I met a man named Joey

On a bright not quite summer day I met a man named Joey; it was divine. Sometimes it’s difficult to explain the ways I hear God, it wouldn’t make sense to anyone but me, I guess those moments are too special so they are just between us. This experience is obvious. I’ve put off writing about it for at least two months, and even longer to post it. I haven’t written anything because it’s just been so darn busy, and when it hasn’t I’ve taken full advantage by doing nothing.

Anyway, on this gloriously sunny day I found myself leaning on the hood of my van barefoot at the Marina, after walking approximately 6 miles with a good friend. I happened to lock my keys, phone, toddler, and shoes and socks in my car. Luckily, my walking buddy was there and offered to drive (like a racecar driver!) to my house to get my spare keys. Thus, leaving me awkwardly sitting on the hood of my car barefoot. As I waited, a big white van pulled into a handicap parking space near me. I watched as the driver unloaded the passengers and walked them over to the playground. I immediately recognized this group of adults as special needs. I watched them as well as the other people walking by me in between worrying about my kid locked in the car and the fact that I looked crazy for standing here with no shoes on. I hoped nobody was calling the police for either of those reasons. Despite the number of people out enjoying the weather, not one person said anything or looked twice in my direction. I checked on Cooper multiple times, and waited, waited, waited (what felt like years was actually only 45 minutes). I watched as the group split up; one was off to walk the path around the marina, while the other stayed at the playground. I wondered if they were in a day program, although it seemed like they were in full-time care. The thought made me suck in a deep breath; I avoid thinking about these places. My mind is flooded with questions… Why? What about their families? Are they happy there? Was that the best place for them? Would this be Keegan some day? On one hand, I would be thrilled for him to be walking or playing like this group. On the other hand, what happens when he is an adult? What if he stays just the way he is, except heavier, and is an adult? This is not a thought I like to think about, and I can’t let it go any further than that. I like to think I have come a long way in accepting Keegan being on his own path and not following typical norms and that some things may never happen, but I’m not all the way there yet. These guys seem happy enough to be outside, soaking up a quiet afternoon at the park.

I switch back to worrying, wondering how long I’ve been standing here, surprised nobody’s asked if I am ok/need help/where are your shoes/is there a child in there? For all anyone knows I am trying to steal the van I am leaning on and periodically peeking into. As I am staring (and scanning for the familiar car to the rescue) off into the distance, I notice one of the guys from the park walking towards me; at this point he is about 50 feet away. I start to panic slightly; half hoping he isn’t wandering off, half hoping he isn’t walking toward me. Why am I afraid he is walking toward me? Because, I don’t know. I’m slightly socially awkward, a shy extrovert. Because I don’t know him, but I know he is different. He’s wearing a hat and sunglasses. I wonder if he is blind, or at least partially. He’s getting closer. Please don’t talk to me. I’ve spent all this time wondering why nobody acknowledged me, but really I don’t know what to say to you. Isn’t it funny that I have a child with special needs, and I still get uncomfortable around other people with special needs? I don’t know why. I am ashamed. It’s the not so pretty truth. It’s not them as much as it is me. I don’t know how to respond, I don’t want to hurt anyone. Okay it’s obvious he is walking to me, he’s 10 feet away. Smile. He says hello, and I smile and say hello back as he extends his hand to shake mine. He says his name is Joey; it takes at least 3 times for me to understand. This is what I don’t like, I wish I understood, I hate that I don’t. I mostly try to smile and nod as he says something else I can’t make out. I see a glimpse of his eyes behind his glasses and they look milky. He isn’t blind obviously, he saw me. I tell him I am waiting for a friend to bring my keys, notice him look toward my feet and laugh when I mention my shoes in the car. Then he says “I want you to know that I care.” Pause. “I care.” Whoa. I understood that just fine. Smile. I say “thank you, I will be fine.” Keep smiling, don’t cry. Just then, the other group is returning and the woman in charge calls Joey over scolding him for wandering and smiles to me apologetically. I sit leaning against my van, stunned. It is no coincidence in the rush to get everything loaded into the car I ended up locking myself out.

 It was only moments after my friend left that this white van pulled up. Just in time to come face to face with one of my biggest fears. Not being able to take care of Keegan, having to make the decision to put him in a facility to care for him. Being confronted with an ugly truth. As well as dismissing a lie, I frequently believe, feeling like I was invisible to the rest of the world. All because Joey walked up to me to tell me that he cares. Whoosh, I was flooded with emotions. Most people probably don’t even know how often I’ve felt invisible, like nobody notices, nobody cares. All those times I am struggling, drowning, desperate, and people go on about their day around me. God intervened to let me know that he cares, and sent a sweet man named Joey to tell me so.

