Sunday, March 4, 2018

Sharing the Love for DC... and Fragile X Advocacy!

It’s early March and for the first time in many, many years I am sitting alone in the airport on my way to DC. In the years that I have been doing this (please don’t ask me how many, math isn’t my thing, not to mention it ages me), I’ve been fortunate to bring people I love dearly along for the experience.

The first few years I came alone, which was scary as heck that first year, which was probably the very best thing for me. It allowed me to hang out with other parents, clinicians and family members from the Fragile X Community who knew DC pretty darn well and through our late night walks through the city, I fell in love with the place I was once terrified of.

I had been to DC once before with my family the summer between 6th and 7th grade, I think. Our family vacation had taken us from Illinois to Alabama to Florida to Virginia to DC (driving. I can’t even fathom that today!). DC was chaos and scary. The hotel had bullet proof glass at the check-in and easily 5 locks on our door. We were all a bit panicked. We spent hours at the Vietnam Memorial, which was newly opened to the public and the real reason we were there. It was amazing. Breathtaking. Emotional. Gut-wrenching. Heartbreaking. It was all of the feels possible wrapped up into one and left memories of how therapeutic and heartbreaking it was for my dad. It was old friends, with their names on the wall. It was new friends made from the thousands of people that were there, arriving strangers, sharing stories and tears while helping find names on the wall to etch. I don’t remember anything else but I’ve been told we saw other memorials too. I remember my mom wanting to go to the Smithsonian. We took a family vote and decided that we were all too scared to stay in this place any longer. I think my mom’s heart broke a little when we left instead of staying the extra day. Also, something that remained engrained in my mind.

So, safe to say it took some convincing to get me to go back but I did, for Advocacy Work for Fragile X. It’s amazing the things I’ve done in the name of Fragile X with the hopes and dreams of making a difference because, trust me, none of it came naturally to me.

This solo trip flying to DC and meeting up with other Fragile X families I had met through the listserv (It was our social media back in the day) and at conferences – so, while the flights were alone, my time there was surrounded with incredible people who remain my friends today. We walked for hours, truly in the middle of the night as it was the only free time we had, through the city. I saw and fell in love with every monument, truly understanding their beauty and our history way more than before. I also felt safe. Incredibly safe. Between the friends, feeling safe, the sights and the intoxicating work we did on Capitol Hill, I was hooked. I was in love with Washington, DC, it’s history and the work we were doing.

Over the years, I have been fortunate enough to bring my mom with me, multiple times… at least 3, maybe 4? 5? I don’t remember the number as much as I remember how excited I was to walk with her all over the city and see as many of the Smithsonian Museums that we could get through. It was almost a sense of relief, to be able to bring her back and experience DC the way I saw it now and for her to be able to take in all of the sights in addition to doing the advocacy work for Fragile X that I loved so much. She's a natural advocate and her extensive medical knowledge is always helpful in meetings.

Between the times of taking my mom, I finally talked my dad into going with me. I promised him he didn’t have to do the advocacy part, I just wanted to take him around the city. I wanted to take him back to the Vietnam Memorial and show him the beauty that is DC. We had an incredible (and sometimes tearful at the Wall) experience that I cherish. And he totally rocked the advocacy part, too!

The last 2 years though… those have a special place in my heart because Allison came with me. I couldn’t wait to show her the city. She shares my love of history and was as excited as I was. We came for 5 days (both times) and my mom came with to take Allison out in the city while I was working. Last year, we brought her friend, Paige, along too. Sharing the city I loved with Allison and watching my small town baby girl fall in love with the big city experience was incredible. If nothing else would have happened during those 2 visits, I would have been happy. But so much more happened.

While Allison had seen me give a few small talks on Fragile X, she had never seen me at work, or addressing a large crowd, or bonding with other families. She met the people I work with, the families I talk about and was excited to spend the day on Capitol Hill. But, that was just a tiny bit of the so much more that happened.

What happened for Allison in DC was the same thing that happened for me so many years before. She found her voice. She led and did the majority of the talking through many of our meetings. She would explain what Fragile X is, how it impacts her brother, cousin and our families. She rocked the advocacy thing and I could not have been more proud.

During our tour of the Capitol building with Congressman Gregg Harper (who also has a son with Fragile X), she asked him to take a selfie with her. That was a first but not the last. The repeated the selfie on her return trip.

She sat in the chairs of the house floor while learning all about the history, how members cast votes and where Moses can be found. She watched Senate proceedings from the balcony, saw the Supreme Court with a guided tour and took in every monument there is. She has walked through many of the Smithsonian museums, toured the Ford Theater, watched the changing of the guard at Arlington and everything else we could squeeze into our time.

Our time on Capitol Hill gave me a glimpse into the amazing young woman she has become. She’s always stood up for others and is her brother’s best voice. To see her take in everything she has heard over the years and pull it together into gracefully explaining Fragile X to our Members of Congress and their staffers, left me in awe. Saying I was (am) proud of her feels so understated. It was of those times, where I stood back and thought, “You know, maybe I’m not completely screwing up raising her. Maybe her brother has brought as much into her life as his disability has taken away. Maybe, she will be the voice that changes our world.” It’s left me crushed not to have her by my side again this year. 

Missing days in High School is just not something that can be done. It breaks my heart a bit but I appreciate her dedication to her academics.

This year, I fly alone. No mom. No dad. No Allison. Just me. And maybe it’s what I need, again. At least that is what I keep telling myself as I await my final flight into DC feeling like a piece of me is missing.

