I’m not a writer but sometimes writing is the only cure for an aching soul. As Westley’s first appointment the morning of August 24th nears I see the worry in his eyes and feel the growing lump of emotions move their way through my body. Westley does not fully understand the havoc that Duchenne will reap upon his body over time but he does know and feel how stressful 4 days of constant tests and doctors have upon him physically and mentally. It will take him days to recover from these events. We have planned as many “fun” activities as possible and are blessed to be staying with 4 amazing “mothers” to ease our stress. Even still, to watch my baby well with tears at the mention of Cincinnati is heartbreaking. Westley loves an adventure but this is one he cannot seem to find joy in right now.
Most days I can ignore Duchenne altogether. Yes, ignore. It may seem weird but I see his physical limitations, medical equipment and wheelchair as our “normal” and then it’s time to deep dive into “how he is really doing”….Duchenne then becomes something you can’t ignore or brush from your mind. Its impending doom comes over you and lingers like a gray fog that’s weight takes over your every movement and thought. I manage stress with eating right, exercise (its free therapy) and just enjoying life but this one week a year even all those coping mechanisms combined seem to not be enough.
He already lost ambulation this year. Is this the year the Cardiac MRI shows he is declining? Is this the year he starts to loose lung function? How much time do I have with him… a year, 5, 10….the unknown is the most terrifying thing about Duchenne. Until the “all clear” verdict is revealed next week every step forward, every smile and laugh will be made knowing I have to hold strong for Westley and for Wyatt. They must not feel this burden because their little hearts are young and tender.
I live by this quote “We don’t know how strong we are until being strong is the only choice we have”. I thank God every day for making me such a strong person. He clearly had a plan for me. As always your prayers are appreciated and if you could throw a few more Westley’s way next week we would be grateful.
Seems like forever since I blogged. Sometimes all the other things in life take over and I forget to take time to thank our Warriors for all their love, prayers and support. You all have been there for us over the years and we appreciate each and every one of you. We are off to Cincinnati Children’s Hospital for the last week of August. I’ll be sure to send out an update of the week’s adventures and medical results.
In June I attended a conference in DC held by an organization called Parent Project Muscular Dystrophy. I had heard of them after Westley’s diagnosis but not until the last year have I learned of how they are caring for those affected with Duchenne.
Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—their mission is to END Duchenne.
They invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. They advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. They demand optimal care, and they strengthen, unite, and educate the global Duchenne community.
I left the conference amazed at what they are accomplishing and full of hope for Westley’s future.
On September 19th we will be hosting our 3rd MD Palooza benefit concert; all proceeds this year will be donated to PPMD to advance them in their fight to END DUCHENNE!
For those that are local I hope you can make it out to the event.
For those that wish to help us back this organization I ask that you make a tax deductible donation here – http://www.parentprojectmd.org/site/TR?fr_id=3920&pg=entry
Please check out the PPMD website to learn more – www.parentprojectmd.org
Save the Date:
September 19th @ 2150 Anderson Hwy, Powhatan, VA 23139
Gates Open at 4PM
Adults – $10 Kids under 17 – FREE
Proceeds will benefit Parent Project Muscular Dystrophy
We have booked 3 of Richmond’s best bands that play 80’s, 90’s, and new party rock!
Red Light Romeo*Age of Excess*Monkey Fist
There will be food and beverages for all to enjoy. Its family friendly folks so bring everyone you know!