Psalm139

O Lord, You have looked through me and have known me. ² You know when I sit down and when I get up. You understand my thoughts from far away. ³ You look over my path and my lying down. You know all my ways very well. ⁴ Even before I speak a word, O Lord, You know it all. ⁵ You have closed me in from behind and in front. And You have laid Your hand upon me. ⁶ All You know is too great for me. It is too much for me to understand.

Shortly afterward my friend pulled up with my keys. My kiddo was perfectly fine; I couldn’t believe he didn’t cry once! I thanked my friend for racing to and from my house… It was record timing, even if it felt like years. I left the marina with an odd feeling; I kept running the encounter with Joey through my mind. Repeatedly “I care.” Simple enough, yet two words I don’t hear or feel nearly enough. If I don’t hear them nearly enough you probably don’t either. Know that I am reaching out to you through this jumble of letters and surrounding you with love. We care, God and I.

Thank you Joey.

With that example we are starting a little challenge (we’ve already posted it on FB, but maybe after this, it will take off)! Feel free to share your experiences on our Facebook page.

Challenge #1 Grab a pack of post it notes and write encouraging love notes to friends, family, and/or strangers. Let someone know YOU CARE. Be creative! You never know how much a simple note like that might mean to someone! I'll let you in on a little secret... I do this myself, I keep post-it's in my car and leave anonymous notes for people, especially when I see a friend's car parked somewhere. I am challenging myself to do this more often… Maybe daily. How ‘bout you?

Angels Among Us

It is currently 11:03 am on a Tuesday. I am sitting in bed under a warm fluffy blanket with a steamy homemade vanilla dirty chai and a bag of broken brookies (brownie cookie combo) I made last night a bowl of cinnamon mini wheat cereal (opting for a slightly better choice). In my bed are two of my boys, with clean diapers, a bowl of honey nut cheerios, watching Cars 2. Let’s not forget my sweet puppy sitting on my legs; she should be warming up my feet.

Don’t you wish you were me? Come on over! I will gladly let you fill in for me!

When you lift the curtain, a little more you will see: 

There are cheerios ALL over my bed. Keegan is about to kick Cooper in the face. The puppy is waiting for an opportunity to steal cheerios. Cooper just had his third poopy diaper changed. I have a list of people to call and email that I will probably never get through or hear back from. Dry mini wheat cereal is my breakfast, and possibly lunch. (It was breakfast and lunch… (**I also ate the brookie crumbles with the boys in the ER as dinner) & I left my house phone on the charger… I just got comfortable. 

Bet many of you put your hands down… Wait it gets better.

Both of my sinks and half of my counters are full of dirty (rinsed at least) dishes. There are remnants of vomit and diarrhea on my laundry room floor. Keegan’s entire bed needs disinfecting. My house probably looks like a tornado hit, compared to how pretty and clean it was yesterday. Take three steps down the hallway to the kid’s room and you will be overwhelmed with the smell of urine. My two year old is now stealing MY cereal.

Yes it’s okay to laugh… I certainly do!

I woke up late today. I completely slept through my alarm. As I rushed to get breakfast made, cups prepared, I texted my walking buddy to let her know I was running VERY late. Conner luckily was up and getting ready for school. I asked him to let the dogs out to go potty. Minutes later, I step in a pee puddle on my carpet. When I get Cooper from bed, he is soaked in pee. When I went to get Keegan, I found him covered in vomit and diarrhea (I still don’t know how to spell this word despite how frequently I use it!) Quick change in plans. Keegan will NOT be going to school, and promptly needs a bath. After peeling sticky clothes off and wiping the poo that seeped all the way down to his knee (and through his clothes), I carry him to the bathtub trying not to think about the fact that my clean shirt is exposed to residue. EW. 

Now we are going to be L-A-T-E! Time to tell my friend we will NOT be walking today. 

For probably the thousandth time in the last week, I wonder what I would do if this got worse and Keegan became deathly ill. (This magnified as I sat in the ER waiting for a ct scan, not sure what was going on.) We have dear friends, whom I've never met but have an unbreakable bond as parents of children with special needs, whose son was critically ill for weeks, with seizures and fevers they couldn't find a cause for or control. Their sweet boy Connor is the same age as Keegan, and has the same diagnosis. They even look similar to each other. When I heard he was sick, and having horrific seizures, my heart skipped a beat. Thankfully, they have a wonderful support system, and their son is home and doing much better.

