What He’s Taught Me

Some of my fellow special needs mamas are struggling. The holidays can be hard. 

Some kids, like David, can’t eat anything by mouth. They get their holiday meal through a tube. 

Some kids, sometimes like David, have a hard time being in an overstimulated environment and melt down. 

Some kids, like David, are so profoundly disabled that they don’t know why they’re surrounded by so many people, why they’re opening presents, or why their entire normal day has turned into chaos in their eyes. 

It took me a really long time to get past all of those things. I used to cry when I was trying to find toys for David. Because I still had to look in the infant section. When he was 8. When he was 15. Now.....when he’s 20. I buy hats for him by the truck load. Because he loves to chew on them. I look for soft toys with mirrors. Because there is something about the shine on them that makes him content. I buy him clothes. A 10/12 in pants now for at least 5 years. But they fit him. 

The holidays used to make me so sad at times. And maybe there will still be a fleeting sadness over me occasionally. I’ll always mourn for the child I thought I was going to have. 

But I am completely enamored with my son. 

He taught me empathy. Grace. Gratitude. Miracles. Happiness. 

He taught me to be strong. He taught me to advocate. He taught me to be a pharmaceutical expert. He taught me to be a nurse, doctor & caretaker all in one. 

He has NO clue that Christmas is close or that we will be waking him up to open gifts or that it’s Jesus’s birthday. He will give grumpy looks and possibly flip us the bird nochalantly all morning (I swear he really knows what he’s doing, and he pretends he doesn’t). 

But eventually he will smile. At some point in the day, he will smile. His dad will pick him up Christmas night and I know he will smile then. He’s loves his people and his people love him. 

Please just be empathetic at the holidays. I have many fellow You-Hoover Fong mamas who have far younger children than I do. And I can tell you....some of them are crying in the toy aisle right now thinking of the things their babies can’t do. And it takes time and healing to get to the point of acceptance. Think of them. Think of their kids. And know this. No matter what.....acceptance will come for them. And the love for their kids peresrveres every time.

He’s Making His List. And Checking It Twice.

So this is the first time I’m using the ap to make a post! I’m kind of excited! Fingers crossed I can figure it out! 

But I digress from my titled post.....

I said it in my last post. Things in this world have just gotten so hateful. In our country in particular. People being those specific things. Why? Why? Why? 

I’m a super non-confrontational kind of person. I will go with the flow to make things easier and people happy. But I will NOT stoop to hate. 

I think it’s fine to teach your children to respect themselves and to stand up for what they believe in. I don’t think it’s ok to teach your children to not be able to be an understanding person and look at both sides to each situation. I don’t think it’s ok to preach against hate and unfairness, but be unwilling to see the individualism in every situation. Because there are no two arguments/agreements/people/unicorns/puppies/or mythical creatures the same. 

I am soooo not perfect. I have gossiped. I have made rash and harsh judgements. I have disliked people. I have stolen (A $6 candle accidentally. It was 14 years ago at a Target...it got stuck in Kyle’s infant car seat while I was shopping and I forgot to take it out. I was mortified and ashamed for months.) 

But I’m pretty sure I’ve never hated. Oh I’ve been angry. And I’ve said so many things I shouldn’t have said. But I have NEVER tried to make someone else feel bad for their choices. 

I’m begging some of you (and I’m talking both conservative and liberal friends) to rethink what you’re posting on social media. I’m also thanking some of you for the respect you’ve shown others. 

Remember. Our human spawns are watching. 

And Santa. Santa is ALWAYS watching. 

So be good. Actually...be THE good ❤️ 

Bad Vibes Don't Go With My Outfit

 Happy Mid-September!

I think we can all agree that 2020 can basically suck balls. 

Except me. It is kind of a crappy year. It's put a lot of division in our world. The "discussions" on social media is driving families and friends apart. It's a year of covid and politics and don't think I don't believe those two things aren't related in some way. People are MEAN. 

'Cept I've decided to scroll on. For real. Bad vibes don't go with what I'm wearing on the inside anymore. Those mean people have broken hearts. 

