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 :)


Monday, July 2, 2018

Two Rooms

Thursday night I got hit by some gross, disgusting, terribly inconveniencing stomach bug. We've all had them. No fun. No one needs the details. Just know that if I don't have Demi Lovato's perky little body after all is said and done, I'm gonna be a mighty mad momma.

Around this house, when David gets sick, we flock to him. If anyone else gets sick.....we quarantine ourselves. Because to you or I, it's a little bug. To David it could literally mean life or death. Tell me I'm dramatic or being overly helicopter-mommish, and I'll shut you right up. You haven't watched your child almost die in front of your own eyes for something that can't even be explained to you. So don't talk to me. LOL

So that night......I went to my bedroom and left dad in charge. And if you're a mom, you already know that when mom is sick, the house falls apart. Michael did keep the children alive this weekend...….and held onto that playstation remote. Had some great bonding time with Kyle over a game of Ark though. But I regress. All that should be for another post. Anywho-I had to leave David at their mercy. Without his mommy. For 3 FULL days.



Have you ever given 100% care to someone and then had it taken from you suddenly? Yet you know he's so close and you can't get to him? My heart was in that other room. Two rooms away. I missed his smell. I missed his smile. I missed his diapers, I missed his meds, I missed his feeds, I missed his FEET (I know, I know. You all know my feelings on feet.) I missed everything. Did he wonder where I was? Did he think I was gone for good or I'd be back?



Kyle knew where I was. He occasionally poke his head in the door and asked how I was doing or to tell me some weird random fact. He made his own food. I'm sure it was no good.....but if he was hungry, I'm sure that he ate. I missed him too. But it wasn't the same as missing my third arm. That is completely how David and I are bonded.

Things can get scary around here. I'm still not totally recovered from whatever monster kind of stomach situation I have going on. Today Michael went back to work and I had to take David with me to work. I can try to avoid him all I want. But when you care so closely for someone, it means handling their medications, diapering, feeding, changing clothes, carrying, etc. Just try to pick up a 72 pound child and NOT breathe on them. So pray for us. Pray this passes a little more quickly. Pray David doesn't catch it. Pray the rest of the household doesn't catch it.


But if I can ask you one more thing to pray for...….I have many many momma friends who have their babies in heaven. And if I missed David only 2 rooms away, just imagine missing your baby from another world. Half my heart was 2 rooms away. Half their hearts are a lifetime away. Pray for them.


"Just Always Be Waiting For Me."
J.M. Barrie
Peter Pan


Friday, June 1, 2018

Filtered

I love Instagram and Snapchat and Facebook. If you follow me on any of those platforms, you know this.

Let's talk about Facebook. I use this platform to work my makeup business and keep in contact with so many of my virtual special needs mamas. On my personal page, I share private photos of my kids, and I leave the photos for my business open to the public. I try to stay positive on Facebook. Even when I'm having a bad day, I post a motivational message every morning in my private group. Just hoping that I can touch one person's day.

On Instagram, I'm much more real. I recently started using Instagram stories to show some of my day. Especially now that the kids are out of school. Having David with me 24/7 can often make for an interesting day. It's been fun watching us touch the world through our very small space in this world.  I do keep things a little more real on Instagram. I touch on anxiety. Mine and Kyle's (although now that Kyle is older, we are really trying to be respectful of his input on what I post). Real special needs stuff. I ALWAYS keep my makeup pictures unfiltered on Instagram to avoid giving a false sense about a product. Instagram is quickly becoming one of my favorite outlets and I love the more intimate feeling there. If you want to follow me there, you can find me @nataliew1978.




Then there's Snapchat. I LOVE Snapchat. I love playing with the filters. I love the way it can make me look 15 years younger (LOL-But let's face it-I AM going to be 40. In like 5 months. We all want a little Snapchat fun in our midlife years.) I love the time that it gives me with my 12 year old in the mornings while we wait for his bus to get to the bus stop. Honestly, that time with him is hard to come by in these preteen years and pictures with OR without your mother just isn't that "cool" anymore. Unless you involve Snapchat filters. THEN I become cool. Well......as cool as I can be considering I do not allow Kyle to have his own Snapchat. I even think sometimes David actually notices that he looks like a cute little animal or that there are hearts floating over his head.




I also use Snapchat to send funny things in my day to my closer friends and Michael. I mean, who doesn't want to see me looking like a cute rabbit 4 times a day? I'm hoping the text that I include on the picture makes them laugh or smile. Because that's often what I aim for. (add me at nwatkins1978)




But we all know filters are just that. They filter your life. They show what I choose to show. There is an entire side of my life my social media platforms don't see. They don't see me frantically trying to stop a Gtube from leaking. Or me having one of my bi-weekly ugly cries. (Carrie Underwood is correct. I CAN'T cry pretty.) They don't see me changing that disgusting poop and pee soaked diaper. Or me yelling at my youngest child to pick something up for the 57th time in 7 minutes. My temper is hot and my emotions are uncontrollable. But that who I am. 

And while I'd love to be the girl with golden butterflies floating around her head and her almost 40 year old wrinkles erased all across her face..........


That's not really me. I'm the mom with the hot temper and uncontrollable emotions who likes to make her friends laugh via funny filters throughout the day. But I should be able to like myself completely unfiltered and raw. I am fun, smart, emotional, hot-tempered, unorganized, messy, good-hearted, and I love my family like crazy. Me unfiltered is not always the best me. But it's me. 

(Unfiltered Me)





Saturday, May 12, 2018

Mothers (We're Not Really Superheroes)

*Disclaimer* There are a LOT of pictures with this post. Because I have that many spectacular memories with my boys.