I wish I could say the same for Gavin. I found them through another blogger last week. I began praying for their family instantly. I read most of her blog; I found immense inspiration, and admire her spirit. I followed along inspired and devastated by their story. I can’t tell you how many times this scenario has played through in my mind, and to watch it happen so unexpectedly literally wrecked me.

“Gavin, has passed. It happened shockingly quickly; last week, he was a five-year-old boy with special powers who had just started dancing. On Wednesday he stopped breathing and went into cardiac arrest. On Friday Kate and her husband, Ed, made the decision to donate his organs. Last night, he was officially pronounced dead.”  From Love that Max

A dear friend of mine posted this picture earlier this month that touched me so deeply. Since then it's been popping up more and more. I imagine any parent with a special needs child gets choked up at the sight of this... It is so beautiful!

Insight from the last few weeks:

Just over two weeks ago Keegan nearly choked to death, no exaggeration needed. I can’t begin to explain how utterly terrified I was during the 8 minutes it took for his body to dislodge the food, and the arrival of first responders one minute later. I am still slightly traumatized.

A week and a half ago we saw a new neurologist who told me that what I see is what I get. That Keegan will not likely improve aside from possibly calming down, as he gets older. Essentially, he didn’t believe Keegan would make any significant developmental gains.

During all of this I’ve been faced with some difficult truths, and wondered what God’s plan is. At what point will Keegan be free from all of this? I don’t agree with the doctor whatsoever but there may be an ounce of truth to his statement. I have to accept the reality that without some miraculous intervention Keegan will continue to be severely developmentally delayed indefinitely.

I love my son, and I want so much for him, I also want more for him than he will probably ever have in this life. It is devastating to think about. Some days I pray Jesus will come quickly. I pray Keegan will accomplish all God has planned for him so he can be free. 

I am in awe of Kate.

With that said, I encourage you to read her post, and do something to honor this family.

Run with the angels superGavin!

Pray for their family, Connor’s family, and mine as well.

On the bright side:

My wonderful husband is home! After a ridiculously long 3 weeks (I felt like it was over 5 months!). We all missed him dearly! My sweet Cooper says “thant to Momma” after I give him most of my cereal, and “Bushu Momma” in the most adorable way every time I sneeze. My puppy loves me even though I stepped on her as I tripped over her and yelled at her for being under my feet. My dear Conner made his own lunch today, and puts up with my attitude and short fuse on these crazy mornings. Last but not least… Keegan. Despite derailing my day, and my life in so many ways, is alive. He is resilient, he bounces back quickly. He hasn’t been hospitalized in a year! Through him, God has given me strength and compassion that knows no end.

Update: 

It is 8:25 The very next evening.. My darling hubby is getting Keegan dressed while he fills the room with uncontrollable laughter. It's distractingly adorable, even with the farts .Just after I posted this we went to see our pediatrician. I asked the Dr if we could have x-rays ordered prior to our appointment to check for any blockage due to constipation (which we’ve been dealing with over the last week slash his entire life). When she looked at the X-rays, she expressed concern. Keegan appeared to have a significant amount of gas in his stomach, and looked distended. Keegan didn’t seem to be in much pain but we agreed that in his case appearances aren’t the most reliable. Since it was just after 5pm, she recommended we go straight to the ER to have a CT scan done, as this was the fastest route. I had to get a hold of the hubby to come pick up the other boys. My terrible two-year-old monster successfully demolished all of the snacks bribery I brought along and was rapidly turning into a Gremlin. We met lovely nurses, who were so sweet I had to share some brookies we made to honor Gavin (more info to come). After talking with the ER Dr and seeing a similarly concerned response from the X-rays, I had to chase away negative thoughts. Generally, when we go to the ER I (sort of) know what’s going on, what action needs to be taken, and how it’s all going to go down. This was completely new to me, and sounded like it had the potential to be serious. YIKES!  This situation coupled with a lot of waiting, my cell phone dying, and Keegan waiting until the last minute to cooperate and guzzling the contrast liquid… It took a lot of distraction to remain calm and not think terrible thoughts. Not even Pinterest could capture my full attention. Millions of minutes later 3.5 hours later we got the results from the Dr that everything looked okay, there didn’t appear to be any obstructions, and we were going home! Relief, thank you Jesus! I quickly (after handing out some more brookies in honor of Gavin on the vehicles parked next to me at the hospital) headed home and to bed. Keegan is a champ, and had a great day full of therapy today! Thank you for your kind thoughts, prayers, and caring. Much love!!!

