Change is a comin'.

 You know what we haven’t had in a while? A good cry, I’ve been keeping them to myself and it feels like time to share them. It’s good for us, right? Go get some Kleenex because at some point while reading this – you are going to want one.

We have some major life transitions happening soon in our little family of three. And to add salt to the transition wound, I have no choice but to accept that my parents are aging as fast as my children – which is completely unfair.

In my entire life, I’ve never been alone. I lived at home, then with Scott, then with Scott and our children, then with just our children. Never just with me. When Covid hit, without making it public at the time Scott, Jen, and I agreed that Parker and A would stay solely with me. We wouldn’t leave and we didn’t. We isolated ourselves so tightly in a bubble only letting people in through video calls at first, then outside visits, and eventually returning to our post covid routine. But those first 6 months, it was just the three of us, with the full knowledge that if I messed up, all three of our lives were on the line. Nothing throws you into compliance like the words “this will kill your child.”

It was a while longer before we started overnight visits with their dad, again. When we did, the kids being away had become much harder on me. I solved that by spending that time, as often as I could, with my parents.

Then, Willow had her leg injury, which stopped those trips as she wasn’t (and still isn’t) ready to run without further causing injury - post-surgery now. It was around the time of Willow’s surgery that A’s first college acceptance letter came. One followed by another… and another… and another. All four schools that A applied to for all 5 BA programs accepted A and made offers. It was an incredibly exciting time, as long as A was there to share their excitement with me.

But, when they’d leave to go to their dad’s, it would hit me. My youngest, my baby, will be moving across the ocean to another country. And it hit hard. A and I have always been incredibly close and there was no way I was going to stop A from chasing this dream and moving to a place where I know they will thrive, not even my shattering heart would get me to stop supporting this dream of theirs.

Every emotion hits when I let my mind go there. While the responsibility of raising Parker is mine, the quiet one on one time with A at the end of each day when they finally come out of their room is a time I cherish. It is my time to regroup. To laugh, to talk about current events, to share dreams, and frustrations, and, of course, for me to glance over A’s homework once in a while to reassure them that what they’ve written was as good as they hoped. It always is. A has an amazing gift for writing, especially poetry.  A is there when I need an extra hand and truly gets me through each day.

I cannot remember the last time I saw A this excited about something. I’m not worried, I know this is where A is meant to be. I know they will get to truly be themself, spread their wings, and fly – and, make this world a better place. I have every confidence this is the right move for A, even though I wish they just wanted to stay with me forever 😊

I’ve been mentally preparing myself for A’s departure. For every reason I am sad, I can give you more reasons why I am happy, including that it means I get to spend more time in the UK and Europe, too! Traveling is so good for my soul. As much as it will be hard on me not to have A here, I can talk with A pretty much anytime. I can even call daily, even though I doubt that they would answer me that often! So I’ve been settling into the reality that A has this amazing adventure coming soon and I am filled, again, with excitement for them.

Then, the other night, while tucking Parker into bed I reminded him that he is old enough to tuck his own covers in, especially his feet which he uncovers repeatedly throughout the night. I said, “it’s time for you to do this. You are 23.” He quickly interrupted me with “No, I’m 24.” I was like, “Wait, what? No! I am sure you are 23!” He argued with me until I gave up and left. I came upstairs where A and I were double-checking our math to be sure he was actually 23 right now like I thought. 

The sheer panic that hit me that he may have been 24 with his 25^th birthday coming a year before I planned in my head took all of the wind from me. I am not ready, I can’t be ready in just a couple of months, there is so much to do. So, when we confirmed that *I* was right and he is only 23 still, I breathed a sigh of relief knowing my plan was still on track.

While my main focus is currently on A, scholarships, financial aid, student visas, and everything that comes with studying abroad internationally – the back of my mind keeps returning to … “7 months after A leaves for the UK, I’ll be starting the transition of moving me out of this house and moving roommates in.” And while I’ve been taking the “I’ll figure out where I’ll live when the time comes” approach, I knew I needed to start figuring out those options as everything takes time – and I need to prepare Parker for that as much as his roommates coming in.

As I started talking more about Parker living independently (with roommates and caretakers), I mentioned to my mom that I knew I’d have to give him a week or so to settle in before I came to visit. My mom quickly said, “Two weeks.” When she worked as a nurse for a CILA, they recommended two weeks. That was completely fine during the conversation. I would wait two weeks and then I would come to visit him weekly thereafter.

I was fine. I was slightly panicking but, was fine. I was so fine that I left my best friend a 20-minute voice message at 2 (or 3?) a.m. expressing all of my fears through my sobbing tears.

One of those fears is, “What will happen to me?” How do I do this? How do I survive this?

Parents become “empty nesters” all of the time. Some parents even look forward to it. Those parents are not still tucking their 23-year-old into bed every night. They are not giving them a goodnight kiss on the cheek, turning off the light, and waiting for that little voice to say “I love you.” before leaving the room knowing you’ll be back at least 3 more times to adjust covers before you, yourself go to bed and then on really good nights – you get to sleep all the way through but more realistically you are up at least once to put the covers back on the bed. Those parents are not still assisting their adult child in the bathroom, helping with self-care skills, being sure all of the shampoo is out of their hair and those stinky armpits are washed during showers. They are most likely not still financially responsible for every meal, piece of clothing, toy, or activity their 23-year-old is doing. They are not still helping put on socks or having “seat belt races” when you get into the car. If their adult child is living at home, odds are the child is able to help with chores, and not everything falls on the one single parent. Those people are possibly annoyed that their kid is out partying, staying out all night, working, or doing other things that I have no concept of because our life doesn’t work that way. It never has.

