Monday, July 15, 2019

Know Your Cool Factor

The other day we were in the van.

The song "Cool" by the Jonas Brothers came on. And Kyle was very quick to point out that he thought it made them seem conceited. 

And the more I thought about it, the more I thought maybe it should be a motto in our lives. It's probably not as much about conceit as it is about confidence. Maybe we should all be more confident in who we are. 


One thing my kids don't realize is that they're effing cool. And by "effing", of course I mean frickety frackety freaking cool. But you use whatever F word you want there :) 

It's a fact that there are only one of each of David and Kyle on this earth. No one else is them. 

Let's talk about David.








Yep. That kid.
He's 19. Lives at home with his mama. Will never leave her.  Wears diapers. Eats through a hole in his stomach. Gets carried EVERYWHERE he travels. Can't drive. I mean, on paper, he's actually kind of a bum. 

But. He's a smile-maker. A dream-catcher. A joy-bringer. He's talented at what he can be talented at. He scoots. He's determined. He's frickety frackety handsome. He's love. And he's mine. 



If you've never taken a chance to get close to David. Do it. I promise you that you will not be sorry. 


And Kyle. 
Thirteen. Smartass. Lives with his mama. Struggles with anxiety and emotional overloads. Can't remember to brush his teeth. Stubborn as a mule. The list could go on. 



But. He's smart to his smartass-ness. Loves his mama. Through his struggles with anxiety and panic attacks, he absolutely wears his heart on his sleeve. He WILL brush his teeth when told to (Future wives....this means he has the ability to be trained). His stubbornness will leave you feeling mentally stronger than you've ever felt going up against that. Did I mention he's pretty freaking handsome too?



Kyle just needs a few people to take a chance on him. He's not looking for fame. He's looking to anonymously change the world. 

Let's talk about Natalie.



Yep. Her. 

She's a 40 year old, almost single mama of 2. She thinks she's overweight. Her hair is a mess. She questions every outfit that ever goes on her body. She's often sad because she thinks she's failing her kids and life. She has so much self-doubt about anyone ever loving her to infinity. 

But. She's a pretty good mom. She has owned up to her faults in her marriage. She knows she can improve her weight. Her hair abilities are questionable, but if she puts in a half ass effort, she knows it can look ok. She's sad sometimes.....but her kids make her happy. And having someone love her to infiinty? Maybe? One day? In the future?

She also knows that she has to start having self-worth for her kids to be able to see THEIR self worth. 

I hope they know their worth. I hope David knows that he's turned me into a brand new person. 
I hope Kyle knows that he's worth being someone's infinity on a scale of 1-10.

This is all brand new territory for all of us. And together we are going to find our worth and see how cool we really are. 


Tuesday, July 9, 2019

Harsh Judgement. God's Strength.


I recently shared a that Michael and I are ending our 21 year marriage. I knew it was time when I was hearing my name come out of peoples' mouths that truly didn't care about the soft hearts of the people involved in this. Not only myself, Michael, and Kyle.....but our families and nieces and nephews. 

My previous post had about 10 times the amount of views then Kyle's birthday post. 

Sometimes I forget that we live in such a time that people thrive on another person's pain or drama. 

I do realize that I share a lot of our lives on social media and through this blog. 

But just like on social media platforms, I give you a glimpse into mostly the good times or I choose to share some hard times to use it as inspiration to other special needs families. 

I also choose to keep some things private. To protect the hearts who live under my roof. People may be surprised that Michael and I are moving forward without each other as married partners in life. Because we did such a good job of showing how to parent these 2 kids together. And we WILL continue to parent and make decisions for the boys together. 

Without details......it was time. Time to find ourselves. Time to start the next journey. 



And just because it was time, doesn't mean that it's been easy. To face other people's harsh judgements. To break my kid's heart a little bit. To figuring out a new routine and new responsibilities. It's been so hard. And there have been a lot of tears. I've closed myself up in my little world with my kids and my parents and my sisters and only let a few friends in. 

I am NOT a closed off person. I wasn't sure who I could trust or talk to. And I was especially aware of extremely harsh judgements of others. 



I'm kind of done with that part of me. I have to focus on why we are doing this and not worry about what others think. I need to have a support team in place for my children when they start back to school next month. I need the sunlight people in my life and I wanna leave the storm people outside.
I can do hard things and God is going to see me through this. 

I need to be surrounded by love and support right now. And I know who I have in my circle. And I love each of you for being there for me. 

It's time to let people make the right choices for themselves. You might think you know what's going on. But in actuality...….you're only seeing the shell. 

Remember that before you judge. 



Friday, June 21, 2019

Find Your Spirit

I haven't blogged for a long time outside of birthday posts for the boys. 

Personally.....we've been going through a lot of change that has nothing to do with the outside world and everything to do with my family. 

And every time we go through another change that gets us closer to the ultimate goal, I worry about Kyle. I worry about David. I worry about Michael. And I worry about myself. 

In close to 22 years I have been taking care of everyone except for myself. I love being a caretaker. It brings me a level of joy and love to give myself to other people. 



In those 22 years, I lost myself. 

Which in turn didn't allow self-love or self-care. 

Which made me someone I'm not. 



It's so important in a marriage to put work into the couple. As a couple. Not as parents. 

It's even more important as special needs parents to do that. 

We failed at that miserably. What we did, we really did think was the right thing to be doing. We (myself in particular) threw every ounce of our beings into the kids. 



We are both amazing parents. And we are both good people. And we both deserve to rediscover who we are as individuals in our 40's.

I will always love my family. I love being with small humans that Michael and I created. I love watching them grow. I love making memories with them. I love beginning and ending new chapters with them. 