We are so blessed, and my grandma is right, I wouldn’t have it any other way.

Special post from Grandma

One thing I love is having other people share on our blog... I really like getting stories from other people’s perspectives. I am currently begging my husband to write something from his point of view. I don’t know if that will ever happen but I feel like he has such an important story to share that it would be a shame if he didn’t. Feel free to give him a nudge for me :)

When we began, I also asked my friends and family if they would write for the blog. Whatever came to their heart. Whether I’ve written about the same frame of time or not. I treasure the layers of these stories. I look forward to continuing to share other people’s experiences as well.

This beautiful blog was written by my Mamma, I hope you enjoy it as much as I do.

Love you Mom!

When my daughter asked me to write something for Keegan’s blog, of course I said “Yes, absolutely.” Then I started thinking about Keegan, the last 6 years, and how I can share him with you.

First time meeting Keegan in the NICU 06

 When my daughter asked me to write something for Keegan’s blog, of course I said “Yes, absolutely.” Then I started thinking about Keegan, the last 6 years, and how I can share him with you. I have to start with one word to describe Keegan, he is precious. His life force is both excessively delicate and incredibly resilient. I think of his fight to live as newborn and how incredibly calm and serene he seemed in those first few months. Life around him was chaotic as we were trying to absorb the diagnosis and adjust our world to do for him anything and everything that would make him not sick or less sick. I say we, because Krystal, Conner and Keegan came home to live with JD and I when Keegan was released from the NICU. I honestly can’t imagine a more important opportunity than to support your child as they are supporting their child in the tough “I wouldn’t wish this on anyone” times. Having a deep and abiding love for Keegan isn’t tough.  Keegan has always been adorable. He was a cute sweet baby that you could hold on to forever; he rarely fussed.

Me holding Older brother Conner and Keegan

 I tell myself he liked being held even though he never requests it or responds to physical touch the way babies and children usually do. Presently when you pick Keegan up he will respond with a smile or giggle, or snort, if you are lucky you get a laugh or shriek. The opportunities of picking him up are like the days of spring, they will merge into the season of who knows. I imagine walking side by side. I will apologize now for rambling around mentally. Reading this may be confusing to some. I hope that along the way I make points and give you insights to the life that is Keegan’s.

Post bath-time

Before Keegan’s first birthday he started having seizures. I don’t really have any idea of what that was like firsthand. He couldn’t communicate to us what was happening. We entered a dark and scary time, knowing that his life essence was being attacked by some force that we couldn’t see; but we could tell he was fighting it. Those daily battles definitely took a toll. 

ACTH really helped get the seizures somewhat under control, but they made him miserable... And really chubby!

Keegan fought the fight though, and he did so with what anyone would consider little complaint considering how much I imagine he endured. I think back now of how terrifying those days were and how I prayed and begged and worried and prayed some more. I think of how I felt helpless, thinking that somehow my damaged DNA or gene makeup had manifested itself that way and it’s causing my grandson to suffer. Ahhhh guilt, the Devil finding his way into my head. I rebuke you Devil, you lie. I’m guilty of a lot of things but this isn’t one of them. My DNA makeup has been a thing of mystery my whole life. Having a birth certificate with blank spaces in the “name of father” section contributes to that. My mom dying when I was 6 and being cut off from the only members of my family who may have known or know the answer to that question but refuse to discuss the subject keep the mystery alive. Who knows what clues lay in the past; I sometimes wonder but then the present yanks on my attention (squirrel) and I am off leaving that subject/question for another day. I have on many occasions felt God’s presence and influence in my life so I accept the fact that He loves Keegan and I accept the fact that God has always held Keegan close and I am grateful for HIS presence especially on the dark days when our hearts were fearful, doubtful, angry, or distracted. He is always present even when we don’t see it. I remember how once the seizures were under control Keegan showed glimpses of his personality; a smile or giggle.

Like this moment...

Moments like these are so precious and sweet that I tear up thinking of them even today. I remember the victory of Keegan learning to sit up on his own.

 I think of his recent milestone of standing on his own and how he will walk with you (with guidance); or in the gait trainer and how I have been told that in school he will just take off. Zoom Zoom! 

