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

Sunday, December 2, 2018

I fell

The other night, I took a rather ungraceful stumble UP the steps. I banged my head, my ankle, my knee, jarred my back and neck, and hurt my left wrist attempting to catch myself. It hurt. It still hurts.

I admit it. I don't walk with grace. I don't dance with grace. I can barely speak with grace.
I'm klutzy. I'll be the first to tell you. It runs in my family. Not one of us Millan sisters are blessed with the ability of gracefulness.

So....as the story continues. I hurt. I felt like I'd been in a fight the next day. No one told me that once you're forty, BAM! Your body falls apart too. Especially if you don't take care of it. Kinda like me. But. I will heal. I picked myself up and took some advil. Every day is a little bit better.


I started thinking about other ways we fall. We fall all the time.

My favorite day I fell was on February 20, 2000. The day I became a mother. Man alive, David was my entire world from day one. If I ever questioned my life before about what I was supposed to have for a career.....motherhood would be it. Maybe that's corny. Because all mothers fall in love with their children. I know EXACTLY how each and every one of you mothers felt the day your children were born. The difference between myself and some of you is that some of you are career driven women outside of your households. Which is amazing. Because you juggle it ALL. But for me.....I never ever knew for sure what I should be. Until David came along. And remember. We didn't know David had severe disabilities until he was about 6 months old. I loved him for making me a mom and giving me that feeling of purpose.

Another time I fell was the summer of 2000. I can remember that we saw a new doctor. And she took one look at him and one look at me. And said "There is something very wrong with your baby." And I was by myself in that office. And I got referrals for feeding, speech, physical therapy, and occupational therapy all in one day. And I held it together until I got home.

And then I fell. I fell apart. I can't even remember for sure when I called Michael to tell him. I can't remember if I waited until he got home or I told him on the phone. Heck. Maybe he was with me at that appointment. But when I was told that David was not ok......I was in my own world. I had already failed my 6 month old baby.

And I have fallen so many more times over doctor's words, predictions, and lack of knowledge over my child's disease. And when I fall in those times.....I stumble so hard, it knocks me out emotionally. I'm amazing at holding it together when I'm being told any kind of news that is new and scary. But I am a professional at getting out to my van and just crying my eyes out. But so far my record of not getting back up and crawling out of that deep hole is pretty good. And my record for doing whatever I have to do for David is phenomenal.



And of course, I can't forget the day I fell for Kyle. May 9, 2006. I admit. It was a different kind of falling in love. He was a brand new person we had created and just knowing that he didn't have some of the genetic characteristics of David's disease (of which still had no name at this time) made me fall in love with him more.

He was a gift to me at a time when I needed that gift the most. I learned to fall in love with the most stubborn baby in the whole wide world. You all might think that you have the world's most stubborn kid. But I think I hold that title hands down. I learned to love Kyle for who he actually is and not who I thought he should be. I admit that I wanted to fall in love with a perfect baby/toddler/little boy/adolescent boy. And he wasn't perfect. He was rotten, and cried, and only wanted mom. Yet he was gorgeous, let me sleep at night, and when he smiled at me......he made me fall for him all over again because smiles were earned with Kyle. Not free.



While I wish that I never fell again like I fell on Friday night...….falling makes me get back up. Falling makes me stronger. Falling makes me love. Falling in any way makes me who I am.


So when you fall into a negative fall......rise up. We're all going to fall that way repeatedly. But we don't have to stay down.

And when you fall in a good way...….absorb that feeling. Feel the warmth, the love, the compassion, and the amazement.


Wednesday, November 7, 2018

Hard For Him

I get comments a lot from people.
*God only gives special children to special people.
*I can't imagine what you do.
*This must be so hard for you.

I understand how people can think that. 

But let's be honest with each other. This has never been about me. 

It's about my little hero. David. 

First let's start with God only giving special people special kids. I actually hate that saying. Don't sugarcoat it. Don't make it seem like my child is anymore special than any other child in this world. I do believe that God had a hand in myself & Michael being David's parents. I was spoiled before I started living this life. I truly didn't think I would ever spend my life giving all of myself to one person and letting everyone else get the bits and pieces that I have left of myself. And sometimes that's not a lot. I wasn't special before I had David. But David made me a different person. I'd love to think that David had a hand in choosing me as his mom. Kinda like saying "Hey, God. She doesn't know it yet. But she needs me in her life." So maybe I was chosen for this form of motherhood. But I don't think it's about the fact that I could handle it and you couldn't. I just needed David. To teach me what I truly wanted to be. 