I'm happy. I'm trying to set the example for the boys that they can be happy. Kyle is a negative thinker. Has a hard time shaking it off. And my example for him has helped to change his moods. 

We still struggle. We still have bad days. But I finally feel peace. And I'm hoping to rub that on to him a little more (when he will let me hug on him.)

I can't change his heart. But I hope I can change his vibes. He's an awesome brother and there is no doubt that he's not a teenager who strives to be like the "rest". He enjoys being an individual and sometimes that's hard and can make him a target for unpleasantness from his peers. 

Regardless of school and outside influences, I'm going to show him how to find his happy. He is so much part of my happy. 

David is doing good. And when his good vibes are in alignment, he is a light that you can't be drawn away from. He is pure magic and spark. 

When his happiness is out of whack, I'm learning to look forward to the next day and leave the current day in the past. Why live there?

As for me.....I'm past content and I'm happy and doing well. 

And if my happiness makes you uncomfortable, look the other way. I'm finally smiling for me again and my soul is good. It's not about the way I look on the outside, but the way I feel on the inside. 

I know that if I'm feeling low, that I only have to remember to flip the switch and turn on my light. 

If you're not rooting for me or for others, then you need to take a good, long look at your vibes. 

Maybe you need to look around the dark room you're in and find that light switch. 

Much peace and love to everyone. I can't help but feel this country is going to be in a bad vibe kinda place the next few months. 

A Bath

The candles were lit. The light was dim. She had her wine and soft music playing. 

Slowly, she shifts her legs and reaches over to grab his.....

His soap. Cause his soap works best to shave her legs. Where did you think I was going with this? 

I just thought I might get more male readers if this started out with a twist. If a woman is in the bath with wine, candles and music...chances are she wants to be left alone. Give her peace. 

This is a family blog. Let’s keep it clean people. 

And we’re going to talk about David. And HIS bath. 

This blue chair, or a form of it, has been part of our bathroom for YEARS. David cannot sit independently in the bath. This chair is a constant reminder that we do things a little different around here. I only have one bathroom in my house. If I shower...the chair is lifted out of and back into the tub. If Kyle showers...it’s again lifted out of and back into the tub. 

But if David takes a bath. It provides him a way to find joy. That kid LOVES his bath time. Smiles the whole way through. Laughs as soon as he sees me lift the removable shower head to rinse the soap from him. Absolute and utter pure JOY. 

Now. Let me tell you the process. It’s not all that different than giving an infant a bath....except this kid is 20. I usually strip him down in his room and do the cradle carry to the tub. (All while hoping he doesn’t pee on me.)  I very clumsily plop him into the bath seat and he curls his long limbs into a very fetal like position while I turn the water on and find the right temp. I then use the shower head to get him wet and wash his hair with his kid shampoo (cause there is no good way to wash his hair without getting soap in his eyes.) I rinse that out and then I try desperately to unfold his arms and legs to wash him well all over. (Again...with a specialty soap because he has weird skin sensitivity issues.) All the while he is smiling and laughing and enjoying the warm water. Which can actually make it harder to get him to cooperate because he’s so excited. When he’s finally washed and rinsed.....the tricky part comes. 

Getting him out. 😂

I use giant bath towels for him. I try to dry his hair and body off as much as possible before lifting him out. But his darn, bony clavicle acts like a well on either side of his shoulders. Which basically become large lakes. (Do you know how hard it is to dry a lake up with a BATH TOWEL?!) That giant bath towel get laid on the floor. Then comes the lift. It’s a different lift than putting him in. This time I’m dealing with a giant, wet whale. You know how squirmy infants and babies are after a bath? I’m doing the same thing with a 70 pound man. 

So very carefully and very ungracefully I hoist him out and pray my back doesn’t give. Lay him on the giant towel while his teeth are chattering. Quickly drying him off the best I can. And then comes dressing him. He’s still damp after a bath. Ever done diapering on a wet kid? Yep. Like that. But worse. He refuses to bend arms or legs.  He’s shivering the whole time. But laughing at me because I secretly think he knows he’s faking this disability and he has me wrapped around his finger. 