While I look forward to returning to the city I love, seeing my fragile x family and advocating, a part of me will be wishing she was here and hoping she knows through the 8 million times I’ve told her how proud I am of her. I know it’ll be a great and productive visit but, I’m also 100% sure that I won’t meet anyone who shares her love and excitement for riding the Metro, Caleb excluded.

I miss you, Lou (Allison). I hope I am able to carry your voice through to our meetings until you can return with me again. I am so incredibly proud of you!!!

Saturday, December 23, 2017

Coco... and the most beautiful things.

I wanted to write this as soon as we returned home from the movie… a couple of weeks ago, but life – it tends to have other things it wants to consume my time with. The upside to the delay is I’ve thought of these moments every single day since each time warming my heart a bit more and reminding me of the truly important things in life. I hope it will you too.

Parker had been begging to see the movie Coco, so we took our first opportunity we had to take him. Rarely is our life ever as simple as “here is the plan” and it happens exactly accordingly despite our best efforts.

The kids and I drove over to the comedy club to pick up Dan, we were early as we wanted to catch the Bears game and Joe the drum guy was coming to pick up his drum set that Greg Hahn had used during his shows that weekend. Not to mention football is way more fun with more people around!
After the game, we said our goodbyes to Joe and were off to the theater. It was a bit later in the day than we planned (because *someone* *cough* *mom* miscalculated the time the game might end) and the Bears had lost so to say we were “edgy” is an understatement.

When we arrived at Willow Knolls, Dan bought tickets while the kids and I went to the concessions stand. As I scoured the menu I didn’t see the one thing Parker wanted… a pretzel. I was sure they had them but through the flashing menu of items (seriously annoying), I never saw it. So we ordered Nachos (no cheese, he is MY son) as our back up. As I paid for the food and passed it out, it hit. Anger. Frustration. Verge of a nasty meltdown. He “didn’t want the damn nachos”. 

I quickly passed things to Allison with the instructions to move down to the end of the counter, protecting anything from getting thrown. I held strong my space in line as I walked through every other option with him despite the cashier (understandably) wanting to help who was next when Dan made his way to us.

Each time I’d step closer to Parker, he’d get more upset. As I glanced around at the number of people (about 15) I mentally prepared myself for the ugly and likely physical meltdown that was about to go down when Dan stepped in between us and reached for Parker. I held my breath anticipating the worst and prepared to offer the option of going home when Dan reached his arms around Parker and they embraced in a super squeezy hug. Sniffles ensued from Parker as Dan quietly and calmly talked him through it.

The manager approached me, asking if he was autistic. I said, “He has Fragile X Syndrome which is very similar” while he was talking I kept scanning the menu board rotating with options when I noticed a couple of screens down “pretzels”. Annoyed that not every option is on one screen, I excused myself and stepped over to the counter and ordered a pretzel. When it arrived, I walked over to Dan and Parker and said, “Look what they have!” And just like that, our world was right again.

The manager, whose name I am disappointed I did not get, had offered to turn the sound down on the movie for us and keep the lights up even though we were not the only ones attending the movie to make it more comfortable for Parker. I thanked him so very much for the offer but explained this is why Parker had his headphones and we would be ok. I thanked him, again, for his help and patience and we hurried to the movie. While I thanked him at the moment, I would have loved to have gotten his name and thanked him more formally for noticing and not being put off by our challenge but offering to go out of his way to make it better. To thank him, for understanding and accepting us, challenges and all. I am so thankful and grateful. That is not always the response we get, it was a very refreshing change. 

As I watched Dan and Parker walking down the hall in front of Allison and me, I fought back a couple of tears. I knew if Dan had not been with us, this would have ended completely differently, and we would not have made it to the movies. As I’ve done many times in our relationship, my heart filled with extreme thanks for him and his bond with both of my children. I also knew that we had not yet made it into the theater so going home without a movie was still a possibility. The lights would be down as we walked in and we would need to find our seats in the dark. It was an “I underestimated the power of Dan” moment as Parker followed Dan’s instructions to walk quietly in and find their seats with an outstretched hand to hold and offer comfort.

With one preview left, we made it to our seats without missing a thing!

I honestly did not know anything about the movie as we walked in other than Parker really wanted to see it. I knew it involved dead people and spirits and it was animated but that was the extent of my knowledge. Oh and that Allison was annoyed it didn’t come out closer to the day being celebrated in the movie 😉

I don’t want to give much away about the movie because I think you should go see it yourself, as it is one we highly recommend, but I need to give a tiny bit of details on what it was that made this movie experience like no other for us. (Even though I want to tell you in detail everything about it – we enjoyed it that much!)

The overall point of the movie is about remembering loved ones who have passed and what happens when no one is left to remember them. It’s about family and memories and keeping “alive” those who have passed. (among other things that are more upbeat and fun).

As we sat watching… Allison, Dan, Me, Parker (in that order) … there was a part of the movie where the little boy was trying to get his great-grandma to remember her father. She was very old with not much time left herself. She had not spoken that I could remember during the movie to this point.
As the little boy kneeled by his great grandma’s side begging her to remember someone, knowing what would happen if she did not despite his family telling him to stop, I noticed out of the corner of my eye Parker raise his hand. As I looked over I noticed he was wiping away tears. With tears in my eyes I nudged Dan and with that, the 3 of us were wiping away tears.

