catastrophic happens again.

Even in the calm before the storms...there was a longing in my heart, something was missing, something I couldn't quite put my finger on and the toll of not knowing what was exactly wrong was testing my patience, my heart...my whole inner being and towards the end of the week, I was fighting back not only tears, but my about losing my ever-loving mind. Granted, we took four kids nine and under over ten hours away in a car not exactly set-up for such travels to a place they've never been before that wasn't exactly entertaining their level of energy every second of the day...pretty sure it was destined to happen somewhere along the trip. Not to mention the humidity of Georgia and the pressure headaches from thunderstorms rolling in each day we were there as well...yep definitely a recipe for me to not be so level-headed by day four.

However, by the time Friday evening rolled around I made a decision that not only altered the rest of the trip, it helped save my sanity, my heart and filled that longing. The kids have never seen a sand dollar in person, we went to Folly Beach, South Carolina in hopes of finding at least one. That afternoon we spent about two hours on the beach and while we found from pretty neat shells compared to Virginia's beaches, we ended up empty-handed on the sand dollar part. I assumed early in the morning would've been a better time to come, and the thought of taking the kids back to the beach early was tempting...like hell if I was going to wake them up at 5:30am knowing all day Saturday was going to be in the car driving. So instead I offered to get up and go scope it out, even planning out the timing for sunrise because I didn't want to be there in the dark either with more storms coming through Friday night. At first I honestly did not want to be awake that early at all...but as us mom's are we do what our littles ask us to do because we want them to be happy.

So I got up, got dressed set-up the GPS on my phone and then woke-up enough to be oriented and down the road I went as we stayed about 20 minutes away from the beach. Not even halfway to the beach, I realized I wasn't just doing this for them...in fact I was mostly doing it for me.

A Navy brat by birth, growing up in Virginia Beach, the ocean is my home. Some say it has to do with being a Cancer and therefore being drawn to water, but really my favorite and most loved memories of early childhood all happened at the beach with my mom. In the quiet moments of the beach first thing in the morning anything can happen. One of the first things I noticed was a storm starting to roll in, the sun barely peaking through, casting just enough light for the few walking along the shore to see, but not make out the faces of anyone either...tears rolled down my face, I missed the littles and sharing this with them as I saw the pipers digging for clams between waves like in Finding Dory, which we watched together in the theaters this summer. I felt bad for not bringing them to look for the sand dollars, and yet in my tears I was so afraid if I came back empty handed again they'd feel I was a failure and didn't try hard enough to look for them. I began to look even harder for just one...even if it was a small one...I didn't want to let down their hopes for having one. The sun began to come up a little more and I started finding bigger shells and different shells than we had found Friday afternoon and just marveled at all the treasures the storm the night before had left behind for me to find this morning. A flock of pelicans flew over and I remember how excited they were in the car to see them in real life for the first time yesterday, how the day before they played laser tag for the first time ever, how they had fresh from a tree peaches for the first time ever and even learned how awesome and dangerous merry-go-rounds really are first hand...all of these memories, all of these firsts happened during this trip. Their eyes were opened to new experiences never seen before and all because we needed this break from our regular schedules and decided to take it.

Two months ago I nearly died...these moments wouldn't have happened, and honestly if I hadn't of recovered as quickly as I did (though it didn't seem quickly at the time), this trip never would have happened either. I realized since I came home from the hospital there wasn't a single day I didn't move heaven and earth for my littles, not a day I didn't stop working on the things I promised I'd do, folding laundry, cleaning up bedrooms, making new appointments for specialists, switching doctors, finding closer therapies, fixing or replacing the broken items, preparing for school to start back...every day was about them...this moment here on the beach started out as about them...and in this point in time turned to be about me.

I needed to step away from being mom for a couple of hours and recharge my batteries, feed my soul, and just reflect on where I've been, where I'm headed and how to make it all happen. It was at this moment the sun caught my face more and I looked up from the ground and saw this beautiful part of the sunrise. I am more than just a mom, a special needs mom, a mom in college, a mom running a nonprofit organization...a mom struggling just to make ends meet or to even just make sense of world. While I am all of those things...I am still me, a woman in her thirties that loves to sew, splash in puddles, dance in the rain, sing along with the radio or even Broadway showtunes on my phone while the windows are down, drink iced Chai all year long, catch snowflakes on her tongue, let the ocean waves chase me, read poetry and medical journals, prays silently with every ambulance siren, and has big dreams for her future...silly as all of that sounds. This peaceful moment reminded me of all those things...it reminded me that sometimes you just need to step away for a moment and listen to your heart's desires and see where they take you. Saturday morning they took me here...where will your's take you?