This kid makes it ALL worth it. Every comical step of bath time. Every lift, every soaked T-shirt I end up wearing after. It’s ALL worth it. 

Growth

Time for some truth. 

When a person chooses to end a marriage with 2 children to her high school sweetheart after 21 years, that does not mean she is automatically happy. 

It is GUT-WRENCHING for her. She made a choice that hurt her children, her husband, and her extended family. She went through the gossip mill and people making up their own stories about her. She cared what people said. That's how her heart worked. 

Let me tell you something. It's been about 15 months of therapy and healing and heartbreak and sorrow and learning. And huge GROWTH. 

I no longer care about what you might think. Because I know you don't know the facts. My heart is still, in fact, extremely empathetic. But.....I decided to put myself first and decide how things made ME feel. Because the way I feel is way more important than what you think.

My children. I have seen Kyle come leaps and bounds in the understanding of our life and I have seen a maturity start to emerge that was never there before. I care what HE thinks long before I worry about what the rest of the world thinks. He also goes to therapy to deal with everything that is going on along with his anxiety and ADD. He has learned to tell me when he's feeling down and while he can't always pinpoint why he feels that way......just being able to recognize it now means he has grown in his understanding of himself and his environment. 

My relationship with Kyle has grown and matured this past year. We fight (oh do we fight)......but it's different and I can't tell you how. But we tend to work things out fairly quickly in the end. Which didn't used to be the case. 

And then there's David. My sweet, innocent David. The one I turn to when I need a snuggle or some clarity about anything. The one who can bring me back to being humble when I'm being extra. The one who binds all of us together as a team. We do it for him you know. He teaches us humility and partnership and parenting and communication. 

My relationship with him and the way I take care of him has shown me so much. I'm learning to not be afraid. He's not. I'm learning to be more free. I am no longer thinking of him as a reason someone might not want to be with me one day to thinking that someone will be so lucky to know him that they want to be a part of us. He is really amazing and while he has rough days.....the good ones make up for that ten-fold.

Overall, I just want people to know that we're ok. All of us. We are all ok. 

I am content and happy and that's all that I can ask for. 

If you ever need me....I'll be the one worrying about herself now. Not what everyone else thinks. 

And that, my friends, is the real growth. 

Love yourself. That's the key to life. 

Fourteen In Quarantine!

My baby is turning 14! Kyle is seriously one of the coolest kids I know. He's horribly sarcastic. A bit of a butthole. And can be a drama king.

He's also loving and funny and sincere in what he says. He loves David, his dogs, mom, dad, Amy, Holland, and God.

Again.....he's not totally into the sappy and loving blog posts so I have started to include him in a lot of the things I write about him.

I asked some friends on Facebook to shoot him some questions about his life and his life in quarantine. 

1. Is your hair growing? Do you have enough for a man bun? Can you ever see yourself sporting a man bun?

Kyle's response: Does that answer your question??

2. If your face had to be a snapchat filter forever, which one would it be? 

Kyle's response:

3. What are your top 3 things you can't live without??

Kyle's response: David, Chase, and Gunner

4. Who has been your all time favorite neighbor family? (answer carefully)

Kyle's response: I know who said that. It was Michelle. And yes. It's the Zelharts

5. What is one thing you are not going to miss once quarantine is over?

Kyle's response: I am NOT going to miss homeschooling. It can go die in a hole. (LOL)

6. Who annoys you the most during quarantine?

Kyle's response: You.....wait that's not true.....Holland (apparently he's getting a taste of having a typical sibling at his dad's)

7. Do you remember to brush your teeth everyday? 

Kyle's response; Yes. Mainly. (I can attest that this is a fib)

8. If you can spend quarantine with the characters in any movie, what movie would it be?

Kyle's response: Wonder because that kid is amazing.

9. What's one thing you've learned about yourself while in quarantine?

Kyle's response: I think too much about things that don't need to be thought too much about.

