Monday, August 26, 2019

Friendship Tests.

Friendship tests.

I vividly remember the day in 2003, shortly after my son was diagnosed with Fragile X Syndrome that I lost a close friend. I lost her because she chose to walk out of my life. Intentionally…because my son’s diagnosis was too much for her to handle.

Up until that moment, I didn’t realize this was truly a thing. That someone would sit you down and tell you that while they love and care for you, they simply could no longer be a part of your life because they could not cope with something you had no choice but to live with. It still boggles my mind, honestly.

She felt guilty that her son could do things my son could not (both were under 5 at the time) and she just couldn’t bear to watch my son grow up unable to do the same things. It just wasn’t fair. In hindsight, I think she means it wasn’t fair to her – not that it wasn’t fair to my son to get this diagnosis. Whatever it was, I moved on.

I’ve always made friends cautiously. I know that life happens, and people grow apart. There have been many times in my life that I was quickly reminded who my true friends were; the fragile x diagnosis, my divorce, my job, my weight, dating, politics… the list could just keep going on and on. Each time, some people left my life and others came into it.

I felt, though, as if I had reached a point of really having a grasp on who was in my life – and why – and who was truly a friend and who was just there wearing the nametag. I honestly thought I knew.

Then my daughter was diagnosed with a rare, life-threatening auto-immune disorder. I knew that new people would come into my life. They have and they are amazing – I am so thankful for them. I knew there would be some friends that from no matter the distance, I would be able to feel the warmth of their hand holding mine with each doctor's visit, even though they aren't physically there with me. A couple who would offer to drop everything to be by our side. They are my everything.

But I never expected that people who I thought were true friends would disappear. Yet, they have; some without saying a word and some while telling me this was just too much for them. Yes, for them.

I guess this is what I need help wrapping my head around. 

When my children were diagnosed (both times for my daughter), this wasn’t optional. My children didn’t get to say “You know what, I don’t want this. I’m going to pass.” I mean, I wish they could have… that would have been awesome but apparently, it wasn’t an option for them. It wasn’t an option for me either. I suppose technically I could have removed them from my life but that’s not how I mom. It isn’t how anyone that I know moms (or dads) either.

We take what life throws at us head-on and we make the best of it. How is it when life throws something at a “friend” you can walk away because it is too much for you? You, who simply need to be there from the outside – to dry the tears, to learn more, to offer a shoulder. How is that too much for you?

I know we all get busy, I’m very guilty of that myself. I tend to think at 2 am, “I should text so and so to see how they are holding up.” knowing that at 2 am I should not be texting anyone, I tell myself I will in the morning and then 2 weeks have passed and I am awake at 2 am feeling terrible for never sending the text to ask and schedule one, apologizing and asking for the next day. I understand that some friends are more hidden, their lives filled with their own challenges or anxiety - I know you are there, I still see you. Disappearing altogether because it is more convenient for your life to go on without this additional “stress” or “burden” is completely different.

I’m a pretty open book. While there is a lot about this newest diagnosis I have not shared, the basics are out there, and I’ve been open on how well I’m handling it. And in my openness, I’ve been reminded of who is truly there and who is just wearing the friend nametag and who has disappeared. It has shocked me.

I’m not going to apologize for this new chapter in our lives being “too much” for you to deal with. You aren’t living with it. My daughter is. And, she is facing it head-on - the good, the bad, the really scary - all of it. She lives with that every day. Thankfully, her friends are there, tighter than ever, by her side.

You are missing out by choosing not to be.  

I’m going to take a page from your playbooks now. I’m no longer going to keep reaching out, I’m not going to keep trying. If 3 months into this, you’ve disappeared from our lives, then you are where you need to be.

I’m not bitter, or sad, or even angry. I’ve worked through the hurt and being let down. I’m at peace with this. I only wish you the very best. I’ll still be there, as I always have been, cheering you on. When life throws you a curveball – because, believe me, that is what life likes to do best, I’ll be there if you need me. I simply won’t keep reaching out, attempting to engage you to be a part of ours.

Our lives will go on, beautifully, even with the challenges thrown at us. We’ve got this and believe me, we know who has our backs.

Thursday, June 20, 2019

I'm not ready. A new rare disease, a new conference, a new family.

In the spring of 2003, my children were diagnosed with Fragile X Syndrome.

I jumped in learning everything I could, reading anything I could get my hands on, and speaking to literally any group or person that would listen.

In the fall of 2003, my mom and I attended a local conference in Cincinnati, Ohio on Fragile X.

By the spring of 2004, we were working on our first Walk for Fragile X – the first of too many to count fundraisers.