Most parents aren’t giving up their home to make it a safe home for their child and others to live and be cared for while finding a new living situation for themselves.

It is the 24/7 caregiving for over 23 years that makes letting go even harder. When I tucked Parker into bed last night after he had spent 2 nights at his dad’s house, I said, “I get to give you two extra kisses tonight! One for each night you were away!” Much to his giggling protest, he let me give him 3 kisses on the cheek before wiping them off and telling me he hates kisses.

That was the moment it hit me. When we make this move, I won’t be tucking him into bed anymore – except when he visits me. There will be no more nighttime routine, no more nighttime kisses on the cheek, no more waiting for that sweet voice to say “I love you.” back to me. There will be no making up kisses for nights we were apart, no re-covering of his feet, no more of him farting to try to get me to leave his room faster. No more yelling for a drink when he is done watching COPS, no more final tuck-in before drifting off to sleep, no more yelling for mom in the middle of the night, or first thing in the morning when he needs help in the bathroom.

It will be silent. No one will be waiting for me to tuck them into bed and kiss them on the cheek goodnight.

No one will spend their day yelling at me, which – at the moment – is Parker’s favorite thing to do. No one else will be holding my phone, telling me where my keys are, or making me match up our schedules with what is on TV at the same time. No more making daily lists of what we will be doing from the time we wake up until the time we go back to sleep. It will all fall on someone else soon.

This brings me to the other point I brought up with Melissa… how will I survive this? How do I go from the 24/7 caretaker to one kid being in the UK and the other living with friends while I adjust to a new space? How am I, the person who struggles with anxiety and depression going to cope?  How am I going to handle the deafening silence that replaces the constant noise of today? I know I am not alone in worrying about how all of this will impact my mental health and how I will make it through. How do I decide where to go next? And how do I know what the right answer is?

Melissa replied with a 12-minute voice message with reassurance and advice only a best friend can give to calm your soul like M does mine. But perhaps the most important thing she said to me was that “we need to give up on the idea that there is a “right” answer to things and accept that “right” answer may not even exist.” And, as always, she is correct.

I’m not the first person who has raised a child with an intellectual disability and then transitioned them to different living arrangements. It happens all of the time, every single day. What I’ve seen and learned from others who have gone before me and most likely the reason I am forcing myself to stay on this timeline, is because their kids have thrived in the new settings. I have absolute faith that Parker will thrive in this new setting, as will his housemates. Who wouldn’t want to live with their best friends? It’s a pretty nice setup!

It’s the impact on the parents that is rarely talked about. Especially when it comes to single parents who have been the primary caretaker. I am sure we will need to increase my medications drastically – to the level of a horse tranquilizer to get me through each day until I can become at peace with the new lives we are living. Unlike A, I can’t call Parker whenever. I can but the conversation will be extremely limited – which is why this house is fully equipped with cameras and I don’t feel the need to do that to A’s dorm 😊 I know I can check on him anytime. And I will only allow people I trust with my life to be caretakers with him. But, it will be the biggest change I’ve made in my life.

The options I’m considering for myself are reflective of many things, and my mental health is top of that list. I don’t do well with putting myself first and I don’t intend to immediately after moving. I was meant to take care of others and I will need to continue to do so to make this transition, even if for the short term until I can see that I’ll be ok with the quiet.

And, I’ll do my best not to add to my domesticated zoo for company for a few years while I am at it.

This next year and a half are going to be challenging for me. I’m incredibly thankful for a job that I love that can distract me and offer plenty to keep me busy and occupied. I’m thankful for family and friends who are happy to be in my company, mostly… usually, anyway. And I’m going to need them.

For the first time, I’m going to likely need more support than I am able to give as I learn to live with an empty nest, putting one foot in front of the other to get through each day. I will lie through my teeth each time someone asks how I’m doing as I say “I’m good/fine/or ok” and hope that I can quickly exit the conversation before I start to cry. I will likely seclude myself for a bit while I figure out who I am when I am not Parker and A’s mom 24/7 and figure out who Holly really is on her own.

I’ll figure it out. I’ll find the Holly that is hiding behind the mom/caretaker façade and she will be amazing, too. And I’m pretty sure that she will spend a lot of time writing and traveling, often found in Italy enjoying gelato and the best pizza in the world when she isn’t busy at work.

Part of me never thought we would make it here. Yet here we are and part of me has realized this is something I’ll never truly be ready for but understand the importance of doing it. It is what is best for Parker, just like going to the UK is best for A. And as a parent, doing what is best for my kids has always been the priority. In doing that, I’ve raised two pretty amazing young adults that I am incredibly proud of.

Now, if someone could please tell my parents to stop aging because I am not ok with that at all and it is a whole additional layer of grief that I am struggling through.

Sometimes it seems like everything in life happens all at once – that is where I am.

My parents are aging.
My children are growing up.

Somewhere in the middle, I guess I should accept that I am aging, too.

It just all happened so fast.

As sure as I am that I am not ready, I can’t think of a lot in life that I have ever actually been ready for. I’ll do my best to do as I always have and lay a new path where there hasn’t been one before, hope that it intersects with other paths that have been well worn before I reached them that I’m able to regroup and learn from, and looking for beautiful inchstones along the way.

A new journey awaits… and it is coming soon.

 

 

The Dentist, part two. 23 years in the making.

A couple of weeks ago, I shared on Facebook that Parker had a successful trip to the dentist for x-rays. I plopped it into a blog to make it easier to read if you’d like to go back and read those details.

If you’d rather not but need to catch up, Parker had been complaining that his teeth hurt. We had prepared ourselves mentally that this would take sedation through general anesthesia in the hospital setting as it has in the past. To my surprise, he did – for the first time ever – the bite-wing x-rays and had an awesome visit (with only the tiniest hint of a possible cavity starting that the dentist would just like to watch for now.) We set up cleaning for today – and that’s where this starts.