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Keeping Your Child with Disabilities Safe During Summertime Fun - from our Guest Blogger Sean

7/12/2016

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Summertime can be tons of fun for families; park playdates, trips to the swimming pool, and vacations to the beach are things many of us look forward to every year once school is out. However, for the parent of a child with disabilities, summertime activities can come with a whole new set of worries as their child is exposed to new dangers and unfamiliar places.

Disabilities come in many different forms; some children have physical impairments such as vision or hearing loss, which means you need to tailor their safety needs depending on how they receive information. Others have trouble processing pain, so they may not realize that a particular activity is unsafe. Here are some things to think about this summer as your family prepares for fun or travel.

Playground safety

Playground equipment can provide hours of fun for kids, but it’s important to explore the area yourself first to make sure there are no sharp edges or hot metal (slides are a major culprit during hot summer days). Take a look around the perimeter to make sure there are no broken pieces of equipment or tripping hazards and address as needed. Areas filled with mulch, sand, or other soft materials are preferable over gravel or concrete. Finally, simply being present and aware of your child’s activities while they play is invaluable. It’s important to make sure your child is rested; tiredness can contribute to slow reactions or attention deficit, which can be dangerous should your child fall or injure themselves.

Water safety

Pools, beaches, and lakes are always great destinations for families in the summer, but there are a few things to think about outside of general water safety where a child with disabilities is concerned. According to the CDC, many items of safety equipment may need to be specially fitted for your child, such as life jackets. If you’ll be going out on a boat, you may need to prepare to have a harness or seat belt to keep your child safely contained in their seat. Many of the bigger beaches offer ramps or boardwalks that will be fine for wheelchairs, but sandy areas often aren’t. You may need to do a bit of research before your trip to find out what you need to bring for the ultimate safety and comfort of your child.

Staying in hotels or with family

Staying in a hotel can be a relaxing experience for many; no dishes to wash or laundry to do, and room service when you don’t feel like going out. If you’re staying with a child who has a disability, however, it’s important to make sure the room is equipped with anything they might need in case of an emergency. Do the fire alarms have strobe lights for the hearing impaired? Does the shower have a safety rail and firm rubber mat? If there is a swimming pool, is the area kept secured so children can’t wander over? Are the doorways wide enough to accommodate a wheelchair?

Staying in an unfamiliar home can present an entirely different set of issues, including toys that may be choking hazards and unsafe kitchen implements that need to be put up. It’s important to talk with your hosts to make sure they’re aware of your child’s needs, especially if they have food allergies. Also, talk with your child about where you’re staying and let them know of any safety issues and what to do in case of an emergency. For children who have trouble with communication, it’s imperative to talk to them about their surroundings because they may not be able to tell someone--perhaps in your absence--that they are in danger.

Sports

Summertime sports can be big fun for kids of almost any age, and they’re also a wonderful boost to self-esteem and can help little ones in being social. It’s important to communicate with coaches and teachers about your child’s needs before they get started, especially if a learning disability could make things complicated down the line. Some equipment may need to be adjusted for your child, as well.

Summertime can be fun for your whole family, no matter what their needs or abilities are. Keeping these tips in mind can help you relax a little knowing that your loved one is taken care of.

Sean Morris is a former social worker turned stay-at-home dad. He knows what it’s like to juggle family and career. He did it for years until deciding to become a stay-at-home dad after the birth of his son. Though he loved his career in social work, he has found this additional time with his kids to be the most rewarding experience of his life. He began writing for LearnFit.org to share his experiences and to help guide anyone struggling to find the best path for their life, career, and/or family.
Photo by Pixabay via AdinaVoicu

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We're Partnering With The Mighty!

7/9/2016

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We're thrilled to announce a new partnership that will bring our resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We're dedicated to helping people with chronic and life-threatening illnesses in their lives. With this partnership, we'll be able to help even more people. Many of our families have submitted stories to The Mighty about their personal experiences and I am always amazed at the articles that I have read from the families we have served.

Over the last several years I find myself reading more personal stories, thank you letters, informational articles that have all been republished by The Mighty from people around the globe. Having a son diagnosed with Autism some of the first articles I read after his diagnosis came from The Mighty.

We've yet to submit a story ourselves, mostly because I didn't realize we could, but maybe one day you'll see one of our stories published there too! In the meantime we look forward to bringing new stories to our families each week.

We encourage you to submit a story to The Mighty and make your voice heard.

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

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

Open Letter - to the Triage Nurse Who Called Me "One of Those Moms"

Kids Helping Kids - Bronze Award Service Project by Girl Scout Troop 2183

When a Gown Comes Together

Making Moments Happen - UVA Breastfeeding Medicine Program

Here I Am - The Reality of CHD

Sometimes you have to just step away...from being mom.

Keeping Your Child with Disabilities Safe During Summertime Fun - from our Guest Blogger Sean

We're Partnering With The Mighty!

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