You can't imagine what I do? No. You can't. I share A LOT on this journey. But there are some things that only close friends and family know about that we have to do to provide comfort care for David. It's gross and I don't like to do it, but I do it for him and it helps him. And I choose not to share those details for his dignity. He deserves that. And even the things I do choose to share sometimes aren't the most pleasant things......but I would love to believe that you would do the same things for a child of yours. I would do ANYTHING to make sure David was comfortable. And it makes me sad when he's not comfortable. So I will do anything in my power to provide him with a good quality of life. 


And the one that gets me the most.
This must be so hard for you...…

Yea. No shit. LOL

But guess what? It's not nearly as hard to be me than it is to be David. 


I feel like even though I don't know firsthand what it's like for David......I'm the closest thing he has for a voice. 

What do you think it's like to live in a mute world....he's profoundly deaf....and not have any form of communication with the rest of the world other than his demeanor? What do you think it's like to show that you're angry or upset or hurt and still not have your people be able to figure it out??

What do you think it's like to have lost the ability to swallow? To be sick and to have extra secretions and mucus that you desperately try to cough up to clear because you can't swallow it, but don't have a strong enough cough to do the job, so you choke on it instead. To have your parents have to stick a suctioning device into your throat multiple times a day to try to clear it out for you??

What do you think it's like to have a body that is continuing to atrophy and work against you? To not be able to walk? Or stand? Or hope that someone comes in to get you out of a little tiny corner that you've gotten yourself trapped in and just couldn't wiggle yourself out of? 

What do you think it's like to have to wear diapers at 18 still? To rely on someone else to keep you clean and dry and sometimes not realize that you're not until the normal time they normally check on you for that situation? 

What do you think it's like to be DAVID???? It's freaking hard. 

So. Freaking. Hard. 

But day after day I watch him do hard things. He will dig to the bottom of a toybox to get that ONE toy he wants. And it might take him 10 minutes. He scoots on his back to get pretty much anywhere he wants to go. Backwards. Pushing back with his heels and looking upside down. He walks in a gait trainer at school. I get videos of it. And he's not doing it perfectly.....he's flipping doing it. 

Yes. It's hard to do what I do with David. 

But it's also harder for David. 

But gosh darn it. If that kid can do super hard things...….then I can do hard things. 

For him. 








Monday, September 3, 2018

Dreams Can Come True

Our little You-Hoover-Fong/Telo2 Mutation group is growing on Facebook.

When David was diagnosed in January of 2017, we were told he was the 7th known worldwide with this syndrome.

We researched. We looked. We tried to find more.

We failed.

For a little bit.

Then I wrote a blog about it. And someone found my post.

They were one of the original 6 before David.

In the year and a half since David's diagnosis, we have found numerous others. Many through my original blog post. A few from hashtagging the crap out of it on Facebook and Instagram. The original family whose 3 children were diagnosed first. Two children from other countries. Sweet families with young children and older children.  And being a newer syndrome (I believe the first diagnosis was in May '16), I know there will be more.

It is not my dream that fellow parents go through this. It is not my dream to watch others struggle in this hard, hard life.


It is my dream that we can come together as a family with similar situations and help each other through it. The support. The love for our children. The sharing of accomplishments and defeats.

Through our tiny little group (I think there are like 12 members now), we are together. And we are discovering that while our children all have mutations of their TELO2 genes, they are all still very individual people with their own distinct personalities. And just like with any syndrome or disease, they are all differently delayed. Some walk. Some can talk. Some can't hear. Some don't eat by mouth.

But what I have found...….is that we are here for each other to cheer one another on. When Sawyer walked, we shared in that joy. When we saw Daniel at his field day in England, we shared in that joy. Heck. If they smiled and had one good moment in one whole day, that is something we would celebrate together.