Some history.

Taking Parker to the dentist has always ended up with someone (or multiple people) getting bit, hit, headbutted, or kicked. He’s been papoose strapped (literally a straight jacket) which traumatized him and me, held down by multiple people, and still – no one could successfully look in his mouth. He has a very sensitive gag reflex. The only way Parker ever had successful dental work was by complete sedation in the hospital. During that time the dentist got a full set of x-rays, filled a cavity or two, and sealed his teeth. Parker was young, this was easily 10 – 13 years ago.

We knew after multiple failed attempts that if anything went wrong with Parker’s teeth it would take sedation in a hospital setting again. While he did awesome with the x-rays a couple of weeks ago, the plan for today was a cleaning.

A cleaning.

Scraping his teeth with those pointy metal things, picking off build-up and tarter, is a completely unpleasant experience for most people – especially someone who hasn’t had their teeth cleaned in over a decade.

Parker was excited and had been showing everyone how big he opened his mouth at the previous visit and Rylee told him that she loves getting her teeth cleaned, which helped, too. He was ready for this appointment and talked about it daily. He clearly had no clue what he was in for.

Amber, our hygienist, had set aside 2 hours for Parker’s cleaning. The plan was she would do what she could, take lots of breaks, and we’d just go with whatever was working for Parker.

Parker happily went into the appointment, jumped into the chair, and was ready to get started. Amber gave him some glasses to put on to protect his eyes from the bright light. Following my advice from the last visit, she put the heavy apron that is used during x-rays onto him for the appointment.

Ready to rock this appointment!

At this point, I was praying for the best and fully anticipating the worst.

Amber started by lightly brushing Parker’s teeth. This is hard for him. It’s a sensory issue but he did awesomely. She talked him through how to use the suction and we were off to a great start. (I was so anxious each time they did the suction I didn't get a picture of that, even though he did awesome as she talked him through it!)

Then came out those metal scraper things. I cringed just seeing them. Amber talked to Parker as she got started. Parker did well but was struggling to keep his mouth open for so long so she showed him a bite guard and he gave it a try. It worked really well and a lot of progress was made. I took some pictures and short videos and was just beaming under my mask, smiling ear to ear so much my mouth was hurting.

WHO WAS THIS KID?!?

No fidgeting. No complaining. No trying to leave. No trying to bite. It was like I was in the wrong room!

Amber would ask him how he was doing and he would flash her a thumbs up or reply “fine” or “good”. I just stared, taking it all in while completely in shock but also so incredibly proud.

At one point, Amber needed to remove the bite guard, when she went to put it back in it wasn’t placed quite right and he threw up. I leaped into action to catch what I could and keep as much as I could on his blue dental bib. I had Amber hand me paper towels as I cleaned him and around him up. I thought for sure that would be the end of our good dental run. However, after he was all cleaned up Parker piped up and said, “I ate too many goldfish!” and was ready to get back to the cleaning.

Over an hour and a half, slowly, while talking to Parker (and me) Amber managed to clean every single tooth. It was amazing. She was amazing. He was amazing. I’m still in shock. 

Thumbs Up!

The dentist popped in a couple of times to see how he was doing and after Amber was all done, he came in to take a better look at all of Parker’s teeth. He told him how very proud he was of what a great job he did.

Amber offered to polish his teeth today but Parker said “no thanks” he was all done. After such an amazing visit, we didn’t push it. We made an appointment for the end of November where we will do the polish and the x-rays of his front teeth.

Amber and I felt that having Parker return every 3 months instead of every 6 months, even if just for a quick check-up, will help keep him going with the flow that this is a good thing and become more comfortable with going. We will eventually back off to every 6 months and then yearly if that seems like the right path.

As I sat there watching my giant man-boy getting his teeth cleaned, I fought back tears. I hoped for this. I prayed for this. I wished for this. It was like he was a regular 23-year-old at the dentist. Nothing gave off the appearance of a 23-year-old with a disability. Nothing gave off a hint of how challenging our lives can be. It was just… a regular 23-year-old getting his teeth cleaned. 

He did not need me at all. This is the type of independence you wish for. I won't always be here, I need to know that we've set him up to be successful in all aspects of life before the day comes when he has to live each day without us. (*I have zero intentions of leaving this life anytime soon but the reality is no one knows when their last breath will be.) 

I NEVER thought I would see this day. Never. And here we were. It was such a surreal experience. A month ago when we made the first appointment, it was with the hope that we could get him into the office, literally just IN the door so we could get the referral we needed for the hospital sedation dentistry. THAT was our goal. 😔

Man did we sell that kid short.

23 years old. 23. And for the first time, had his teeth completely cleaned without issue. All these hours later, I am still speechless and asking myself if this really happened. It did. It really did and his teeth look spectacular now! *Thank you, Amber!!* He even gave her knucks on the way out. 

I am so incredibly proud. I took him to Wal-Mart for a new inflatable after. I told him all day, right up until I tucked him in at night how incredibly proud I was of him. I am just blown away.

If there is a life lesson in this, it is simply “never stop believing in your children.” I was so sure this would fail, I never even considered making it a goal for him, and yet – look at what he did! Awestruck. I am completely awestruck.

23 years old. No one holding him down. No one getting bit or hurt. Just one, very capable, a young man getting his teeth cleaned by a very patient and dedicated hygienist who believed in him, too. Thank you, Amber, we truly appreciate you.

If only you had witnessed the attempts over the years for this to happen, you'd understand why we were sure he would have to be sedated at the hospital and never made it a goal for him to succeed. Our kids love to surprise us and Parker certainly surprised us and proved to us that he is extremely capable of getting his teeth clean. It was worth the 23-year wait to see him succeed in the way he did.