I have never seen this from Parker. He gets very into movies we see in the theaters and shows his excitement and even concern, often asking questions if he wants to know what will happen but this time… this was different. There was no talking. There were no questions. Just tears. Tears of understanding the importance of the great-grandma remembering her father. Tears of understanding they would never be reunited if she forgot him.

I kept saying to Dan “He’s never done this. He’s never cried at a movie. He’s never been touched like this.” Dan already knew. Together we cherished this incredible moment. A moment I knew would have been missed without Dan by our side and a moment, as a mom, I needed to see.

Tears. Understanding. Emotion. From my 18-year-old son with Fragile X Syndrome.  Very intently watching, waiting and encouraging her to remember. It was one of those moments impossible to put the feelings of into words but something you felt with every ounce of your being.

I won’t tell you what happens next, but I will tell you that as soon as this movie is out on DVD, we will be buying it. The message is incredible, the story very well told and the memory of the impact it made on my son… tremendous.

I will say the overall point of this movie, which taught me something significant about another culture, was the importance of not just remembering those we’ve lost but always telling their stories, keeping them alive not just our memory but in the memory of other generations – even if they did not know of them. I was not familiar with the Mexican tradition of the Day of the Dead but find it incredibly beautiful, meaningful and am a little confused as why we don’t all do this. I know we all remember, daily, in our own ways but a special day to focus on those we love in a big way… that’s truly beautiful.

My reminder to you, keep sharing those stories. Keep the passing down the stories, the pictures, the memories from generation to generation. While no one knows what comes after life has ended, we know our love never ends. It doesn’t have to stop with us, keep your loved ones who have passed alive for generations to come, not just because they deserve to be remembered but because we are all better for knowing and celebrating those who were here before us.

And my reminder to me, my daughter is an absolute rock star who can understand our needs with very few words from me. While I hurt that this is her “normal” to see the possibility of our plans change on a whim, her understanding, empathy and ability to handle things – including disappointment – is well beyond her 15 years. She is my rock star. My son is always full of surprises, his ability to adapt and regroup has grown by leaps and bounds. And what’s going on inside of that mind of his that we don’t always understand or anticipate is never to be underestimated. And of course, that our life with Dan is something that was meant to be. To have someone who is unfazed by a public meltdown and even better able to prevent it from going full meltdown with the ability tell me to step away and let him handle it is something dreams are made of and more truly what unconditional love looks like. And to myself, the hardest thing of all, it’s ok to trust someone enough to help Parker through his challenges and step away until they are ready for me. (Thanks, Tim – “line 2”).

Because of all of this… leads to amazing and unpredictable moments that forever touch your heart. 

This holiday season and always – take the time to remember share those stories. Keep the memories of our loved ones alive. Without them, we would not be who we are.

And really…. Go see Coco!

Friday, November 24, 2017

Giving ThanX

I’ve been “writing” this in my mind for a couple of weeks. My plan was to pluck it from my mind on Thanksgiving, put it into my blog and share it with the world. Then, life happened. Including probably one of my top 3 worst parenting moments followed by ringing ears and a massive headache leading me to bed by 6:30 pm.

Let’s be fair though, when I say “life happened” it means “Fragile X came out for a visit and won” robbing my sweet 18 year old son of his laughter and happiness and replacing the best of him with demonic yelling and full-fledged anger faster than early bird shoppers ransack a store on black Friday. If you want a blog on the ways living with fragile x can suck, I can likely write you a new one daily, on some days a new blog hourly. But… that’s not what I’m writing about today, nor is it what I want to write about or discuss – at least right now.

I want to share with you the reasons I’m thankful to have Fragile X in our lives. Yes. There are things I am thankful for. Every day.

Just like with everything in life, it’s easier to focus on the negative. “I don’t have enough money to pay my bills” versus “I’m thankful I have enough food in our cabinets to keep my children fed and the power on.”

It can be easy to look at my life and think “My son can’t adequately communicate with me.” Or “My 18 year old son still needs assistance in the bathroom.” Or “I wonder if that last meltdown left me with a concussion.”  Yet, it’s not that way at all. In fact, it’s the very opposite.

While I do not wish this life on anyone, I do appreciate every single inch stone along the way (think “Milestone” only smaller and celebrated in much bigger ways) and see the “perks” to the life we live. Most of all, I reflect daily on the amazing parts of each day and my life and realize  - even when  do not get it all right – I’m pretty darn lucky to live this life.

Because, Fragile X, in many ways has been a gift. And for that, I am thankful.

While the most obvious is my children who are truly the Rock Stars of my universe, there are is so much more!

For example, my very best friend in the entire world. If it were not for Fragile X, there would not be a Melissa and Holly (gasp) just take a minute to let that sink in! Some people go an entire lifetime without having someone they can trust with their entire life, who will lay in bed with a computer screen on facing them with Skype on so that they can be there to fall asleep with you on your most challenging days while you cry yourself to sleep because they live too far away to be there in person. Melissa is just that. She is my person. She is the one who has no trouble reminding me that I am only a superhero in our tattoos, not in person. That in person, I am human. I’m allowed to make mistakes, I’m allowed to say no, I’m allowed to stop and slow down and I’m allowed to be …human. (not as easy as you would think – and quite honestly, I doubt I would believe anyone other than her.) She’s the one I admire, the one I plan to grow old with and the one who I’d trust my children to. She’s the one I waited over 30 years to find. I am thankful, beyond meaningful words, for her. And her family, they are a package deal and I adore them all.