10. If you could give 2020 a slogan for the first part of the year, what would it be?

Kyle's response: 2020. The Year of CoronaCrap

Happy 14th Birthday Kyle! The years have been long and hard at some times and so fast and rewarding the other times!!!!! I love you so much!!!

How You Doin?

Stealing my favorite Joey line from Friends for the title here.

Cause seriously.....how YOU doin?

These times are hard. On you and me and our kids and our parents and on business owners and on politicians and on famous people and especially on essential workers from medical personnel to grocery store workers.

I am overwhelmed trying to keep David safe, keep Kyle off screentime to a certain degree, and work when the kids are at their dad's and then you talk about homeschool???? Forget it.

Some of you are working from home and trying to homeschool and entertain little ones. Some of you have a strict homeschool schedule and that's totally fine. Some of you are like me and make your kids get up and login and check to see what work they have and trust that they're doing what they need to do. And literally just pray that what they turned in is sufficient.

We're all going to handle this in a different way. Some might resort to an extra glass (or two) of wine at night. Some might be napping more (my favorite way to handle this). Some might have to have a good scream and cry and then boss up and go on with your life. Some might have to cuss and throw stuff. You might see some meditating the peace right into themselves. Some might be baking more (I also might be guilty of this).

Any way you choose to approach it isn't wrong. I promise. You won't always feel strong and you won't always feel in control. Which is how I've basically felt my entire life of being a mother of a special needs child. The unknown.

We are in a world of unknowns currently. You have to give everyone grace during this. Be respectful.
Be helpful. Be aware. Those things are all FREE.

The memes make me laugh in this time. I kind of live for them at this point. I NEED to smile in the time of unknown. They might be annoying to you. Scroll past them and move on. People like me like to know that there is humor in life and sometimes they make me feel so much better about my hot mess of a world my life can be.

I pray at night. You might not. And that's cool too. The seriousness of all of this isn't lost on me and I do like to think that my faith will help me through. It's heavy to think about. And I'm a total empath and I feel for all those people I've never met. So I choose to do the only thing I know to for them and pray.

It's a tough world right now folks. Stay safe and practice sheltering in place as much as you possibly can. Let's make this go away faster. TOGETHER.

Because if we're not united, we're nothing against this.

What The Doctors Didn’t Tell Me

I am the mother of special needs children.

Yep. Both. Kyle has numerous little diagnoses, including severe anxiety and ADD. A lot of that stems from having a brother like David.

A few things I have learned over this 20 year journey.....are nothing short of something I’ve learned through self-discovery and parenting these kids. A doctor cannot prepare you for being the mother to a special needs child.

First. More than likely your child’s doctor is reading from a script. And is also probably not the parent of a special needs child. They see the symptoms and not the soul.

Mama....see your warrior’s soul. Your child’s soul is way more important than the symptoms and diagnosis. Cheer for that soul. Dig deep for that soul. Doctors and therapists know a lot. But none of them have had the blessing to gain what you have through raising and protecting your little warriors.

Second. Be prepared to learn. A lot. And research. A lot. Basically you are earning a degree in your child’s disease or symptoms that you will never get paid for having the knowledge of. Except from that beautiful soul you’re learning about. They will pay you in smiles and love. Also be prepared to know that no matter if a million kids have your child’s disease....or 20 kids have your child’s disease.....they are ALL different. They might have the same gene mutation. But they are individual people that came from their parents’ genes. They will not be the same as your child. Do not compare!

Third. Find your voice. No one else is going to speak for your child. Except for you. IEP’s. 504’s. Teacher texts and emails. I’ve had them all. For both my children. And at the same time I try to be respectful of the fact that these outsiders in our children’s lives don’t do what they do for the glory. They might be changing your child’s diaper at school. They might have to email you that your child with ADD has yet missed another turn in date for an assignment. They don’t relish in that. They do it because they love their job and they care deeply for your child. They want to see your child succeed and the see potential for your children. So show some respect to them. You can fight for your kid and remember kindness at the same time. I promise.

Lastly....you won’t be recognized for selflessness. You should be. You began this journey terrified of the ride and now you are an expert at roller coasters. I swear on everything I am that I see you and I know what you go through. I am recognizing you. I am cheering for you and your warriors. And never be ashamed to pat yourself on the back.


