Energy, like all things, has a limit.
Mental toughness and maintaining our “normal” is always our desire. This week, it seems that our energy levels are depleting and evaporating by the second.
A struggle to walk for a child and daily injections have taken their toll on our family. We still await answers and we struggle with the wait immensely.
We fear the unknown and wish our fears could evaporate.
Meeting families from around the world recently with the same struggles as ours was both humbling and scary.
Their stories are the same, their symptoms echo Kelsey’s, but underneath the surface right now, something is happening inside of a tiny body that cannot tell us why.
Another medical challenge increased its force this week and our limits are being tested.
Our energy has evaporated.
We hold on to hope but fear it will evaporate, too.
Giving can be a challenge. Giving of time, giving of money, and giving of energy takes a toll on us all at various points.
Giving Tuesday was yesterday and our efforts alone on this charitable day raised almost $7000 for our non-profit organization.
Perhaps this support (following our most successful gala to date) came at a perfect time as our patience and faith have been tested during the course of the past months in virtually every way.
Then we saw the smiling faces at the gala of those who cared enough to support our efforts. On giving Tuesday, we surpassed our goal by 3353%. Though it is not the million or so we need to support the research efforts necessary to move research and therapy options forward for dada2, every dollar counts.
Our first gala came at a time when Kelsey’s arms were full of inflammatory markers and inexplicable red nodules. Our third gala came at a time when round, red lesions lingered even with intense treatment and therapies. We are trying to remain strong and appreciate all of the many who supported us over the past few weeks with words and donations.
We ask you to mark your calendars for November 23, 2019 and hope that our fourth gala does not have us facing so much uncertainty.
Kelsey & Kelsey’s Kaleidoscope, Inc.
Tonight felt wrong. We went to bed with a child who could not walk or get up from the couch. We were unable to receive medication due to a holiday, we continue to wait for a prior authorization for another, our incredible doctor has fallen ill herself, and we are just plain tired.
We are tired of feeling wrong and tired of not knowing why.
We seek answers but find that our decisions can be wrong.
Our hope drives positivity, but it too has a breaking point. Sometimes our hope overshadows the truth. Sometimes the truth takes a hold of our hope.
A morning judgement call felt wrong. Instead of fixing it immediately, it was an all day point of worry and concern. If anything, we always trust our instincts and feel we do right by our child.
Today, we were tired and tonight we are afraid. We were blinded by what we hoped we saw and scared of what no one can tell us. We feel it is wrong that the biopsy results have still not been conveyed to us.
Our medical team supports us and we are incredibly grateful to them for that care. We are grateful for our committed doctors and their evening responses to our concerns. We just don’t feel they know enough to ease our fears.
That feels wrong.
We are not always sure what is wrong, but we certainly wish we could make it right either way.
Rare is defined as “marked by unusual quality, merit, or appeal : DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.
The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.
The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.
A relative recently stated this journey as the unimaginable. That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.
Rare is never a word we want to use for our child’s childhood nor our child’s health. Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.
Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.
Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.
The story behind the smile… the story behind the photo is one of a child with a rare disease on the first day of school who found excitement covered by fear.
In this photo, large red lesions covered the skin of an otherwise smiling face and joyful young woman. A sweater on the 92 degree day was worn to mask the red posts along with high socks and a long dress strategically placed around the worst of them. Her positive and calm demeanor were met with anxious feelings and fear about what the other children would say if they saw.
She told kids they were bug bites. Then she was sick of that story so she said they were rug burns to others. Overall, she was scared. She told a story because she did not want to get into her disease with everyone (so she said).
The lies she had to tell others to feel confident on her first day of school were challenging to hear as a parent.
Consequently, the parents of a child with a rare disease felt anxious and were at a loss for words. Their brave child embarked on a new year in a way they never experienced before.
Sometimes the smile a child is wearing is not reflective of the feelings they face inside.
The story behind this photo is one we will not forget, but one we are proud to share to remind us all to share a kind word to make someone’s day. You never know what is going on behind the smile.
The routine response to 17 vials of blood taken to check, maintain, and sustain still makes a parent weak.
We leave the National Institute of Health Sciences feeling tired and breathing a few sighs of relief. Two full days of testing, talking, and questions is tough to endure. The entire visit was kept exciting because, “I am going to meet the Phillie Phanatic,” Kelsey told anyone who would listen.
Jake Arrieta of the Philadelphia Phillies had impeccable timing to offer his suite for a charitable night for Kelsey’s Kaleidoscope, Inc. All day long, sporting her Phillies shirt and hat, Kelsey remained positive and focused on the game and a chance to meet the Phillie Phanatic. Thank you to the Arrieta family and our generous donors for making the evening full of fun. Though they did not win the game, we came home positive and grateful after a long two days.
Each Tuesday night is unique. The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.
Tuesday evening was no different this week. The marks all over the belly and the back were. After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.
Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.
The thunder outside echoes our inner fury and angst.
We hope the rain relieves the heat and our morning medication subsides our worry for another day.
Wednesday Addams… a classic television character was the recent choice of a party we were invited to with an Addams Family Theme.
Wednesday, “the dreaded day” seemed fitting in many ways for Kelsey. The mention of the weekday sends a jolt of fear and frustration to Kelsey each week. We were surprised that she decided to dress the part, but being Wednesday “the worst day of the week” on Saturday made her smile.
Kelsey said that this was the first and probably last Wednesday she would enjoy talking about.
Wednesday on Wednesday does not have the same sentiment, but at least she found a way to smile for Wednesday (on Saturday).
Though the passage of time in summer months seems fleeting, this summer is one where we are trying to savor the moments we have together in sunshine or rain.
As a week of storm clouds captures our summer days and nights, we have found time to walk/ride bikes in the rain, make slime, play games, and smile despite our recent fears.
Our social media connection to other patients around the globe has recently found several cases of dada2, the genetic condition which manifests as Polyarteritis Nodosa for our Kelsey, in India. Each story is unique and this global connection makes us feel a mix of deep sadness, empathy, and hope.
Each time a new patient reveals his or her struggles, strokes, or current health concerns, a sense of fear strikes internally. I read their stories with tear-filled eyes most of the time, wishing there was more I could say to ease their fears or comfort their frustrations.
The truth can be more sobering than we want it to be at times. This week’s stories and patient truth has certainly done that for our family.
We hope and pray for all families that they will not continue to face these fears and our global partnership will lead to the cure we all desperately pray for day after day.
Funny how a day of the week once so arbitrary holds the weight of the world for us these days. Last week, Wednesday brought relief through an injection.
So far, so good. The dose did its job for now. Labs were not great, but they did not signal any further alarms. Observation and instincts guide us now.
This Wednesday, we wait to see if the dosage is right. We wonder if it is enough. We feel immense gratitude for the prayers and well wishes we have received over the past few days. The worry and waiting have been a struggle, to say the very least.
If you read these posts, we thank you. You are aware of the weight of Wednesday and the range of emotion it brings. Sometimes the weight resembles fear or anger, other times it is a sense of gratitude or courage, and every now and again, it echoes strength. Each Wednesday is also a time of reflection. These words help release the strain and stress. Each like, view, or comment reminds us that there is always a community to care for us and stand by us.
May the weight of your Wednesday be sparse today. We catch our breathe today and hope our weight is light, too.