These mental visions make me smile and tear up because they are hard fought victories for him and Krystal and Rick. Those who have loved ones who have gone through the hours and hours of multiple kinds of therapy to come back from head injuries or other physical trauma know what I mean.

Raising Keegan has come with many other challenges; one that came to light very early on was food. Every living thing has to eat to continue living. As an infant, Keegan couldn’t take any type of formula except Nutramigen. He didn’t take to breast feeding, which was very hard on Krystal who desperately wanted him to have the best possible chance. He was in the NICU for the first 2 months of his life; that meant pumping every day. I don’t remember the details or exact timing of when Keegan was switched to formula. I do remember that Krystal had to try several different kinds before finding one that didn’t make him vomit profusely; those were more anxious moments in what was already a nervous time. Keegan has never been a “motivated” eater; his body doesn’t send him the chemical signals that spur the desire to eat. So getting him to eat enough is an obstacle. Obstacles must be overcome! So feeding Keegan food that is packed with nutrition was the goal. Krystal spent hours reading books to learn more about food. She learned a lot more about food than I will ever know. Keegan, Conner and Cooper benefit from all that effort and knowledge. Krystal researched different grains and interesting things like brewer’s yeast to increase the amount of protein in Keegan’s diet. She spent countless hours steaming and processing and freezing fresh veggies and fruits because she is dedicated to giving Keegan the best. Making food that was good for him was only part of the battle. Remember Keegan isn’t a motivated eater. Many many many times the meal itself required patience, coaxing and sometimes getting even a few bites into Keegan’s mouth required a little more; like pinching his nose shut and getting spoonful in real quick when he opened his mouth.  Keegan has always had the same attitude about food. He isn’t a picky eater, he is an “ehhhh whatever” eater. But meals deliver medication everyday; medication is not negotiable so neither is getting food into the mouth. I remember Krystal telling me that the doctor or doctors advised her to have a g-tube put in Keegan’s tummy and how she agonized about that because she intuitively knew that while that would make life easier it wouldn’t necessarily make Keegan’s life better. I have read that children with ONH/SOD and other brain type disorders, sometimes have aversions to some textures and that children sometimes don’t want to or they often have no motivation to eat, g-tubes are an alternative that works for many families. Knowing what is the right thing to do for the individual special needs child isn’t an easy thing. Knowing your options, evaluating the pros and cons are important especially when it comes to medical stuff that is somewhat if not completely permanent.

I’ve come to see that each child with ONH/SOD is as unique as a snowflake and each of those follow its own path. I am grateful that we have special moments in time watching Keegan grow. I don’t compare him to other kids his age whether they are healthy or they have been diagnosed with SOD or some other disorder. I know from reading bios about many children with SOD that the impact the disorder has on the individual is as unique as one of those blown ink drawings you see. Knowing that Keegan’s drawing is still in the beginning stages with many more additions to come leaves me curious. I am hopeful and grateful for everyday.

We have experienced pure happiness watching Keegan reach a milestone of standing on his own without harness etc, for 5 about minutes. He is also currently working on and becoming more familiar with feeding himself with a spoon and crawling across the floor on his hands and knees. I know that we influence but don’t control the timeline. We enjoy and celebrate the milestones and just like families with “normal 6 yr olds”, we celebrate the moments “look, look, he has it” and give thanks for them because those moments are so incredible. We are blessed enough to witness them and be mesmerized. Like any parents we want nothing more than to have and to share our joy. In order to get more, Keegan has to work through hours or days or weeks of effort and learning. While he works mom and dad anticipate, manipulate, encourage, support and learn whatever they can to help Keegan reach the next goal. Nothing is taken for granted. I know you understand, there really isn’t anything a parent won’t endure if it will benefit their child whether its hours of piano practice, years of sitting on a bench or chair watching games, weeks of sitting next to a bed next to a child that is undergoing chemo or treatment, or giving them a kidney or plasma because it will extend or save their life. I also accept that while I am Keegan’s Grandmother and I love him dearly and give him anything humanly possible that one thing is true; I don’t fully understand what it is to be his parent because as close as I am, the responsibility for his life doesn’t rely directly on me like it does on Krystal and Rick. Keegan’s very existence depends on their constant care and vigilance. Keegan is 6 now, he is walking with support under his own power and he is learning to crawl. He experiments with expressing himself verbally; the other day Krystal got video of him repeating a syllable “TA” for her. That’s one of those rare moments I referred to earlier.