Oh, and before we left because Parker was disappointed that I didn’t take any pictures of this last time, I took a picture of one of his x-rays 😊 He is fascinated with it.

And now you can enjoy this set of x-rays, too :-)

Do not give up. Never stop trying. Remember, they will surprise us when we least expect it.

Mommy is so incredibly proud of you, Parker! And thanks for being such a stinker that you wouldn't let me take a picture of your teeth after they were cleaned. 😒They look phenomenal!!

Parker and the Dentist - Part 1.

Parker has been complaining of his teeth hurting a lot lately. I looked in his mouth and swore he had 2 back, bottom molars that were black. So, Scott and I started to get our ducks in a row knowing that dental work for Parker means full anesthesia. We needed to get him to his dentist first to attempt x-rays and get the referral.
Parker has a lot of sensory issues when it comes to his mouth and a very active gag reflex. We've never successfully been able to get bite x-rays without Parker being completely knocked out. We have been able to get the ones where the machine goes around his head but they are not as detailed as the bite ones.
Like most people, the dentist makes Parker nervous. We talked about how it was just a check-up, how to open his mouth, and that he needed to let people touch his teeth - and that the hygienist and the dentist were very nice people. His sister Grace had an orthodontist appointment yesterday which I told Parker was a dentist appointment and that she just did this the day before and how awesome she did. (Grace is Jen's daughter for people trying to figure that one out, lol, I am not hiding a child from you - we just don't do "step" in this family. Our children are siblings. ❤ )
I was braced for the worst when we arrived at his 8 am appointment as flashbacks of laying on him to hold him still, being bit, kicked, and hit from days gone by at appointments ran through my head.
I checked him in and while I filled out updated paperwork, he "read" a magazine. I wish I had taken a picture, it was really cute. He hesitated when Amber, the hygienist, called his name but did get up and go with me. He finally agreed to sit in the dentist's chair and was intrigued as Amber showed him pictures of past x-rays.
We started with trying to let Amber look at his teeth. He did ok, I told him that Grace let her look at her teeth, I think that helped some. I'm not sure she could see the back molars but she and I still praised him for the attempt. Then she did the x-rays that go around your head. He simply needed to stand still. The weighted apron they put on you always makes this easier as that heavy weight is our best friend. That went very well.
When we went back to the room. As Amber looked at the pictures and showed them to Parker she said he really needed to do the bite plate x-rays so we could get a better look at the teeth we were concerned about.
Always up for a challenge and always hoping to see Parker succeed at something new, I reminded her about his gag reflex and said "I'm in if you are up for it.". She was up for it. She explained to him what she was going to do, I told him that Grace did this yesterday and did great, he could do it, too.
We all 3 took a deep breath and went for attempt one. It was almost an instant gag for him. He didn't throw up though, so that was a positive. I reminded him to take a deep breath, Amber promised him it would be super quick. Attempt 2 went slightly better but had the same gagging results. But, it was progress that she and I could both see. So, I said, "Alright dude, we've got it this time! Deep breath, all you have to do is bite, as soon as she says "bit" you bite fast, ok!" Amber said, "Third time is a charm! We can do this!"
He successfully bit down on the bite plate and Amber scurried to get everything in place. Just as she stepped out of the door to push the button, the bite plate came out.
We told him how awesome he was and how close he was. He took several deep breaths. Another staff asked if it would help for her to push the button, which was awesome. We went in for attempt 4.
Amber asked if he was ready, he said, "yes" and we almost had it but his head wasn't turned enough, the bite plate was spit out as she moved his head. Sigh.
He was totally being a trooper though! So Amber asked him to turn his head to her, where she needed him to be positioned, then tried again. He bit down, the machine was lined up, the button was clicked and for the first time in 23 years, we had a bite x-ray without anesthesia or being restrained. You have no idea how much pride I was bursting with. Well, you probably do, but if you don't, it was a tremendous amount of pride!
Amber switched sides and after he adjusted to having something in his mouth, side 2 was completed and we had the x-rays we needed for today's visit!
All we had left was to see the dentist. I asked if she could leave the weighted apron on him, because I know how much of a difference that weight makes. She was totally fine with that, as was Parker.
The dentist came in, talked with Parker about his x-rays, and then went to look in his mouth. It took a little encouragement but Parker opened his mouth for the dentist to poke around a bit.
He said he was very pleased with how Parker's teeth look! He said there is a tiny start to a couple of cavities that he wants to watch but nothing that he feels needs any attention at this point. He thinks his wisdom teeth will not move anymore so he will watch them but if they do not move, we are not going to remove them as they are not causing trouble at this point.
He said he would like to have Parker attempt a cleaning and suggested we do it a little at a time. The dentist also happened to be a CUBS fan, which Parker appreciated.
We set up an appointment for a couple of weeks from now to try the rest of the bite x-rays so we have the full set and as much of a cleaning as he can tolerate. We both praised Parker for being so awesome and even said he did better than Grace 😉 I let her know that anytime she has a patient with sensory issues or autism to ask if they'd like to wear the apron the entire visit. It makes such a big difference in helping reduce anxiety. She appreciated the advice. I've suggested this to everyone who has ever attempted to get near Parker's teeth and we've always had a positive response.
We were in and out super fast. Parker called his dad to tell him how great he did. He tried to call Grandpa John to tell him but I told him he needed to wait until Grandpa was home from his trip 🙂 He's rather annoyed that I'm not letting him call Grandpa multiple times a day while he is away, lol.
So, for my Fragile X parents, my autism parents, my special need parents who are in our life... don't give up. I walked in completely expecting this to be a huge challenge with puking, hitting, and nothing good coming of it. I always hope for the best but brace myself for the worst. But, he surprised even me with how amazing he did. He was such a rock star, I'm seriously bursting! So, don't give up, keep forging ahead, they will surprise you. Just as they always do. ❤
A couple of things I want to point out that I really appreciated at the visit today - both the hygienist and the dentist, who were both meeting Parker for the first time, talked directly to him. Not at him. Not to me. But TO him. This was amazing and I know appreciated by Parker, too. They involved him, asking if he wanted to see his pictures of his x-rays, encouraging him to breathe, and just believing completely in him. I need to see more of these moments, they are the best for my momma heart.
I'm just over the moon. I'm so incredibly happy and proud of my guy. I rewarded him with a trip to WalMart for a new inflatable because - dang, he did amazing!!
As much as I know this success means to me, I can see in Parker how proud he is of himself. He is proud that he could do this, too, and that... that is everything!

