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. 

Cheers

2019.

It's been the year of separation. Change. Sadness. Self-discovery. Loss. Gains.

It's been so so hard.

I had actually written another year end post as a draft a few weeks ago.

I'm choosing to keep it as a draft for now. It's personal and a lot and perhaps I only wrote it for myself.

So here I am on New Year's Eve. Alone on my couch with music in the background, dogs barking, and my sweatpants on.

Very obviously not here are my children. This is the first time that I've never rung in the New Year with Kyle. It's oh so very hard.

Tonight would also ironically mark the 25th anniversary of mine and Michael's very first date.

And no matter the state of our marriage at this point (this is the year of separation.....'20 will be the year of divorce) I will always think of that night as the beginning of a chapter of my life. So I cannot look at it as anything but a positive thing. Ultimately my children came from me having that first date.

I hate New Year's resolutions. I actually despise them. Yet I've made them in the past.

Lose weight.
More organized.
Yell at the kids less.
Fold laundry straight outta the dryer.
Keep the house cleaner.


All of those have been personal ones of mine. And some I succeeded at longer than others.

But one thing I never made a resolution to do was to just keep going.

No specific expectations.

Just don't stop.

If you make one resolution this year, please do that for me. Just do you. You don't need to change yourself for the sanity of someone else.

I have always been the epitome of the person who wants to please everyone. Except myself.

I have no clue how to not have a soft heart and a high expectation for people to follow through on things. I have a hard time dealing with disappointments.

I know I have to lose people close to me to gain my own self-respect and self-love.

And I don't know if I am capable of reaching that goal. I can try to just have a harder heart. But I honestly don't know if that's in my nature to do.

I have no idea what the next year holds for me. For you. For my kids. For my family.

I just hope you all keep going no matter what happens.

One In Four

I have been stuck in a rut lately. I'm not talking about just not wanting to do my laundry.

I'm talking about laying in my bed not caring if it gets done or not.

I'm telling you this because someone else you know is feeling the same way today.

One in four people suffer from some sort of mental illness.

I suffer from extreme anxiety as well as depression. You don't "get over it". There is such a stigma associated with this diagnosis and it makes people not want to talk about it and pretend that it isn't there. Some people are embarrassed...... I know because I was.

I also have a 13 year old son who suffers with debilitating anxiety. For anyone who would like to argue with me that a child should be able to control and rationalize those kinds of feelings, I would have you spend a day with Kyle at school. We are trying our best to help him cope with these feelings.

While our anxiety probably began long ago, it was triggered about 3 years ago when we almost lost David due to sepsis. Kyle began having some behavior changes about 6 weeks after David got sick. At first we assumed it was related to his attention deficit disorder. But after seeing our dr and pinpointing certain struggles, we caught on to anxiety really quick. At first we just tried managing it with him going to therapy and talking it out. Last year he began taking anti-anxiety medication under the supervision of a psychologist who also took over managing his ADD.

About a month after Kyle was diagnosed with his anxiety I finally sought help for my own as well. Recognizing the fact that I wasn't ok was so difficult for me. I fought a war within myself. I finally realized I couldn't heal if I was pretending I wasn't hurt. I was crying over spilled milk every day. It was minuscule things. I began taking anti-anxiety medication and I can remember going in for my first medication check and crying because I felt NO different. And my dr explained that I had gone over 18 years hiding that I was truly suffering. We changed the dosage and added a booster and that seemed to help. I can't speak for Kyle......but the medication doesn't make me different. At first I couldn't even see where it was helping me. And then one day, I had an epiphany that I hadn't broken down in tears in probably a week. Going to see a therapist that I trust also helps me IMMENSELY.

When I started going through my divorce, those feelings of not being good enough came flooding back. I knew that I needed to address those feelings before they became so real I could no longer do anything for them. So now I have a situational anxiety pill that has been a lifesaver for me in high stress life situations.

I want you to know that there is NOTHING wrong with medication. There is nothing wrong with therapy. There is nothing wrong if one thing works for one person and another thing helps someone else. There is nothing wrong with finally seeing that life is hard and you might need help.

You might be surprised that I have depression and anxiety. I am one of the ones who normally can hide it. I smile and pretend that everything is ok. I don't ask for help because my kids are my responsibility and I will always take care of them no matter what my anxiety and depression is saying to me that day.

My goal is not to ask for sympathy. Empathy is nice. But also not totally necessary. I want to be held accountable. There are days that my anxiety might get the best of me. I know there are days that Kyle's anxiety gets the best of him. But I want to be able to find my own coping strategies and help Kyle find his. I won't use anxiety as an excuse and I am TRYING so hard to not let Kyle use it as an excuse.

I just want you to know that Kyle and I are one in four and there is NOTHING wrong with that.

Please have a caring heart. Especially at the holidays. You might not understand it. You might think it's as easy as shaking off an insult or a feeling of inadequacy. It is SO much more than that. Be a good friend. Teach your kids to be good friends and to have good hearts and good intentions. Teach them that there is a stigma with mental health and it can be really hard on a child to be so uniquely different that they put an unwanted spotlight on themselves for being different.

Don't feel sorry for us. Just be educated and caring. That's what this world needs more of. 

Who Would You Be

This time of year is hard on everyone.

But for the mothers of special needs children (in my case with neuro-typical developmental delays) it's so much harder.

Children with special needs struggle. The change in the household with the decorations, shopping in large crowds, the extra noise, the long days at special family events, etc. Those things can cause major meltdowns, crying fits, stimming, and other non-typical behaviors.

David is 19 years old. Mentally he's roughly anywhere between 6-12 months old. His fine motor skills are somewhere in the 3-6 month level. He loves to chew on baseball hats. He loves brightly covered mirrors. He likes to chew on these really small golfing towels.

Nothing a typical 19 year old teenager would be doing.

I do sometimes find myself wondering what life would be like if David didn't have the TELO2 genetic mutations that he has. I wonder what it would be like to not have the vast knowledge of genetics. Of gastrointestinal complications. Of seizures. Of IEP's. Of wheelchairs and adaptive equipment. Of suction machines. Etc.

Would David be almost a semester into his second year of college? Aiming towards a degree in some awesome field?

Would he love to watch and play sports? Soccer? Baseball???

Would he have a favorite video game?

Would he have a girlfriend?

Would he pick on and fight with his little brother?

Good Lord. I HOPE he'd be potty trained.


I used to plead with God to make him typical. To help him "outgrow" whatever it was that was impeding him in life. I wanted him to change SO badly. I didn't have the strength at 21 to know that this little boy was going to change my life.

David is definitely my best friend. When you spend so much time with an individual and constantly have them in your personal space.......you become soul mates. I know that sounds odd. But I bet a  million of my virtual special needs mamas would completely understand what I'm talking about.

I pray. Nightly. And 99% of the time I truly do thank God that he didn't listen to my prayers 17, 18, or 19 years ago. There is that 1% of the time that I question my ability to have patience with this kind of lifestyle. I question why me????

But I truly know that if David was going to college, dating, or anything else listed above.....he wouldn't be my son. He would be a stranger to me. David is David. There is no other person who is able to be my best friend.

And David makes me who I am. I'd be a completely different kind of mother had he not made such an impact on me. He's changed my heart in almost 20 years.

He is truly amazing. Both my boys are. And I am very grateful for them.

You don't "heal" special needs. You nurture them and make the best out of even the worst of times.