Moms. They're described so many ways. Superheroes. Queens. Leaders. Healers.

I know I'm none of those things. I'm just a mom.

Becoming a mother was 100% the best thing I have ever done with my life. I was a YOUNG mother at 21. I had so many unrealistic expectations at that time.



David was my world. For 6 months, I was in new mommy bliss. Exhausted mommy bliss. The boy never slept. The boy didn't want to eat. But he was so happy. And so loved. We were a team from the start because Michael worked so much and we were in another country without any family. 

And one day-we had a follow up with a different pediatrician than usual after a 10 day hospital stay for a severe case of pink eye. Seriously. Hospitalized for IV antibiotics at 5 months old with pink eye. Had no idea that my world was about to change. 

This doctor took one look at him. She said "Your baby isn't right. There's something wrong. He's not like others." Keep in mind that this doctor was German. She was very blunt, but not unkind. I was 21. Alone. And in denial. 

Guilt. That's what happened to me. I felt incredibly guilty. Did I do something wrong? Did I need to do something different?  

We came home when David was 14 months old to pursue better treatment and testing stateside for him. 






I was no longer in denial. Still so young. But smart enough to know that my baby was definitely not typical. We went through years and years of testing with no real answers. 

And again......guilt. Always feeling guilty that I wasn't doing enough for David. 

We made the decision to have Kyle. It was a HARD decision knowing that what David had was most likely genetic. But we took a leap of faith. And when I was 27, Kyle was born. 




It was a difficult birth for me. I ended up having an emergency C-section. And again I felt guilty. While I was in recovery, I knew Michael was with Kyle......and all I wanted to do was sleep. And again I felt guilty. One of the very first pictures that Michael took of Kyle was of his little toes. Seems innocent enough, right?? But we had ulterior motives. We didn't know until David was 2 months old that he had webbed toes (talk about more guilt). Which is a sign of a genetic condition. And while we certainly didn't know that Kyle didn't have what David had.......seeing his perfectly separated toes was a slight relief to us. 



Kyle was so different than David. He was super serious. Cried pretty much the first year of his life. He challenged me. And I was exhausted. And again. I felt guilty. What could I be doing differently to make this kid happy? Why COULDN'T I be Supermom and not be tired and have all the energy in the world to be the perfect mom for these 2 kids??? 




Kyle didn't really notice David at first when he became aware......I think he just grew up and David was a constant that didn't interact with him.......so he didn't interact back. Little did I know how much Kyle was really taking in.





As the boys grew, I always wanted to do more. Be better. Be more alert. Be more loving. Be happier. 
And the guilt was always there. No one wants to feel like they're failing. 





The years continued to fly by. People don't lie when they say that you blink and the time disappears. We created so many memories with the boys. They were (and still are) my world. 





Before I knew it they were both in school. David was sick a lot with respiratory stuff. He failed a swallow study. And I felt like I failed him. Six months later, he had his gtube placed at age 9. In hindsight, we should've done it immediately after the failed swallow study. But again. Guilt. Guilt that he needed it and guilt that we didn't do it sooner. 





When Kyle was in second grade, he was having so many issues focusing. Again. Denial on my part. We tried SO many different things to try to make him more aware and more focused. And they didn't work. He was diagnosed with ADD in the middle of that year. We finally went the route of medication for him. And the guilt of that. I was embarrassed that I couldn't seem to get it right. Even though the medication was by far the best thing we've done for him. 






These kids are my world. You cannot compare motherhood to anything else in life. They lived in me for months and months. I held them for as long as they would let me (David was able to be held much longer than Kyle!) The emotions of motherhood are indescribable. 






They're growing up so fast. David is an ADULT now. And as a person with a compromised immune system, we've seen some scary times. But nothing as scary as January of 2017. This is where I often feel my biggest failure during this mommy-ing journey fell. I usually read him so well. I normally KNOW when he's coming down with something. I feel like I must have missed something to almost have him die before my eyes. GUILT. 

And again. Guilt because Kyle saw this all happen. Kyle was crying. I had to send Kyle off worried and afraid with a friend so I could focus on David. Guilt that a few months later, Kyle was diagnosed with anxiety. Guilt that I have anxiety. 

I know none of that time was my fault. Believe me. I know in my head that it was a weird, freak thing that happened, And I am SO grateful that we pulled through that time in a positive light. I know how fragile life is now. 

Which leads me to this conclusion. 

Those boys are my greatest accomplishment. Guilt is something ALL mothers feel. I have no doubt that no matter what kind of circumstances moms and their kids are in, whether it be a failed math test, the near loss of a child, or something we've seen numerous times in the special needs world-the actual loss of a child. As a mom you are going to feel guilty. 


But the love that invades you, overcomes you.........it makes the guilt worth it. It makes the world complete. Momming is hard, but so rewarding. I will never regret having David and Kyle. Even on bad days. They are part of me and their dad. My world is so much better being a mom. 


And Happy Mother's Day to my mom. If it weren't for her, I wouldn't be here and I wouldn't be able to experience my own motherhood. It kind of all started with her. 



And to my sisters. Who are mothers of their own babies and angel babies. We are so lucky to have one another. 


And to all the moms. Don't let the guilt overshadow the happiness that our children have given us. We all have it. We will continue to have it. Sometimes it will consume you. But don't let it stay. Have faith. We are ALL wonderful moms. 

Not superheroes.
Not queens, leaders, or heroes.

Just amazing mothers. I think "mother" means so much more than any of those other titles.