And I will always, ALWAYS adore the first part of my story. 

But sometimes books have series and there will be a new book being developed in the coming years. The most exciting parts are yet to be discovered. 



Keep discovering your spirit. Today I played in the rain with Kyle and it was delightful. Tomorrow maybe I'll skydive (well....probably not). 

Keep being you. 

Being me.....To Be Continued. 




Thursday, May 9, 2019

7+6; 9+4; 10+3 (No Matter How You Add It Up, You're 13!)

Kyle Matthew......

I cannot believe that you're 13 now. These years have flown by. The good and the bad and the spectacular and the disappointing.



You are one of the biggest blessings in my life. You are also sometimes one of my biggest headaches. I think it's because you and I both share the same sarcastic humor, stubbornness, and the fact that we both wear our hearts on our sleeves. There are days there isn't enough room for both of our personalities!



We've thrown a lot of stuff at you this year. Some you handled like a champ and some things were a little bit harder. But you're asking questions, You're processing. You're dealing.....not always well, but dealing.



Your dad and I love you so incredibly much. You are David's very best friend in this world. The dogs love you and they love you more when you remember to feed them on time. You worked hard in track this year and got some new PR's. You struggled a little learning to hold up your end of responsibilities. We have some work ahead of us as you venture into this teenage world. But we survived the preteen stage. So I think we'll make it through.



No matter what. Keep being you. I used to want to change who you were. I wanted you to be more outgoing. More open. More me. Turns out......while we're similar, you are you. Not me. And I never want to change you heart or your personality or your wit.



And readers......If you've never had a chance to break through Kyle's exterior shell.....You are missing out on something wonderful!!!


Happy 13th Buddy! I love you so much!!!!




Tuesday, February 19, 2019

19 Years and Counting




2/20/2000

David Webb was born to a really young mom who really had no idea what she was doing.

He helped her learn life.
He helped her learn acceptance.
He helped her learn to overcome frustration.
He helped her learn unconditional love.
He helped her become Natalie.


I NEVER knew for sure what I wanted to be when I "grew up".

Truth is....I didn't know until I became a mom.

And David is the reason I know that was what I was meant to do.

Yes. He is difficult.

But he's joyful. He's innocent. He's mighty.

He's my everything.

Last year was such a milestone birthday at 18. Nineteen seems like we're just floating along in that last year of his teens.....waiting to enter into double decades. It seems small and intimate. Of course I celebrate EVERY year David has another birthday. But this year.....we will celebrate him quietly at home. Which is really what he prefers.

Last year his birthday blog reached over 10000 views. If this one only reaches 2.....that's ok.

Because I write to him for me. I know he will never read my words. But it brings me peace to put my feelings for him in written form. One day I am going to look back at these posts and remember all the things David brings to my life. There is no one who can shape a person quite like a David can.

So for his 19th birthday, I hope everyone can just embrace the things David has shown them. Whether in person or virtually. Be genuine in YOU. Just like David is.


Happy Birthday to my favorite David in the world. I hope you know what you mean to me. I love you so much.






Friday, January 11, 2019

You-Hoover-Fong Syndrome. 2 Years Post-Diagnosis

Yesterday was the 2 year anniversary of us receiving the phone call that David had been diagnosed with You-Hoover-Fong Syndrome, a mutation on the TELO2 gene. When he received the diagnosis, he was the 7th person known world wide with the syndrome.


What's changed?? Technically nothing. But virtually?? Everything.

There is still not a lot of research going on with this gene mutation. We still treat David's symptoms just like we did before. He hasn't really made any gains in development, but this also doesn't seem to be degenerative either. We still face our daily struggles. We still see numerous specialists. Life is very much day to day here. I'm still really tired. It's so much work somedays that I want to cry. But it's also so very rewarding to my soul to take care of David. I now know that I was meant for him and he was meant for me.

Genetics is so very interesting. It takes money for research. It also takes someone willing to put in the research. For someone to really be willing...…..it takes numbers.  But the reason it's called a rare disease is because it's just that. RARE.

Because of my original blog post about the diagnosis, my annoying (to some of you) hashtags on facebook and Instagram, and my incessant posting, we have very slowly begun to add to our YHFS family. Like me, when their loved ones are first diagnosed, family hops onto the internet. And when I did it....I found so little information about it. Now when people search it, my blog pops up. I'm so grateful for that post.

We are still a small group. A very small group. But together we are growing and supporting each other. We have a multitude of talents between all of the parents and loved ones on the page. Mine seems to be the ability to write (it's for sure NOT organizational skills). But we have others who are on different boards for genetics in their states, some who seem to be skilled at spreadsheets, one that has legal skills, etc. Some of us are just extra good at showing love and support to our kids.

We are trying to get this syndrome on the map. By working together at coming up with a list of different symptoms and alternate diagnosis, we are hoping to bring some interest to

this disease. More interest equals more money for research which equals more information to help our children and future children with YHFS. Our kids are the pioneers for this syndrome right now.

I wanted to share our little family with you. Keep in mind....these kids ALL have You-Hoover-Fong Syndrome...…...But that's not WHO they are. They are all individual, loving adults and children with families who want the best for them. We have kids in the US, England, Scotland, and Spain so far. And I have absolutely loved the support we have provided for each other over the past year.

So please meet some of our YHF kiddos :)

David-18 (almost 19)

Alexander-12 (almost 13)

Ellis-19 months

Sawyer-4

Bella-10

Reis-12

Toby-17 weeks

Daniel-14

Alasdair-30

Jan-2

Alice-3

Matt-22

Meg-22

Nick-14


Matthew 2015-2018 RIP Angel