Parker, My Mountain Mover (9-1-11)

**This piece was originally written on September 1, 2011. Before I started blogging, I'd write "notes" in Facebook (it was a thing way back when - not to age myself but a decade ago, it was really a thing). When this popped up in my memories today, I copied and pasted it into the blog. This is where it belongs. When more cross my memories (or if I find where Facebook has them hidden) I'll move more over to the blog.

Parker, My Mountain Mover
September 1, 2011

There is honestly not a single emotion I can think of that describes how I’m feeling right now.  Proud and amazed are what come to mind but they just don’t do this feeling justice. 
If you’ve known Parker a long time, and especially those who have worked with him – you might want to grab a Kleenex before reading any further. It’s ok… go get one, I’ll wait….. no really, go get one – I promise I’ll wait……………………  and fill in those who haven’t known Parker long on a bit about him.
I often get asked if Parker is high functioning.  I wish : )  Parker is moderately impaired by his Fragile X.  For the longest time he was very, very verbally limited.  His behavior was – well, let’s say “difficult” and know that’s being generous.  His sensory issues were significant, hyperarousal was part of our day, and his anxiety – was through the roof.  There was a time there were more bruises on my body from his meltdowns than not, aggression was his way of coping. I remember getting calls to the school where he had destroyed an entire classroom – literally, every single item off of every desk, shelf, and reachable place was thrown throughout the room.
We were extremely fortunate to have been able to bring together some of the most incredible people, locally and from afar, to be Parker’s team.  No matter the struggle, his team never gave up. Together we have watched him grow, watched him mature and after the addition of the STX209 to his other medications – we watched him come out of the box that Fragile X had put him in.
Outside of Special Olympics – getting Parker to do or go to anything school-related didn’t happen after kindergarten.  Kindergarten was the only school open house we attended together as a family – even then he spent most of the open house under the chair at his table.  From that point on, I attended them alone.
As you know, over the past 2 years since Parker started this drug trial, we’ve seen significant changes in him.  His speech has flourished, his behavior is significantly better, he’s more social, his workload at school has increased tremendously… just to name a few things.  As I’ve said many times, this drug opened the lid of the box he was put in by Fragile X and it’s been incredible to see how it’s brought him out of this box. As much as I credit the drug – I credit his team.  You never really “leave” Parker’s team just because you are no longer on the IEP invitation.  Almost everyone who has ever worked with him still cares, still helps and most of all still believes in him.  For each of you and each of his friends he’s made along the way who remain by his side – I thank you for making tonight happen.  Without your dedication to him and belief in him, he would never be where he is now, even with the STX209.  A drug can do only so much – but one’s belief in you and love for you moves the mountains.
And tonight – he moved a mountain.
Tonight was the open house at the Middle School where Parker attends. Having not attended one since Kindergarten, despite my love and belief that he can do anything – I had my doubts when he said he wanted to go tonight.  At our middle school, the open house takes you through every period (minus lunch) of the school day.  10 minutes in each room.  Since he wanted to go – my goal was to get him in the door.  That was all.  Inside the building, long enough to say he had been there.  (I know, I know but when you add my anxiety and a zillion other kids with their parents to the mix – he and I achieving that much would’ve made me proud!). 
Parker insisted all 4 of us go, Scott, A, Parker, and myself – so we all went. He was a little hesitant to go into the building (he got to go in the back door like he does every day and his para was waiting – our goal was to make this as “normal” as possible for him).  He made everyone else go in first – and then in he came.  He spent some time on the floor by his locker and outside of Mrs. Reavis (the Special Ed teacher)’s room and really didn’t want to go in there.  He listened from the hall as the principal said it was time to go to your first class of the day.  Parker looked at me and said, “let’s go”.  He called for Scott and A and off we went (without his para).  The hall was packed with kids and their parents, none of who I really “saw” even though I smiled and said “hi” because my focus was on Parker making it through the crowd without any problems.  He led us to Mr. Hardy’s room and after a brief hesitation outside the door, he came in and sat down.  Mr. Hardy we learned has a box of Gushers for Parker as an incentive in his closet.  He reached in and took one out of the box and handed it to me for me to use as I saw fit during the evening.  I handed them to Parker and for 10 minutes, we listened to Mr. Hardy talk.  He passed out a very generic schedule that we were to follow. 1st Hour said “PE/Encore” (or something like that) so when the tone sounded, I looked at Parker and said, “Ok, where do you go 1st?”  Parker said, “PE” and off he went into the crowded halls, confidently leading the way to the gym.  The gym presentation was in the all-purpose room, where parents and his classmates filled the bleachers.  Parker asked if he could sit on the floor by the wall and I said, “of course”.  For 10 minutes, we listened to the PE teachers go over their class and the new equipment.  When the tone went off, Parker jumped up and I said, “Where next?”  The paper said, “PE/Encore” – (and I think something else) Parker walked down the hall to the next classroom.  When we walked in his teacher looked at Parker then back in the room and said, “Oh, I’m sorry, someone is in his seat.” Without skipping a beat Parker grabbed my arm and said, “Come on” and led me to a round table where we all 4 sat while we heard about Study skills for the next 10 minutes.
I sat there watching him sitting and listening so intently.  I think, for the first time, I really stepped back and saw him as the 12-year-old that he is.  Independent, maturing, and really at a place that I had prayed he would get to but at times doubted as possible.  It was extremely hard for me not to take a picture – I wanted to share that moment but instead just really savored every second in complete awe that we were actually at the Middle School, in a classroom with him, and he was leading it all.  There was no making him do this, there was no pulling him down the hall, there were no reminders to be quiet or to keep his hands to himself.  Between each session, as we walked through the halls, more kids than I could count smiled and said “Hi Parker” as we walked amongst them.  Every greeting he replied to with a quiet “Hi”, only once with my prompting which ended up being over him saying “hi” so he repeated himself.
As we walked the halls with his peers – all typically developing 12-year-olds, after my anxiety had lessened, I was like – “this is what it’s like… this is what it’s like to be like everyone else, to walk with your child through the halls from class to class at open house… I’m good with this!”
Parker was a little unsure after the Study Skills class where he was to go next – he walked us around the entire building pointing out things like the sun glowing on the doors which is exactly how it looked, and odds and ends.  We made our way back to Mrs. Reavis’ room to find out where exactly he was to be at that time and for the next period.  For the majority of the rest of the day, he would be in Mrs. Reavis’ room – Parker decided this would be a good time to go home.  I spent a few minutes with his teachers and para in that room, we all discussed how very proud we were of him.  Mrs. T – his para who was also his para in 2nd grade so she really understood the significance of this night – beamed with pride.  She said, “We always knew this was in him, some of us could see it, his humor, his independence, his want to learn – but it was only glimpses and it was only available to a handful of us… now, what we knew was in there all along is out for everyone to see and he couldn’t be more incredible!”
By going to this open house for an entire hour (it lasted an hour and a half) and making it class to class as much as he did, being social with his friends in the halls, sitting nicely and listening intently in each of the presentations he was part of…. He moved a mountain.  A mountain he couldn’t have moved without being let out of the box that held him in for so long.
Now, you understand why just being proud and amazed doesn’t do justice to tonight’s accomplishment.  There are no words to describe the feeling you have when your child truly moves a mountain.