I am thankful for my close knit group of Fragile X moms who span the globe. You know who you are 😊 You are the ones who get late night emails, who know that pizza can be worth celebrating, who will try to fit yourself in a suitcase so we can be together. You are my sounding board, my mentors, and my reminder to believe in me. I am thankful for each of you.

I am thankful for this crazy family I had no idea I was a part of until 2003 – my Fragile X family, filled with the most amazing information, the occasional spike of drama and best of all unconditional acceptance and love. From IEP’s to Guardianship to Independent Living you are blazing new trails and pouring cement on the ones already paved. We celebrate together, laugh together, cry together and mourn together like only this specially bound family can, always offering unending support. We learn so much from each other and support each other in ways a family should, all thanks to one common gene mutation. I am thankful for all of you.

I am thankful to be a part of the Special Olympics family. Without Fragile X, I would not have known of this tremendous organization and the opportunities they provide. I’ve witnessed true sportsmanship, pure competition and the greatest support for every single person playing – plus gained my Special Olympics family. I am thankful for these experiences.

Because of Fragile X, I’ve been able to travel quite a bit throughout the US and even to Canada, sharing our Fragile X journey and empowering others. From our local schools and colleges to universities packed full for a lecture – I’ve been thankful to have the ability to make a positive impact on others by sharing a piece of each of us. I never knew I had this independence inside of me (me, the small-town girl who had never checked herself into a hotel, hailed a taxi or attempted to navigate public transportation can now do it all!) and I am thankful to have discovered it. I never knew how much I would love traveling and now can often be found daydreaming of places I’d love to visit. I am thankful for these opportunities where not only have I been able to help others but have also found strength and something new about myself.

I am thankful for the patience and negotiation skills that Fragile X has given me. While not always perfect, I certainly have come a long way – and for that I am thankful.

I am thankful for the humor that Fragile X brings out in my kids. From Parker’s slapstick humor to Allison’s sarcasm it truly is the greatest and keeps laughter front and center in our lives.

Of course, I am thankful for my family who love and support us. While I believe that goes without saying, it’s always better to say it. I am so very thankful for my family.

Fragile X has brought out the best in our community. From the incredible friends who surround my children to the business who support our fundraising to the people who are always here to learn more and do anything for my kids – I am thankful. You remind me on a regular basis of the very best our world has to offer and do so effortlessly. I am incredibly thankful for this amazing community and all who live here.

I am incredibly thankful to the teachers, para-pros, therapists, and all employees of our local school district who have put their hearts into making sure that my children have the most appropriate education – who have gone above and beyond and who remain a part of our lives today. Honestly, it started with the birth to three program and our educational/therapy family has only grown since those earliest of days. I am truly thankful for each of you, your dedication and commitment in professions that are always underappreciated. Each of you are the ones who deserve to make millions. Did I mention yet that I am thankful for each of you? Because I am. And without Fragile X, I would have never known of your amazingness – another reason to be thankful for it.

I am thankful for the extended family’s who have welcomed us in and consider us a part of their very own. Both Jen’s family and Dan’s family have welcomed our crazy Fragile x lives into theirs, embracing us as though it’s exactly where we belong… possibly because it is. You never looked twice or reconsidered, you just loved us, Fragile X and all – for each of you I am thankful.
Fragile X has made me who I am today. It’s hard not to be Thankful for that. Fragile X has not only brought 2 amazing children of my on into my life but thousands of others who I love dearly and have the privilege to watch grow up – all around the world, holding a special place in my heart for each family.

Fragile X has given me strength, knowledge and an incredible invitation into a world I did not know was there, filled with dedicated (and seriously awesome) professionals (who I am also thankful for), amazing families and the best self-advocates in the world.

Fragile X has taught me to be an advocate, provided me with patience and reasoning that extend beyond our home. It has provided more education than any school could into topics I did not know were even a part of anyone’s life while reminding me it’s ok to fail as long as I try again.

Fragile X has given me my voice and the ability to not only be the voice of others but to teach people how they can have a voice and make a positive difference too. That’s a pretty strong gift that I’m incredibly thankful for.

Yes, Fragile X has “taken” things from our lives that we will never get back and there are moments it’s easy to let that weigh me down – finding reasons to be Thankful for Fragile X are always there to make the day brighter.


Wednesday, November 15, 2017

Empty Hallways

Every ounce of me attempted to fight back tears as I tucked Parker into bed tonight. I failed. I succeeded at not sobbing but there was no stopping the stream of hot tears running down my face. He asked what was wrong, I simply replied "Sometimes Mommy's cry" which, is true. As he hugged me, I let my head sink onto his shoulder and asked him a few questions about school. None, of course, that he would answer.

I knew that. I knew that it was a pipe dream thinking he would be able to tell me the answers to all of the questions swarming in my head... or realistically even just one of them. The last couple of months I've been flooded with emails, Facebook messages, calls, and text from concerned students and adults. I stay in very close contact with his teachers so while I felt like I had a handle on it, today's texts tipped me right off of that tightrope I was walking.

"Is someone being mean to you, buddy?" I asked. An incredibly quick and defensive "no" was shouted back at me as his body went completely rigid.  The simple translation of that one. Yes. Figuring out the rest will take a lot of detective work. Not new to me, just disappointing.

I changed the subject and had him laughing before turning off his light and saying "Goodnight". As I walked out of his room, I looked at the pictures framed by his door of he and his friends in their "Senior" shirts. What's left of my heart these days shattered.

