If You Wanna Know….

I’m going to be transparent. I LOVE Christmas. I love the lights, I love the joy, I love the giving, I love the family, I love the food, and yep…I kinda love receiving. 

I want to please everyone. I want everyone to be happy. I want it to be wonderful.

And cue David. Usually beginning with fall harvest, we begin to struggle with sickies and allergies that get bad. Like dr 3 times in 10 days bad. And moods and unknowns and just a bunch of other shit that I have no idea how to handle. It makes me tired and cranky and frustrated and wanna pull my hair out.

And what do you buy the boy who only plays with hats and mirrors? And won’t leave clothes on. And doesn’t understand a lick of WHY he has to be around extra people and out of his routine. He’s basically the opposite of me and is quite Grinchy. 

I am not the only mother of a special needs child that needs their routine, likes what they like, or struggles in the winter with illness. Sooo…kinda keep many of my friends in real life and virtual ones in your thoughts for the next few weeks. Our kids aren’t ok with this stuff. 

My mom ALWAYS made Christmas something to remember when we were kids. She’s always made it something special for us as adults. And for the grandkids. COVID changed everything last year and we didn’t have Christmas at my parents house last year. And this year we’ve had changes and the grandkids are getting older and while we’re going over there this year (YAY!!)….it’s going to be different.

My favorite day of the year will be great still. I will have my sisters and parents and nieces and nephews and in-law people and Moe. But I won’t have my kids this year for the first time in their entire lives and I’m sad about it. It’s reality and Kyle is older and their dad hasn’t had them for 2 years in a row because he’s been working and he totally deserves to have the boys and Kyle is excited. David will be David and I’m sure they’ll still have an amazing weekend and so will I. If this pandemic has taught me anything, it has been to adapt. We will be doing Christmas with the boys during the day on the 24th and they’ll be heading off to be with their dad that night and through the weekend. 

Learning to love this way of life is one of growth and determination for me. My boys have 2 parents who love them. Cheers to you and your loved ones and adapting to new things and celebrating the traditions that we also keep close to our hearts. 🎄❤️🎅🏻😍❤️

(Did I mention the food??? I love the Christmas food. I’m alllll about the Christmas food. It’s gonna be good food.) 

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.