Parker and his hamster, Blackie Poops A Lot. 

The Wedding

 I was tempted to write a much shorter version of this to give to Michale to read at the wedding on behalf of the other best man but there was so much going on already, it seemed best to wait and write out what I was thinking and feeling as this message deserves a much bigger audience. And more detail.

It is hard to remember a time when Lee was not in our lives. The boys have been friends for what feels like forever. From fishing to swimming to basketball to just hanging out and watching TV, these two have so many lasting memories that I am so very thankful for.

When Lee proposed to Taylor, he messaged me and said he wanted Parker to be his best man. I was excited, happy for Lee and Taylor, and skeptical. I didn’t say anything to Parker. It was a long way away and life happens so I didn’t say anything.

Over time, when Lee would see Parker he would say he was going to be his best man – I was fairly certain Parker wasn’t familiar with what a best man was so I didn’t say much. I love Lee’s excitement but I didn’t want to set anyone up for disappointment.

This summer, things started happening quickly. Lee needed to set dates to look at tuxes, order cufflinks, to do all of those wedding things that you need to do. And that is when it sunk in with me, this is real. Lee is really following through with this.

I want to be clear on something, I never doubted Lee or what he wanted. I knew that Lee had the full support of his family in his choice. Lee’s family considers Parker to be part of their family.

It’s just… as Parker gets older, the “promises” and things people have always told Parker like, “I’ll still come to visit” or “I’ll always do things with you” or “I want you to be at my wedding” or “I want you in my wedding”… are promises and statements that are forgotten as their lives move forward. So while I didn’t expect that from Lee, I didn’t want to have Parker’s heart – or mine – hurt if this was something that ended up not happening.

There are so many people in our world who love Parker or who are “in” his life yet either embarrassed by him or do not believe he can do hard things. I’ve learned to manage my expectations and his because I have to. I’m his mom.

But, I didn’t need to do that with Lee. Lee, along with his brother Michale who is our go-to when I need to leave town to hang out with Parker, both reminded me frequently the wedding was approaching. And it was real.

So I did what I do, I prepared Parker. Lee was really doing this and I needed Parker to succeed.

It was already agreed that there would be 2 best men, Parker and Michale. That helped a lot as it gave Parker some wiggle room.

I started by putting the date on the calendar last May. As time grew closer we started to talk more about it. We talked about dad and Jen’s wedding and how A, Abby, and Grace stood up by Jen and Uncle Joe stood up by dad. We talked about how important it is for everyone to stand still and how no one is looking at you because everyone is looking at the bride and groom.

We talked about how important all of this was to Lee. How this is something that best friends do for each other and how special it is to be picked.

Then it came time to get fitted for the tuxes. And, it was a complete fail. Parker refused to go. In all fairness, it was just a couple of days after I returned from Europe. We should have planned that better and I knew it. I initially planned to just get him fitted locally and then send that information to Peoria but Michale was returning while A and I went to Mayo the next week – so I suggested that they try again. And sure enough, Parker went without any problems. We were back on track. The hiccup was simply the timing.

We went back to talking about the wedding. There would be a pretty girl and he would need to help her walk to her place just like he walked with Rylee at prom. That would be his job. He needed to take care of her.