I joined the Listserv (pre-social media email group) and made friends who instantly became family.
In 2006 I went to my first conference in Atlanta, Georgia with my mom and sister – walking in I felt like I already knew most of the people there – it was now simply putting faces with the names.
By 2008 I was speaking at the International Conferences and bringing families from across the country together. I was determined that no one ever felt alone.

Over the years, I welcomed hundreds of people to conferences. I would go out of my way to look for them, meet them at the airport, in the lobby, or at the bar so they felt welcomed into this new world – especially for first timers. I carefully watched social media and made more introductions than I could ever recall yet each one meant everything to me – and more so to the people I introduced.

You would think that walking into my first CureJM conference would be a piece of cake. But it’s not. It took me a little bit to really understand why – there are so many factors.

1.       We are 3 weeks and 2 days into this diagnosis. While I’ve attended 1 webinar and ordered the Bible of the JDM world (Myositis and You), I haven’t had a chance to read a lot of it (thank you bathroom and kitchen renovations – and life. I’m still in the “I’m drowning” stage of this diagnosis.

2.       My anxiety is significantly more now than it has ever been, with each passing year it increases. It’s so fun being a Fragile X Carrier.

3.       I wasn’t expecting this. I mean, clearly, I knew something was wrong with Allison – I’d been searching forever trying to get an answer – I just thought it would be, well more simple and definitely not life-threatening.

4.       I haven’t had time. This is the biggest one.

As I’m laying here in my hotel bed with my bestie the next bed over sleeping, I’m still a frickin mess. In a few hours, I’m supposed to meet this new family, embrace and learn about this new journey we are on but no part of me feels ready. I haven’t had time.

I haven’t had time to wrap my head around it, to learn on my own, to understand even the basics of it.

I haven’t had time to meet people online, to get to know them and their journey, to feel welcome and part of their lives (trust me, they are welcoming! I’m just shy and it takes time for me to open up.) 

I haven't had time to meet the "Holly" of the CureJM world who would be watching for me to register so she could give me a hug and take me under her wing.

Time has not been on my side with this one.

I’m not walking in looking for familiar names or faces, I don’t know the names and stories (yet) of their children, I haven’t shared travel tips or contributed anything to this new community as I had with Fragile X before the first conference.

I feel as though I haven’t established or proven(?) myself yet, to show that not only do we belong here but we will make a difference here, too. (I know this sounds crazy, it is just how my brain works).

Most of all, I’m scared.

I’m scared of what I’ll learn. 

I’m scared I won’t learn enough. 

I’m scared of not fitting in with this new family. 

I’m scared I won’t contribute to their lives in the way I have to the lives of so many in the fragile x world. 

I’m scared I will fail my daughter. 

I’m scared of what her future might hold. 

I’m scared of what these drugs that are helping her will do to her body long term. 

I’m scared of what would happen if she didn’t have them. 

I’m scared of the new battles that are ahead with the school. 

I’m scared of not doing enough. 

I’m scared of test results I don’t understand. 

I’m scared of not using enough suntan lotion on her. 

I’m scared of every part of this new diagnosis.

Fragile X was overwhelming but it wasn’t life-threatening. While the medications Allison is on *should* protect her and help her heal, this will forever be a part of her and not watching for flares and not knowing everything we can and treating her, means we could lose her. And that terrifies me.

I’m older now. I’m tired now. I’m still a single mom raising Parker and Allison now. It felt easier to learn 16 years ago, it was easier to be more focused. I certainly was not this tired.

I DO see what is in front of me. I trust our doctor at the Mayo Clinic. He is amazing and we have trust and comfort in him. We KNOW what is going on so there is no valid reason I should fear losing her. This is not curable (yet) but it is treatable – and I need to focus on that. I know I’ll learn. I know that I’ve bought the book, attended a webinar, bought the sun-protective detergent and clothing, I know I am doing all I can. I do know there is HOPE.

It’s just right now, while I attempt to prepare myself to walk into these meetings tomorrow not knowing a soul … I don’t feel ready. I don’t feel like I’ve had time to wrap my head around it. But I also don’t feel as though I’m in a position to wait, even a year, for the next one.

What I know is I’m not alone. I have my very best friend by my side. I know she will absorb probably more information than I will as I’m emotionally not ok yet. I know that she is my strength and also my encouragement. She will push me  - not so far that I fall but just enough that I can stand on the edge and see the view. She will remind me of who I am. She will make sure I fly with these momentarily broken wings. Because this is what best friends do. I am so incredibly thankful for her.

I wish I had more time to get to know people and to learn but I also know from this a unique perspective having been on both sides now and I hope I can use that to make life a bit easier for the next person in my shoes.