It’s all worth it. Every fight. Every sorrow. Every low. Because for all of those, there will be a win. There will be happiness. And there will be highs.

A Couple Decades

Two Decades. We made it. 

I think we're gonna go for another two decades.

Because I don't think doctors truly know your willingness to be alive. The fight you have in you is immeasurable. To put a time stamp on your life is so unfair. We really don't know what your future holds. 

Your spirit is unbeatable. Your smile is contagious. Your heart is pure.

You radiate joy.

I cannot tell you the connection I feel with you. I cannot tell you how close my soul feels to yours. We are a pair. And I cannot tell you how much I appreciate you as my child.

You keep me grounded. You keep me going. You keep me on my toes. You keep me at my best. You are my magic.

I want others to experience you. I want others to know you. I want you to share your heart with people so they can find peace in you like I do. Like your brother does. Like your dad does.

Keep smiling David. Keep being my light in this gray world. I need you more than you will ever know.

Happy Golden Birthday.

I love you David Webb

And PS.....I’m sorry I’ve been blaming you all this time for tearing up your hats so quickly. When the real culprit is Gunner. But you've never apologized for the last 20 years of diapers (some of which were extremely awful)......so can we just call it even?????

To Write

I never knew I had the ability to put words to paper. To make them make sense. To make people relate to them. 

In school.....writing papers was easy for me. I could BS my way through papers and make them as long or as short as they were supposed to be and fill them with information, wonder, or thoughts with little effort on my part. In fact, if I had applied myself to writing back when I was a teenager, I probably would have been blogging long before 10 years ago. 

Yes. This page began roughly 10 years ago. 

I had no idea why I did it. At first.....I just wanted to show people a glimpse into our lives. Without the social media filter. So I dabbled. I tinkered with posts here and there. Sometimes I published. Sometimes I didn't. 

Three years ago, we received David's official diagnosis of his genetic condition. 

I SEARCHED for information. I SEARCHED for families. I SEARCHED for answers. 

I found 2 articles with very little clinical definitions of TELO-2 mutations and You-Hoover-Fong Syndrome. 

I was so sad. I wanted my own little family of little YHF kiddos that I could love from afar and we could bond with. I wanted a little group of people we could relate to. I wanted a village of support for kids like my kid and siblings of those kids for my sibling of my kid. 

And there was nothing. 

So I used my written word. I figured out how to link searches of You-Hoover-Fong Syndrome and TELO-2 mutations to this blog. I started hashtagging the shit out of #TELO2 and #youhooverfongsyndrome on social media. 

And one day......someone reached out. And after a while, another person reached out. And shortly after that a few more reached out. I started a little facebook support group specific to OUR kids. We're still a small group. This syndrome needs more talk behind it to get a name on the board for research. I am TRYING. We are TRYING. 

And while I am still sorting my life out and healing in the process........I have this little group of people who take up my slack while I've got other things going on. They are now hashtagging. They are now bringing awareness. Some of them are getting ready to celebrate their very first Rare Disease Day (2/29) with an ACTUAL diagnosis. 

While I never knew my purpose when I wrote before.....I kinda do now. I want to share what life is like with a child with a TELO2 mutation. I want to share what it feels like to be a mother of a young man completely reliant on my care for him. I want to share our life so you can learn empathy and happiness and joy in my life. All while seeing that it's hard. I want you to understand what it's like to be a little brother to a kiddo like this. To have anxiety over the little things in life because he feels so big in life. I want to let you watch me rise and fall and rise again as a single mom to make sure you see that it's ok to rise and fall in your life. I want you to see our imperfections because you will definitely feel better about your imperfections. LOL

I want to share this kid with you. He's cranky today. But I want to share both his happy and his sad with you. I want you to feel his joy when he shares it with me. 

I want to Embrace. Empower. And Educate. All of you who bother to read. All of you who care. I just want more awareness. For David. For all my other little YHFS families. For other rare disease families.