While Parker walked with his class last year and had a graduation party, he didn't technically graduate. He received a certificate allowing him to stay in school through his 21st year. We are working on life and job skills with some academics tossed in. Going back was hard for Parker. The hallways once filled with his friends were now filled with new people. People who are disconnected from him. While there are still friends there and people he knows, it's a very VERY different experience.

The hallways he once longed for filled with childhood friends who included him are now empty.

Those friends have moved on to college, the military or work. Many still keep in touch and see him, which we both appreciate more than they will likely ever know. But... they aren't there. They aren't in his hallways.

While I've noticed the change, it hasn't been until the past month or so that I've realized just how much it's impacted me. Especially on nights like tonight. There was, at any given time, throughout Parker's entire school career at least 5 kids looking out for him at a time. Kids... young adults... who would be willing to throat punch anyone who looked at Parker sideways, let alone give him a hard time (ok, throat punch is an exaggeration but... barely). If something wasn't right, I knew... immediately. I always knew. These kids kept me so in the loop I never, ever worried about Parker. They were more than his friends, more than his protector... they were my eyes and ears, my sanity.

And now, our hallways are empty.

While no part of me would ever want to go back and relive my high school years (even though they were good) I'd give anything to turn back the hands of time and pause them with the class of 2017 altogether... indefinitely.

While I don't know what's going on with Parker yet, I know that not only will we figure it out but we will make it through, together.

I will forever be proud of the kids of Parker's class of 2017 and I love watching them grow as they find their place in the world. I know they will do amazing things. And I hope that as they find their paths, their hallways are never empty but someone is always there with that "I believe in you" smile that they've always had for Parker.

And in this month where more time is spent being thankful, I hope they know how very thankful we are for their friendship and the difference they make in Parker's life. I am thankful for those who stay in touch, for those who continue to spend time with him, for those who endure his 5,000 thumbs up/ok messages a day - and toss in the occasional reply, for those who still light up when they see him and patiently wait for him to come out from hiding inside his shirt and for those who will forever be a part of his life. I am... we are thankful.

While Parker's hallways may be empty right now, we are working to fill them and reminded that almost everyone goes through a time when their hallways feel empty, where they are alone. And Parker, like you, will grow from this. We will make it through.

Tuesday, August 29, 2017

It Won't Make You Cry. That's the best title I can come up with other than #TentacleHand

I have crazy dreams and nightmares on a pretty regular basis, it’s possible a slight factor into why I sleep so little. Typically my nightmares involves… you know what, not sharing that, I’m going to limit my Holly is here to amuse you material to one story, today!

A little back story because I feel both of these play a factor in last nights sleep disturbance (it wasn’t really a nightmare but it scared me enough to wake me so… not really a dream either, I guess).

About 6 weeks ago, after being punctured by the claw of a cat I was playing with I developed a Pyogenic Granulomas. I had no idea what it was at first other than this funky growth on the palm of my hand that oozed and bled all day. Being me, maybe my backwoods country raising that led to my increased curiosity, one day while sitting at my desk working I took the pocket knife from my desk drawer (Oh come on! I know you have a pocket knife in your desk drawer next to your pens and highlighters, too!) and sliced it off. I mean, really, why not? What was the worst that could happen? (

It bled, a ton, for about 5 minutes. Not enough to stop me from working, lol, I MacGyver’ed a bandage out of Kleenex and scotch tape and kept on working while peeking at it periodically to see if the bleeding had stopped. When it was just barely a slightly bloody ooze, I removed the awesome homemade bandage and took a look at this spot. What happened next shocked me. Right before my eyes, it grew back. I kid you not! I was fascinated and freaked out all at once. But mostly, disappointed that it was still there. A few days later, when it was really annoying me, I took the toenail clippers and clipped it right off again - you know because, why not. This time, holding direct pressure on it to prevent it from returning. Yes, failing completely. After a few minutes, I removed the pressure and watched it again grow back.

A quick trip to convenient care on a Saturday morning after a bee/wasp/spider-something sting/bite took over my arm, I showed the medical person working my hand. She was completely freaked out. You know what always makes you feel awesome? When you freak out medical personnel with an object growing from you hand that they don’t even want to touch and quickly tell you they’ve “never seen anything like it” and have “no idea what it is” before telling you to visit your regular doctor.

That, however, led me to the internet to do some research on this spot that my daughter had now nicknamed “the alien” since it would so quickly grow back, sprouting from my hand like… well, an alien. And that is how I discovered it was a Pyogenic Granulomas, apparently common in pregnant women – something I am not. Pregnant. Still a woman, just not a pregnant one. And a quick call to my Dr. who knew exactly what it was and burned that baby right off! (FYI numbing shots in your hand hurt like a b#tch!)

My hand is still healing.

That’s the first part.

The 2nd part takes much less background. I looked at the eclipse without protective eyewear disappointing practically everyone who knows me yet not at all surprising those who know me best. I didn’t stare at it, I just glanced a couple times out of disappointment through the great cloud cover that it didn’t get dark out like I thought it would 😊

These two quirks of my life I am sure played a significant role in my sleep disturbance but just for fun and your entertainment because it amused me, I’m going to share the dream with you because I know so many of my friends love to analyze dreams... and it's amusing. 

So, here we go… in my dream I was at a family function on with my mom’s side of the family, I’m not sure where we were but it was familiar, maybe the basement of the Lutheran church back home where we have held gatherings… anyway… my hand was bothering me and the spot where the PG was removed. It looked very swelled up and being me I decided to squeeze it to see what happened. What happened next (this was a dream, mind you for those with short attention spans – this was not real life) was bizarre! 