I know this is where I need to be and what I need to do. I know that while it feels like I need more time, this is the right time.

To learn more about juvenile dermatomyositis please visit:

To donate to Allison's Angels, our fundraising team for Sunday's CureJM walk visit:

Tuesday, June 18, 2019

"Let's Renovate The Kitchen" they said....

 "Let's renovate the kitchen!" they said.
"It'll be fun!" they said.
"It's older than you, time for an upgrade!" they said.
"The boys will need this when it's their house." They said.

I set a very strict timeline. This is what you HAVE to do when you have a child with special needs. Everyone laughed at me. But, we are pretty close to sticking to it.

*Demo 2 days - completed.
* Electrician - 1 day - completed.
*Install - 2 days. Hopefully completed, just not the 2 consecutive days I planned but that's ok :-)

Here is what "they" didn't tell me about the demo of the kitchen...

Everything from your kitchen will end up in your office, completely not accessible to anyone.

Your body will hurt everywhere, mostly your arms but your body as a whole. It won't help that you are grossly out of shape.

After the kitchen cabinets are out, you'll decide you want to move 2 of them to the basement for the laundry room... and because your dad is a rock star, he will make that happen for you.

You'll bleed. Often and have no idea why you are bleeding, well, most of the time.

You'll cry, sometimes randomly, sometimes out of exhaustion, sometimes out of pure fear that you've made a huge mistake. You'll mostly cry in the shower because you are so dirty the tears help clean you even more... and no one hears you cry in the shower.

You'll discover nothing feels better than a hot shower, ever, in life, than this after a long day of demo when your hair is white from drywall dust and your exhausted. Take the longest, hottest shower you can - it will be amazing.

You'll be pretty convinced your arms are going to fall off at the end of the day and have been dislocated from your shoulders. They won't be but it'll feel like it.

There will be dust everywhere. In your nose. In your eyes. In your lungs. You will be sneezing drywall dust indefinitely.

You'll constantly think... where is the dust still coming from????

You will think about how you've seen every home improvement/DYI show there is... Fixer Upper, Property Brothers, Love it or List it, Flip or Flop, Rehab Addict, Vanilla Ice project (don't judge), Good Bones, Home Town, Property Virgins... really, all of them and no one, NOT ONCE during demo showed drywall dust throughout every square inch of your space.

You'll put plastic up to keep it "contained" until someone walks through it (which is inevitable as the fridge is still in there) and then tracks it back out.

The pets, especially the dog, will want to be on whatever side you are no matter how many times you shoo them out and re-tape the plastic. The cats are much sneakier about getting in.

Everyone will love your dog, I mean, how could they not?!?

One of your cats will insist on being right in the middle of the tools, or nearby, usually asleep not giving a f&#( about what is going on around her but reminding everyone this is her house first and foremost.

One of your cats will peak in now and then but keep a safe distance.

One of your cats will stay in the basement, hidden from all human contact only to come out at night after everyone has left and completely unsure by what this mess is you have made or what you have done while she begs you to go to bed.

You'll make your first of many trips to the lumber yard for a new tool... you'll love the new grinder because... power tools... and then think of how you need to seriously get your garage in order so your tools are all happily housed somewhere.

You'll then remember how overwhelmed you are with the current project and think the garage can wait... forever.

You'll come across stuff in the removal that will make you cringe that you did (I'll never paint over another outlet or light switch again) and curse whoever did it previously that wasn't you (the cabinets were cemented to the floor when the tile floor was put in - I can't curse that one too much, it looked great!) and threated to whack someone with a hammer who has made your destruction challenging (let's use 2 - 3 three inch nails on every 2x2 and random 2x4 there is to hold the soffit in place.... I'll NEVER over nail anything again and I didn't even DO the soffit, I just tried to take the damn thing down.)

You'll go to Farm King and ask the guy for whatever saw will cut through wood, nails, and metal at one time because you are ready to lose your mind. And they will introduce you to the sawzall which will become your new best friend (sorry M, I'm sure this will be temporary). You'll love it so much that you'll decide you need to give her a name and then get sidetracked with a corner piece that has 1,900 nails in it that you forget that naming her was a priority.

You'll be even more thankful for your dad who shares his wisdom, muscles, and advice with you for multiple days of the demolition (that you had planned 1 day for... but added in new projects and hit a hundred snags on the first day - including the dumpster being delivered 4 hours late and multiple trips to the lumber yard.) You'll appreciate this is how he is spending his Father's Day so you can start installing cabinets tomorrow and love him even more.

This picture is actually from day 2 but let's pretend it was day 1, I'm tired.