We talked about how he needed to stand still and quietly until Michale told him it was ok to leave and then he needed to follow or go with Michale.

We talked about the reception… the party … and that it was ok if he didn’t stay the whole time but he needed to stay as long as he could.

We added dates to the calendar. Picking up the tuxes. The rehearsal. The reception. We started to count down the days.

He was so excited. He was also super anxious. The week of, we kept Willow home from doggy daycare, on Thursday because he was so overwhelmed he just couldn’t function without her by his side. It was the first time I felt a tinge of panic.

I asked my friends for positive thoughts, prayers, whatever they had. This was a huge event for Parker and more so for Lee and Taylor and I just wanted it to go beautifully for everyone. My good friend, Amy, text me a message for Parker sharing her experience as a member of the bridal party and what her “job” was being sure he knew it was Parker’s job to keep Lee smiling and laughing because he will be nervous. Parker liked that. That afternoon, Parker happily left with Lee and Michale for the final tux fittings and to bring them home. After, they went to iHop for supper. They called on the way home laughing, teasing each other, and having the best time ever. He was on cloud 9 until he fell asleep, just so happy from his time with the guys.

Friday, he went to the rehearsal and did great. He came home to his dad’s house supper happy, again, and ready for the wedding.

It was his dad’s weekend so his dad and Jen helped him get ready for the wedding. My first peak at him was when I arrived for the wedding. In all honesty, it was probably best that he got ready there even though I would have enjoyed helping him get ready, it was good for him to have his dad and Jen for this.

At the wedding, Michale let me know there was a seat up front for Momma Holly. It put me close to Parker if I was needed and Michele has always let me claim her sons as mine, just as she claims Parker as hers. Sometimes people that your children bring into your life come with amazing families who become part of yours. We are so fortunate that this is exactly the case with our families. Michale also told me that during practice Parker wandered a lot and that “it is FINE.” I need to let him do it and know that everyone is ok with it.

They made their way down the aisle, Parker with his face covered, he changed places several times during the ceremony on where he stood, he covered his mouth when he wanted to talk – or did talk and was quietly reminded to shhh by the groomsmen – and covered his eyes when they told Lee and Taylor they could kiss.

It was amazing. I was so proud of him. And proud that because he did so well, I got to really focus on Lee and Taylor for their special day. I am so incredibly proud of the young man Lee has become. It was nice to just soak it all in.

The reception went well, overall. When Parker was announced to walk in – he quickly dropped to the ground inside the door. This is pretty common and no one who knew him thought twice about it. His dad went over to talk with him while I got him a lemonade. It worked well and soon he joined the wedding party at their table.

He joined the wedding party on the dance floor and smiled throughout the evening. It’s safe to say that the day exceeded all of my expectations. I appreciate everyone who was sending us positive thoughts and keeping Parker in their prayers during this timeframe.

When it was time for the dollar dance, I went up to dance with Lee and share with him what I would have said in the speech from Parker. I thanked him for having Parker be a part of his big day. Being Lee, he replied, “I told you this is what I wanted, he’s my best friend and brother.” I said, “I know, Lee, but do you know how many people have told Parker they want him to be a part of something, and then when it came down to it they didn’t? He’s watched friends move on with their lives without him. He’s watched friends get married and not even invited him to the wedding. He sees all of this on social media. He knows everyone’s life is moving forward at a pace he cannot. But you… you have never left his side. You have always been there. You two can tease each other endlessly or just sit quietly and watch tv without saying a word and be happy just to be together. Your actions speak so loudly for the young man you have become. Taylor gained a husband who is true to his word, loyal to his friends and people in his life, a friend who sees someone for who they are inside, not anything that holds them back, you are a friend who understands so much that words aren’t needed. And all of that those are things to be proud of. I am proud of you and Parker is so honored to be here for you today and so happy to stand by your side… or behind the other groomsmen. Thank you for being such a good friend.” As we both fought tears, I ended our dance and congratulated him again. Lee reminded me he wouldn't have had it any other way. All he wanted was Parker up there with him for his big day.

We were getting ready to leave shortly after. We promised Parker that it was ok to not stay for the entire reception, it would go way past how late he liked to stay up. He left with his dad and Jen, A and Grace. I was getting ready to leave shortly after.

I told Michele a little about what I told Lee, she looked at me and said, “We raised them differently than the rest.” And she’s right.. we did. Partially because we had to and partially because we knew they were up to the challenge of standing out for standing up for others.

On Saturday, our “brothers from another mother”, all 3 of them, made us all proud. Lee and Taylor had a gorgeous wedding and an incredibly fun reception. We wish them the very best.

And Lee, if you are reading this… just to remind you… Parker says “You’re a girl” hahaha! (It’s their long-time joke)

Congratulations Lee and Taylor Davis!

Please tell me...

 Hey.

Can we talk openly and honestly for a minute? I mean, can you? I’ve been open and honest about this before – I’ve never hidden it, I’ll continue to be open and honest about it but I need for you to be. Open and honest with me about this… because I need to know. Like deep in my bones need to know. I’m hoping it will help me, so your honesty here is much appreciated.

I’ve not hidden the fact that I live with anxiety and depression. It’s pretty significant, I’m not sure I’d say “severe” but that’s likely me not wanting to be honest with myself, not you. If I could accept that I’d use that word when I tell you about it. Significant sounds less overwhelming to me so it’s the word I’m choosing to stick with for now.

Sometimes, I feel like my depression doesn’t match what others say depression is. You know, the people who say “I don’t cry. I’m not sad.” But, that’s me. I’m completely fine one moment and the next I’m so overwhelmed with sadness and fear. It’s not often that it happens like that during the day but it’s incredibly common for me to wake up that way.