Out of my hand what looked like the tentacles of an octopus were being squeezed out!! (maybe Squidward’s legs is a better visual, Parker has had me watching a lot of Spongebob lately with him)

Flesh colored tentacles with fleshy/clear-ish suction cup sucker things and red berry looking like things on them. The more I squeezed, the longer they got/more that came out.

Somewhere between a state of embarrassed / mortified / fascinated I grabbed the attention of my cousin, Kelly, and motioned for her to head to the bathroom with me. *this should be a sign that something crazy would happen. Not that *we* would ever do anything crazy together but not that we wouldn’t either. As I ran it under water and tried to shake it off, Kelly grabbed some scissors and cut the tentacle things off my hand which caused it to bleed a ton but we felt like we succeeded. Until… they started to grow back. This time, they fell off when I shook my hand really hard making a mess on the floor which Kelly covered up with a rug. *genius*

We knew we had to tell someone as they just kept growing out of my hand so we went to my mom to ask her what the heck was going on. Because my mom is a nurse and knows EVERYTHING. Really. She does. I envy her medical knowledge sometimes. Amazingly up to this point, Kelly and I were completely calm and, well, incredibly amused.

When I got to my mom, I took the towel off of my hand, dangling these tentacle things in front of her face asking her what the heck was going on with my hand.

Very calmly she said, “It’s nothing, Holly. It’s just a sign that you are going blind.” And then returned to talking to my grandma.

I was like… Whhhhhhaaaaaaaaatttttttttttt?!?!!

Which is when I woke up, slightly panicked but still with vision.

NOW, to add a twist into this… when I work up this morning, an hour or so after this – and this is real life, not the dream – I go into the bathroom and look into the mirror, thinking wow, my right eye is kinda hurting… and notice that my the right half of my right eye is completely bloodshot! Seriously. It’s so hot. *eye roll*

So, there you have it, folks. Real life, dream, real life. Welcome to the world of Holly 😉 At least no one can say this entry made them cry!

If you can't laugh at yourself... you shouldn't be laughing, right?

Friday, August 25, 2017

Our magic number... 25.

Now and then I’m asked that one question that I’m yet to answer without tears welling up in my eyes, often catching whoever curiously asked completely off guard.

“What’s the hardest part about raising Parker?”

I’m sure many would guess my answer would be his aggression, anxiety, maybe the battles with the school over the years, waiting years for him to talk, or maybe even watching his peers move on in life but all of those are wrong. They aren’t easy but certainly not the hardest part.

The hardest part is a simple, two-word answer that I can’t even type without tears. “The future.”

Right now, through the very best of days (which we have a lot of – Momma’s of littles – hang there, way better days are ahead!) and the very I wish we never had moments that are not so good, I have the ability to protect him. We have our very happy, sometimes quirky, routines and life. It works, very well, for us. And, quite honestly, I would be very happy and content doing this forever.

But, I can’t.

Shortly after Parker was diagnosed I read a story. I can’t remember if it was in a local newspaper or through a link online to a magazine like “Woman’s Day” or something. It was a long time ago. While I don’t remember where (although I wish I had saved it) I remember exactly what it was about and it forever changed me.

It was the telling of a family who had 2 sons with intellectual disability. Their entire lives they lived at home with their parents. They had, no doubt, a great life. There was no question to how very much they were loved. This was, however, all they knew. One day one of the parents died, I think the father but it doesn’t matter, and while extended family expressed concern the living parent refused to move the now elderly adult sons into a home.

The men were in their late 60’s. The parents in their late 80’s. A few short months after the first parent died, the only person left in their life - the other parent - died too.

Within 6 months these 2 men with intellectual disabilities who had only known one home and one life under the care of their parents, had lost their entire world. Everything. Both parents were gone.

The men were placed, together, in an assisted living facility. It was an incredibly challenging transition that took its toll on the multiple places who attempted to bring them in and on the men, themselves. They had no idea how to function without their parents. They were thrust into a world they did not know and could not understand.

The story didn’t have a happy ending. No great tale of how the men adapted and thrived. It continued on chronicling their ongoing confusion and struggles. It never ended. They never settled in and found a new routine and life. They simply survived, barely, at best and not for long.

The article took all of the air from my lungs. I could not breathe. I could only cry. I knew what this meant. 

Up until that point, I had said, adamantly, to everyone that Parker would live with me forever. And at that moment, I realized,  he could not. There was no way, no way at all, that I would ever do this to him. No matter how much I want to protect and shelter him, I cannot keep him from the world but, instead must teach him to survive in it and thrive, successfully without my by his side.

It was then - early in his diagnosis that his dad and I came up with the magic number “25”. That by Parker’s 25th birthday we would be sure he was living as independently as possible outside of our home.

25 felt right. At 25 he would still have us as a safety net. We could make the transition slowly and find the best place for him. It would be like going off to college like his sister will be doing. And most of all, we would be able to see him be successful, on his own (however that would look, likely at a residential facility) and know that when the time came and we were no longer here, he would be ok.

It’s a plan that we’ve been set on for what feels like forever, without any doubts or uncertainties of this plan.

And then… he turned 18. His class graduated high school and I was granted guardianship. Suddenly 25 feels way too soon. Not because he won’t be ready, I will be sure he is but because… I won’t be.