He will also leave you with "homework" after he leaves to be done for the next day (like this is "Trading Spaces" or something) ... it won't all get done because the neighbor will be upset and scare you so you'll stop ... but here is what the homework was.
Remove everything in the red.... 

Remove everything in the red and add cement board where it is blue

This is what was accomplished before he returned the next day with mom..

You'll question your sanity and why you ever thought this was something you wanted to do. You'll wonder if it's worth it. You'll be convinced it wasn't and that every decision you've made was wrong, just absolutely wrong.

You will vacuum the dust from your floors, mop it, then get on your hands and knees and wash it again because there is still a film of dust. It'll look great until you start working again and then you'll discover the dust is never ending and you'll likely be cleaning it up for years to come.

Everything happens in phases. There is the demo phase, the installation of cabinets phase, the wait for your countertops phase, the install the countertops phase, the put up the backsplash phase and the install the hardware phase (that may come before the countertops, I just need to get them still.... )

You'll be reminded that your dad, amazingly, knows how to do literally anything and what he doesn't know or isn't 100% sure of, he will have a friend who does. (I need knowledge like this - and friends, like this, of course, too!).

You'll need your mom to come help with demo day 2, since it wasn't supposed to go beyond demo day 1 but demo and wall reconstruction are all in the same and takes more than one day when you are ripping out walls. You'll be reminded that your mom is an incredibly hard worker, who also knows a thing or two, and you'll appreciate her help and guidance along the way.

My parents are the very best!

You'll have a mental breakdown with your friends, convinced that your colors are wrong, your choices are wrong, and that all of this was a bad decision. They will build you back up as your excitement drains from your exhausted self.

You will make 9 trips to the lumber yard in one day (Thanks, RP Lumber for being so awesome & helpful!!) and apologize for being sweaty, gross, and likely smelly and thankful they are still super friendly, help you find what you need, and talk to you.

You will discover that you don't have access to anything you need and while you will have a child that only wants to eat on real plates, you have no way to wash them (or bowls from cereal) except the bathroom sink - which makes you want to cry.

You'll be tired. Not just kinda tired. Not just super tired. You'll be tired all the way to the bottom of your soul exhausted because on top of demo and prepping to install you are still mom. And for this mom, that means keeping things "as normal" as possible for my special needs son who is not thrilled about having anything out of place.

You'll be reminded once again what a rock-star your daughter is who kept your son busy (and away at dad's house) so I could have a full day of demo and a full day of install without stressing him out. Allison, you are my everything!

Your cats will be mad that you've locked them in the bedroom & laundry room with the dog while the cabinets are brought in...

Almost everything from your living room will end up in your family room so you have room for box after box after box of new cabinets and you'll realize the only actual functioning rooms in your home are the bathroom (just one because the other is under construction, of course), and your children's room (because your bedroom is also under construction).
I always wanted the kitchen in my living room. 

Oh look! It's the new kitchen!

Sweetie... checking it all out after being released from the basement. 

So... "Renovate your kitchen, it'll be fun" they said... I should point out the "they" in all of those statements... was me. 

Install day will arrive and as the first cabinet goes into place... you'll be reminded of exactly why you did this....

At the end of install day 1, we are here... ONLY because of the incredibly hard work by my dad, his carpenter friend, Bill, Scott (yes, my ex-husband - this will be his son's house one day!), and myself...  I am SO grateful and thankful for every single one of them. During the process then some before and afters...

Before ... and after... and still needs done, lol

Before... Why we never thought in 21 years to put cabinets on this wall baffles me, lol

After !!!!!

The trim will look like this-ish ;-)

The island will seat 4 :-) 


Almost after...


In progress...

These remain...

I still need to do the hardware. I'm thinking silver rectangular, thin pulls - if that makes sense to anyone other than me.

The island will have it's countertop tomorrow (thanks, mom for making sure of that!). The rest of the counters will be measured tomorrow and arrive in a couple of weeks.

The backsplash will go in after the counters.

Cabinets, counter, backsplash

Then... THEN... I'll take a break... go back to finishing Allison's bathroom update.

Seriously, I could not have done this without Melissa & Sonja walking me through my emotional meltdowns. Jen picking out countertops and helping me finalize a cabinet color (and lending me Scott's help!), Scott for his tremendous help and use of his tools, Bill - such an awesome carpenter, the people at RP Lumber, Paul, Scott, Chad... all of you! Dan, for understanding I needed some time to do this and surviving without me for a bit, Allison for helping with Parker. And MOST OF ALL, my mom for helping and pushing me to do this and my dad who has put in so many hours of help repeatedly saying "this is what dad's do" and teaching me so much along the way.

We are not done yet but we are so much closer.

So, yeah... I guess in the end "they" were right. It wasn't fun but it WILL be worth it!