Things are great in my life. I do believe I am happy. I feel happy. I have an amazing family, a job I love, a dog I adore, cats I tolerate (just kidding, I love them, too), and a best friend who is always there, I have really good people in my life. My life is good. I went to bed happy. But I woke up sad. Like really sad. Like, I’ve been crying for 20 minutes so far sad. And I have no idea why. None.

I will pull it together. Before I take Willow to doggy daycare, before I even step out of my house, I’ll pull it together. No one will know. No one. I don’t have a lot of options there. I pull it together faster when Parker is with me because I have to. He needs me to. On mornings like this when he is not here, it takes me a little longer but I will, before I step out of the house, before my first zoom call of the day, I’ll pull it together enough to appear completely fine. By the end of the day, when I take my exhausted self to bed (because these days are exhausting), I’ll be ok.

I don’t understand why these random days happen. I’m on meds, I take them faithfully. Nothing sad has happened in the past 24 hours. Or 48. Or 96. Or longer.
It's just…. It’s just how I wake up sometimes.

Here is where I need you. I need to know how it feels to live without depression and anxiety. Like, do you always wake up happy? Do you ever wake up sad? Are your emotions just “there” and not overwhelming? What’s it like? Like, really, what’s it like to live without this?

Because, maybe, just maybe, if you are open and honest with me – I can figure out how to do that, too. I know, that’s not how the brain works but my heart needs to know. I need to know how it feels to be ok all the time. To stay happy when you are happy. To not wake up sad. To not have to talk yourself through your anxiety, depression, or panic attacks. I just need to know… what is that like? Because, I’m pretty sure I’m never going to know through experiencing it myself but my heart really wants to know so I hope you will tell me… honestly.

I do want to add that I know how fortunate I am. While I have significant anxiety and depression, I’m still ok. I can be happy. I think I function pretty well. My meds are great and when they are not, I have a great doctor who adjusts things or switches things up. I’m not at risk of unaliving myself. But I know people who are. If that is you, please, I am begging you, please reach out for help. There are resources and people there to help you. I promise we need you here.

Maybe that’s why I like “significant” better than “severe” I know I could be so much more impacted by the anxiety and depression. I can get out of bed. I can get through the day, it may include tears but I can do it. I do know I am happy. I do know that the day will get better. I do know how much I am loved by my tight circle of people. I do wish everyone knew that.

I just need to know, what is it like to live – to really live, without these challenges. I just need to know, how does that feel? It’s ok to share the good and the happy and be honest about what your life is like, and how your brain works. It won’t make me feel worse. I accepted a long time ago this is how my brain works and in accepting it, I’m able to help it. So don’t hesitate to share your good, I love hearing the good. It helps me.

So, I’m counting on you to be open and honest. And, I thank you in advance. Maybe it will help someone in addition to me, too.

Much love,
H

 

PS. if you are in my shoes and want to share, I’m here to support you. And tell you that chocolate usually helps 😊 Feel free to share what helps you, too. Or just your experience so others know they are not alone. I thank you, in advance, too. Your words are just as important!

Your safety will never be an inconvenience to me.

 We had a very light snow tonight, just enough to cover the ground by the time A and Parker left for work. Before they left, I asked A if they wanted me to take them to work and pick them up. A, who has driven through a blizzard, laughed at me for asking and said they were fine.

I knew they would be fine. I knew they didn’t need me to drive them. But I asked anyway.

A friend called while they were at work, and I mentioned that I had made this offer. My friend was just stunned that I offered, more so, the friend was offended I would do such a thing. I need to “let them grow up and be more responsible”, “stop doing things for them or they will never learn” and to “quit offering to help all the time.” Ah yes, the awesome unsolicited advice from someone who is not raising my kids. That’s always my favorite.

I let my friend rant and attempt to berate my choices for a couple of minutes. When they were done, I finally took a deep breath and spoke.

“As an adult, I mistakenly put diesel fuel into my van. My dad drove hours, very late at night to get me and take me home. He then drove the hour and a half home at 2 in the morning instead of staying the night. Why? Because, as my dad often says, “that’s what dad’s do.”

At 48, he will still offer to drive me somewhere or come get me when the weather is bad, even though I’m completely capable.

He drives my mom to work when the weather is bad.

When I was A’s age, I had already moved out but it never stopped my dad from offering. Gas money, a ride, to drive somewhere…. He still does.

Like A, I’ve always lived in Illinois. We know how to drive in the snow. We know to watch out for other drivers who don’t drive well in the snow. We know that the roads can be unpredictable.

What I hope A has learned, and Parker, is the lesson my dad has taught me over the years – my children’s safety will never be an inconvenience to me.”

My friend listened, disagreed, and moved on with our conversation.

Here’s the thing, you don’t have to agree with me. You don’t have to do this for your children. This is simply my choice for my life, but I want my children to know, that at any age, their safety will never be an inconvenience to me.

I don’t know that my dad intended to teach me that life lesson, but he has and because I know that my safety never is an inconvenience to him, I never hesitate to call him when I need him. It may just be advice or to talk me through a situation, but I know that while I may be a pain in his butt at times, my safety is never an inconvenience to him and I’m so incredibly thankful for that – and for him.

I hope that one day, my kids feel the same about the life lessons I have passed along to them.

I am letting them grow up. I am making them be responsible young adults. I’m also reminding them that as they grow up, it doesn’t stop me from being their mom. It doesn’t stop me from caring. It doesn’t stop me from offering to do something they can do themselves. It doesn’t stop me from loving them.

As I look at what is going on around the world, I am holding my kids a bit closer. I am also passing along life lessons because … “that’s what mom’s do.”