Being Parker’s mom is being his caretaker. It defines me. And I’m good with that. But really, it’s all I know. I don’t know how to function without helping him through each day. I’m lost when he’s with his dad or at camp and I am not tying shoes, tucking him in at the end of the day or reminding him to have patience because I cannot jump at every command… and despite his protest he can do some things himself!

Making that leap at won’t only change Parker’s life, it will change mine. In a major way. And part of me does not want that at all. Not even a little.

The thought of him living away from me with someone else caring for him, tying his shoes, telling him “goodnight” is a bit – ok, a lot – heartbreaking to me.

And I know what some of you are thinking, “Why can’t he just stay with you and then go live with Allison after you are gone or  too old to care for him?” And, in all fairness, Allison will tell you that is her plan. He also is blessed with 2 pretty awesome step-sisters now who may also feel the same way and want him to reside with them. But, the reality is, it’s not fair and it is not an expectation that I (or Scott and Jen) have for them.  Parker is not Allison’s responsibility. She will have her own life too. While I fully expect her to always include her brother in many things, I also expect her to live her life to the fullest. The same for his step-sisters. I’m not completely sure it would be fair to Parker either to have to live with his sisters, even knowing how very much they love him.

If, many years down the road, they decide this is what they want – they will have our support. But, it’s not something we are planning or expecting.

Lately, I’ve been struggling with that magic number we picked (and I have to say it’s “by” 25 – if something perfect comes available before age 25 and he’s ready – in no way would I hold him back. I would cry a lot but I would do what is right for him because that is the most important.) subconsciously talking myself out of it a little more each day.

Then, unexpectedly, I was reminded why it’s so important to me to have a magic number.

The film Mimi and Dona crossed my newsfeed. It’s a documentary you can watch for free until September 19th through this link – I highly encourage you to watch it, with Kleenex in hand.

Mimi was 92 when she accepted she could no longer care for her daughter, Dona (in her 60’s), and placed her in a residential facility at the urging/demands of her family. It was the hardest thing she ever did. Not only did she say it but you could see it in her face and hear it in her voice. No part of her wanted to do this and she very desperately wanted to bring her home.

“You don’t know what it’s like to say goodbye to someone” she said to her family. And she was right. Those words were so true, so powerful and so very much from the heart. No matter how much you love your sibling or relative with a disability and can see from the outside what appears to be the “right” decision for them, you don’t know and understand the pieces that hold our lives together. It’s always easier from the outside.

What I saw was likely different than what her family who was urging her to leave her daughter at this facility saw and heard. “You don’t know what it’s like to say goodbye to someone.” Was much bigger than saying “goodbye, I will see you soon.” Not only was Mimi having to say “goodbye” to her daughter but to the only life she had known for all of Dona’s life too.

She was leaving a huge piece of her heart behind. The guilt, the worry, the anxiety, the helplessness all stayed with her while her heart and her love slowly faded away in the distance. She also knew that her relationship with Dona would never be the same.

This was more than just saying “goodbye” until next time. It was saying “goodbye” to everything she had fought for and known for over 60 years.

It meant starting over, for both of them, with broken hearts.

While I don’t want to give away the entire movie, I do want to point out that the decision did not end well. And while it was never said, I can tell you as a mom who is also a caretaker, that a part of Mimi – no matter how good of a person she was – never forgave those who forced that decision on her for Dona to move. It didn’t have to be said. It’s simply known. I would never be able to forgive anyone who forced that decision on me that led to that outcome. (Yes, an outcome that may have happened regardless but there is no way to know). Maybe Mimi is significantly better than me, forgiveness isn’t my strong suit. But I know it’s a heart ache and anger I would take to the grave.

*Side note – I saw so much of me in Mimi and so much that I strive to be. She was so filled with love and fought so hard for her child… I have so much admiration for the incredibly woman she clearly was.

The movie, again, like the article I read so many years ago took all of the air from my lungs. It left me gasping, unable to breathe.

It made me realize that I have a magic number for a reason. Because if I don’t 25 will become 35. 35 will become 45. 45 will become 55… and eventually, we will be in the spot Mimi and Dona were in, where the family I mentioned early were in – where Parker and I would live in a bubble unable to survive without the other.

And that is not fair to him. And some would argue to me.

I know that many of my friends just sent their kids off to college or off to the military. And while I cannot imagine how that feels, I know that their children can tell them absolutely everything. Whereas my son, cannot.

While it’s a comparison many like to make, the reality is it’s different. I won’t be sending him off to college and welcoming him back when he’s on break… or can’t find a job and living in my basement until he’s 35….  I’ll be sending him off to find people to try to love and care for him as much as I do. To protect him. To keep him safe. To love him unconditionally. To show him the world and also protect him from it.

I’ll be looking for the impossible but I am determined to find it. Or create it.

I won’t know if he’s had a rough night. I won’t know if he’s scared or had a bad day. I won’t know if someone is abusing him or taking advantage of him. I won’t be there to protect him for the ugly in this world.

I won’t be able to fully explain to him why he can’t live with me forever like he wants to right now.

I’ll have to trust strangers. I’ll have to set up systems to check in. I’ll have to be vigilant and do all I can to help him understand how to protect himself or report others. 

I’ll have to walk away when he’s crying for me to stay. I’ll have to hear his anger when I don’t go pick him up on a whim and bring him home. I’ll have to re-learn how to live without being his caretaker full time.

I’ll have to learn to trust which is, very simply, something I do not do at all. Ever.