Krystal and Rick will keep working and planning and building on the skills Keegan has through the days to come. They will take one day at a time. Keegan will continue to need help with meals, baths, changing diapers, getting dressed, daily hygiene, etc. I continue to hope and pray for the day when we can make a peanut butter & jelly sandwich, cut up an apple, pour a glass of juice and tell him lunch is ready. It’s a simple but beautiful vision.

 Krystal and I have talked a few times about how some people think that if a parent has a child with disabilities, illnesses or diseases that the parent did something to deserve that. Like a curse or Karma or some other type of punishment. Krystal as a human can’t help but be hurt by these opinions or statements even if the people who tell her this are misguided or in some cases just being spiteful because of some imagined slight. I have told her on multiple occasions that I believe that having a child like Keegan is an exceedingly rare opportunity to witness the purest love this world has to offer. I know that love like this doesn’t come without sacrifice and pain but through those experiences, this is the most complete; unconditional kind of connection. 1 Corinthians 13 speaks of love and what it really means to love and be loved by another. The last two verses have been a light for the path that I find myself on; I imagine that all of God’s children are on the same path or a path that is similar. For now we see in part as if looking through a darkened glass but then we shall see clearly. Now I know part, but then I shall know as I am fully known. Now abide in faith, hope and love, the greatest of these is love. So, I will continue to live life as it comes to me; and since my life could have ended already I will be thankful for each day. I will continue to draw comfort and knowledge from the faith that the Good Lord has been gracious enough to let me have. I will remember that I am, and Keegan is, saved by Amazing Grace, and that sometime in a future that I can’t see or predict, we will be together. Seeing each other without the obstruction of the dark glass, and we will know each other more fully and it will be glorious. Someday…

Jonathan

Today we begin another silent auction on our Facebook page… All of the proceeds are going to help children with severe developmental delays receive Intensive physical therapy. I pray that one day soon everyone’s insurance will cover this therapy. Until then we can’t sit by knowing other kids would be missing out on this opportunity.  I am extremely excited about the first family we will be helping. When I decided this would be our next step, I knew Jonathan would have to be the first. I met his mother Nancy last year at our kiddos Kindergarten graduation. After the beautiful ceremony put on by his teachers Barb and Missy, I was introduced to Nancy. She was also raising money for her son. She was trying to get him into a physical therapy program. This was the first time I heard about the program. We spent some time talking about fundraising. I told her what we were doing, what worked for us, etc. Since then I’ve gotten to know her a better. I believe she is a remarkable woman, and look forward to seeing Jonathan grow!

Here’s their story:

Jonathan came into my life October 3rd 2006 at 12:36pm. The moment I laid eyes on him, I fell in love. His honey eyes were the most beautiful I have ever seen. He was absolutely perfect.
On December 12, 2006 my son was fighting for his life; he had been a victim of Shaken Baby Syndrome. I wished it was all a dream but it was not. The bad news kept coming. He sustained severe brain damage. Had I known what happened to him they might have been able to do something sooner. Instead it took days to find out what happened to him. Doctors had no hope; he would not survive. I refused to believe, I prayed, I was not giving up and neither was Jonathan.
Jonathan spent two long months in the hospital recovering. He was left with severe physical and mental disabilities. He was diagnosed with Spastic Cerebral Palsy, a condition that limits his use of both legs. His vision and speech were also affected; he is non-verbal, and has limited vision. Jonathan has spent countless hours in physical, speech, and occupational therapy in school and out. He has received Botox injections to both legs. He participates in equine therapy as well as aquatic therapy, which he loves. Progress has been slow and hard won, but we appreciate each little victory thanks to the therapists who work with him every week.
We believe he is ready for more, and Intensive Physical Therapy will greatly benefit him.

He is not ready to give up and neither am I.

Nancy

Photos courtesy of Jeramie Lu photography

Wow right!? In the brief time that I have known Nancy, it was obvious that she will do anything for her son. She is soft spoken, shy, and so sweet. She is also incredibly strong. Her story is tragic, and she could easily sit back and wallow. Instead, she fights. She has pursued every opportunity available to get help for her son. They have already raised more than half of the money needed for Intensive PT, and Jonathan is signed up to start in July! Now, we are going to help them finish the race.

I thank you in advance for all of your support, not only to my family but also to others like mine! I am so glad you also see the importance of supporting our unique families. Just a little encouragement fuels the fire needed to keep going on those very hard days.