Kyle is 15!

So today I get to share Mother’s Day with my favorite second born kiddo. And I’m completely ok with it. It’s happened a time or two before and it will happen a time or two again. 

I honestly don’t know what I can say about him that won’t be embarrassing or annoying or too sappy for him. He is completely his own person now and I respect that....but I’m still going to continue with posting for his birthday. Because it means something to me to look back on these and it will to him one day. 

He’s doing well in high school. He’s running track. He’s literally my right hand man in caring for David and I hope he knows how much that means to me. He actually asked me the other day if he should start seeing if he’s able to lift David. 

He loves spaghetti. Without sauce. Only butter. He loves burgers with cheese ON them. But don’t ever try to put cheese inside the meat. He loves seafood. But hates shrimp. He can run 5-6 miles and be fine. But he can’t seem to mow the backyard without aches and pains 😂 

He is the BEST thing I ever chose to do in this world. Weighing the options of possibly having another child with the same syndrome as David wasn’t easy. And man alive....God smiled on me with this one. Then quickly showed me that having a typical kid can be a million times more challenging than one with special needs. We argue and fight. And nag at each other. And drive one another crazy. 

But when we laugh, it’s so good. And when he’s serious, it’s so good. And we always love each other. And he’s pretty damn awesome. 

Happy 15th Kyle Matthew. 

I know all your parental people are pretty proud of 

you!!!!!!!!!!!

 

Cheers to 21! 🥂🍻

My baby is turning 21! 

It’s so different than I ever thought we would be celebrating him! 

All I can say is that David is the largest lesson I’ve had in my life and I could not have asked for a better lesson in true love, innocence, and determination. 

He is my hero in every sense of the word. I’ve seen him do things that his body tries to deny him the ability to do. Having the skills to do something as simple as choosing a specific toy from his toy basket requires so much trial and error for him. Yet...he gets it every time. We take for granted being able to walk. He manages to get anywhere he needs to go by means of scooting. 

He’s simply amazing. 

Turning 21 is a whole new ballgame for a special needs individual. All the programs and services provided to “pediatrics” (birth-21) are gone. So this a new navigational process for him and I. And it might be hard. But it’s well worth the years I get to have him on earth as an adult. Advocating for someone you love is easy. And natural. 

I can’t believe he went from my beautiful blonde baby.......

To my super handsome, chiseled looking adult 

I love you so much David Webb! You keep my world turning! 

New Process

 I love this space of mine. It has been such a release for me in the past to let my feelings out. 

I never quite knew why I needed to write. 

But it was to find our little genetically challenged TELO2/YHFS families. 

I didn't know that when I began this blog 10 years ago. I just knew I needed to get ourselves out there in hopes that maybe one day we'd find other families similar to ours. At first (and still), I made so many friends with other special needs families and learned so much from them. But still needed to keep looking. I never wanted to give up that chance to find an answer for David....and for my family. Even when I was at the bottom of the genetics pit with no way out because once you're given full genome sequencing and you get no answers......that was basically it. 

It took one miraculous year to find the gene that was eluding us. Two doctors who worked so hard for a family out east to find an answer for their three kids who were all displaying very obvious genetic issues. David's amazing genetics dr, who never gave up on us and worked for 14 years with us to keep trying to find an answer. And one phone call to tell me that when they reran that genome sequencing test for a "reanalysis" they found our answer. 

It took Michael linking my blog to a website search for TELO2 or You-Hoover-Fong Syndrome and me hashtagging TELO2 and You-Hoover-Fong all over the internet. I finally had families start contacting me. I finally took it upon myself to create a group on Facebook for support. We are still SO small, but our kids are SO mighty that I don't even care that we will never have a "cure" for this silly mutation. But we've found a true group who completely understands and can offer empathy and support in our posts. 

But living your life out loud in a glass house you built for yourself is a double edged sword. You start to try to live in everyone else's expectations. I share A LOT of information. But I didn't share was that having a special needs kiddo is hard on a lot of marriages and those fail due to lack of care with one another. It's nothing to be embarrassed about. But yet I was......because I tended to make it look easy on the outside. I have learned from my mistakes. And I'm moving forward and so is Michael. And we are both happy with other people. 

That being said.....my kids both deserve some privacy. The same kind of privacy I kept when I was going through my divorce. There are things about David and the affects the sepsis from four years ago that have wreaked havoc on his little body. But I need to respect that little body and keep it to us. Kyle one day will have an amazing story to tell I hope, dealing with his emotions and anxieties over being a special needs sibling. But he is almost 15 now. It's no longer my story to tell. He's a private kind of guy and I'm going to respect that right now. I am going to enjoy my new relationship more privately as well. I'm finding I'm not needing to post about anything and everything that goes on and I'm super happy with the direction my life is going in by not seeking recognition or approval from anyone else outside my very close circle. 

I will still get on sometimes to share updates and of course BIRTHDAY POSTS! (David's 21st is coming up in just 18 days!)

So for now...I'll sign off with this. 

We're ok. All of us. 

We're silly.

He's sassy.

He's pensive.

And I'm happy. 

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.