We also came together to discuss meds, tests, fears, and the woes of being parents of disabled children. We can cry and whine on that page with no judgment. We are ALL tired. We are ALL doing the best we can do. And sometimes that might not always be enough for our kiddos. Sometimes they require more from us than we have. But my oh my. I love to see us all give our all. Our hearts all belong to these kids. And because our hearts are all tied to our kids, and our kids are all tied to each other..…..we are all a little family.

I will continue to rally to bring awareness to our kids. I will rally to bring awareness to their rare disease.

I will continue to cheer and love ALL of these kids from afar. They are so special to me and my heart is so overjoyed that my little blog has helped bring our families together. I will forever be grateful for the ability I have to write. It brings me an overwhelming happiness to share our story.

I have a small audience who reads. But I'm discovering my purpose from this blog and these families we have connected with. Never hesitate to share my words with others. Because maybe it will help our small community grow larger. Grow AWARENESS. Grow UNDERSTANDING. And grow LOVE.








Sunday, July 29, 2018

Crazy Kids. Crazy Mom.

I am the mother to two amazingly different boys. I mean, you all already know that.



What you don't know is their similarities.

They're both stubborn as one of their parents (me).

Kyle will debate with you until it's twisted so much that he won the argument. And when we're both trying to win the argument, things get a little heated between us. This will for sure make me crazy one day.

David self-harms. He knows he shouldn't. If I touch him, he stops. Then he waits until I turn around and starts punching himself all over again. It's a vicious cycle between the two of us. This will for sure make me crazy one day.

Both boys need their space.

Kyle is just at that preteen age that he would rather spend time in his room, watching YouTube, then with us. If he could eat every meal in front of his bedroom television, he would. We do force him to come out of hiding occasionally and bring enough dirty dishes with him to fill the dishwasher. Ha. This drives me crazy daily.

David. Well, David has never been the kid who wanted snuggled. In fact, as a baby, if he was crying and you tried to console him by holding him, it would make it worse. But put that kid down on his baby gym, and he would stop immediately. And today it's pretty much the same. If he's in a mood....it's best to just leave him alone. Occasionally we have to pull out the deep pressure. But he hates that. And as a mom, all you want to do is calm and console a child who is hurting, sad, or frustrated. But you just can't do that with David. This also drives me crazy almost daily.

They're both thinkers.

Kyle is deep. He is very into scripture and what that means to him. He insisted on a specific bible verse on his birthday cake. When I talked about that in therapy, she was blown away. People have always said he's wiser beyond his years. He's seen a lot of stuff. And been through a lot of stuff. But even as a baby, he was a thinker. He might not tell you what he's thinking, but you better believe that the kid's mind is spinning. It drives a mama crazy when he tells me what he's thinking AND when he holds it in!

David thinks. A lot. And man. I wish I knew what he was thinking about. Because I feel like I could solve the world's problems if only I knew what was going through that beautiful boy's head. I can see it in his eyes that he's got stuff on his mind. I can see it in his demeanor that he's thought about what he needs and wants. But he doesn't know how to tell me. Talk about driving me crazy.

They both bring me joy.

Kyle...….We fight. We argue. We have some hard-core stand-off's in this house. But......he makes me laugh. He makes me cry with joy. He makes me love hard. He makes me work hard as a mom. He makes me ME. His heart is good. He loves his family. He loves his animals. He loves this life. He feels hard and falls harder when his feelings are involved. David is his number one concern in life. As well as video games. He drives me mad. He drives me crazy in love with him.



David.…..We fight. We don't argue. But we definitely have some hard-core stand-off's in this house. (and he's normally the winner). But he makes me laugh. And cry. And I'm quite sure I've never known a love like his. He challenges me as a mom. Especially a mom who doesn't totally have it altogether. He forces me to have things together for him. His heart and mine are pretty much the same. He too drives me crazy in love with him.



All that being said.....both my kids are similar in the fact that they drive me crazy. Daily. I mean I seriously lose my s**t everyday because of them. But the happiness they bring me, trumps everything else. Everything. Nothing beats a happy mama who loves her kids more than anything else in this world. When I'm with them, when I'm without them. They drive me crazy. Crazy happy. Crazy loved. Crazy wild. Crazy life.

And that makes me joyous. And it always puts a smile on my face. Well.....eventually :)