This will be the hardest part about raising Parker. Letting him go. Letting him move on with his life without me as his full-time caretaker. And then trying to find out who I am without him always by my side.

While it will be the hardest part, it’s also one of the most important parts. Parker loves being with friends. He loves the independence he is gaining. He will thrive. He will do exactly what I need him to do… he will prove to me that he can live life successfully without me by his side.

He will show me happiness. He will show me pride. He will show me new friends. He will show me new experiences. He will show me that all of the sleepless nights, all of the IEP’s, all of the pushing of boundaries, all of the research I did had a purpose.

And while it will be possibly my most challenging task ever, I will figure out who I am beyond his caretaker as well. Who knows what’s waiting ahead for us both but I know we will find out before I’m ready.

My heart broke for the family I first mentioned and for Mimi. I cannot imagine the pain. Please understand, I do not judge them. I believe they did what was right for them at that time in their lives. I believe the felt this was the very best decision for their child/ren and family. And, maybe it was. I simply respect and love them for being such incredible parents.

I also appreciate their stories being shared, reminding me that this path isn’t the right one for us. I cannot keep him with me until I am no longer able simply because I am not ready to let go. If I was his entire life and suddenly gone, all of the work and progress we’ve made would have been for nothing. It would turn his world upside down in a way no one would be able to fix. I cannot do that to him and I won’t.

So, our plan remains solid. It’s one that will benefit Parker the most. And in a few years when we reach that point, I know he will absolutely shine and build bonds that will carry him through the years that extend beyond me.

I know this is a challenging subject but one I hope you take time to think through. This is just our plan. It what we believe is most appropriate for Parker. It does not mean it is the right plan for everyone (or anyone) else. My request is that you think through the future and what will happen to your adult child if you are suddenly no longer here and if there is a way to prepare them for success while you still are.

This is the hardest part about raising a child with a disability. The future. The decisions are not easy. Learning to live again without caring for someone who carries your heart 24/7 will not be easy either. No one understands how hard it is to say “goodbye” yet at the same time, some of us have a pretty good idea.

Love and hugs my friends. This journey is not always the easiest but it’s also not one we travel alone. 

Thursday, August 17, 2017

Because... he remembers everything!

This past summer, on more than one occasion, Parker completely caught me off guard with something he remembered. I've always known and reminded everyone that his receptive language was amazing but because he's lacked the expressive language to be able to say what he knows, it's made for some doubters.

This summer though... even I was amazed.

I had to break the news over the summer to my kids that Aunt Heather had to put their dog, Gus, to sleep. I was a bit more focused on Allison because I truly didn't think Parker would really care - he's not the biggest fan of dogs - but he did. And he had questions.

P: "Bury him?"
Me: "Yes, they will bury him" (they live on 22 acres)
P: "Next to Emmy?" (our dog who died 9 years ago)
Me: "What?"
P: "Next to Emmy. Emmy died. Hit a tree. Bad rabbit."
Me: (with tears) "You remember when Emmy died?" (he was standing next to me when she came running out from behind the shed chasing a rabbit and hit a tree stump head on, instantly killing her.)
P: "Yes"
Me: "What happened?"
P: "Emmy chased the rabbit. Hit the tree. Died. Called Grandpa John. Dad working. Called dad, come home in firetruck. Grandpa took Emmy home. Buried her. Put a rock on top."
Me (seriously choking back tears) "Yes. Exactly. That's exactly what happened."
P: "Mom cried. So sad. Poor Emmy died."
Me: "Yes, mommy was so super sad. We have Daisy now though and I love Daisy. That makes me happy."
P: "Bury Gus? By Daisy? Rock on top?"
Me; "Yes, I am sure they will."
P: "By Jackson too." (Our kitten we lost)
Me: "Yes, by Jackson too."

The conversation left me a bit speechless. It certainly took me by surprise and wasn't one I planned on us having... ever, really. But truly left me in awe and happy to know there are memories in his mind, just like the rest of us.

Later in the summer we were driving in Peoria when he kept saying, "Give me your Money!" in a voice I knew was familiar but couldn't put my finger on. I would repeat it hoping it would come to me where I knew this voice and phrase from but it wasn't. So, finally, I asked...

Me: "Parker, who says that?"
P: "Mr. Krabbs. Give me your money!"
Me: "Yes, true but who else... I know this from somewhere else."
P: Thinking for a minute.... "Give me your money".... (Pause).... "Said the BIG BAD BUNNY!"
Me: "OH MY GOSH - YES!!! It's the Big Bad Bunny Book!"

Parker lit up. I used to read this story to him over and over and over and over...because he loved to hear me say "Give me your money" in my Big Bad Bunny Elvis like voice. (Mom of many talents here). And we talked about the storyline of the book for the next half hour or so.

When we got home, we looked for the book but couldn't find it. We'd still laugh about it and often say "Give me your Money" in our made up big bad bunny voice and laugh. And then, last week I ordered it and today... it arrived.

To say he was excited was an understatement. He was elated to see the book and immediately started flipping through the pages.

We read it twice before bed and he told me we could read it again tomorrow. I forgot how much I enjoy reading to him and how much he loves being read to. I would stop at places and ask him to read the words, it was, good for us both.

Maybe I'm feeling a bit more emotional these days because school is back in session or because tomorrow I go to court for his guardianship but having the book arrive today was good for us both.

And a reminder that, yes.. he IS always listening and more importantly, he - just like his sister - remembers EVERYTHING which makes me so proud!