Grief. Grit. Grace. Grief.

 It’s a cycle. Grief is a cycle that spins around and around and around. You wait for it to stop in one spot but it never does. 

I’ve been trying to not write only about grief. But it is what I currently (and forever will) know. So I feel like I’m qualified to speak about it. And if someone doesn’t wanna read it-that’s great. Just close the tab and keep on scrolling 😀

I’m forever learning in this new space I’ve been in. He’s been gone for 445 days and there isn’t a day where I don’t think about him. I think about his smiles. His laughter. His crying. His sounds. His weight. His crooked pinkies. His webbed toes. His cowlicks. His blue eyes. His life. 

Grit is a big part of grief. If someone says “you have a lot of grit”, it’s because I do. And I know I do. Because I keep showing up day after day after day for the people still in my physical life when some days all I can think about is the one I miss that’s in his eternal life. 

I still have a child here on earth. And I am so incredibly proud of him. He may be an adult now, but you never stop taking care of your kids right? He will always need me-even though he thinks he already doesn’t. I drive him crazy. But I know he loves me and I hope one day he will appreciate the fight I fought for him and David the last 7 years. That was grit as well. I tried my best and I KNOW I didn’t leave my kids, I didn’t try to have zero physical custody, I didn’t only see them 3-4 days a month. 

Grit is also fighting through that bitterness. There are things I will never forgive people for in the last several weeks of his life. And I can’t change it. But. I can try my best to recognize it and deal with it in a healthy way. Some days that requires a deep dig of the heels into the dirt to stop myself from letting that bitterness overshadow me, but it’s getting easier. 

And that’s where the grace (and a great therapist) comes in. I held David 95% of the 9,003 days he lived in this world. I felt his weight. I heard his laughs. I changed his diapers and I made sure he was fed. I loved him. Every. Single. Day. I showed up for him. I know twenty-four years old is no longer a baby or a child. But in our case, David was mentally 6-9 months old. So he WAS indeed a baby. Do you remember the years your children were little? Sometimes not sleeping well? On a schedule? Needed fed? Your life revolved around them and not yourself? Eventually they grew out of that and became more independent.  I never got that. I assumed I would spend the rest of my life caring for my infant adult and not knowing life  beyond that much. Imagine that. To have that yanked from you within hours one night. After seeing improvements and then your loved is is just…..…gone. 

My grace has become knowing that I can have joy even when I feel sorrow. It often goes hand in hand. Family get togethers-I’m happy, but I’m sad David isn’t there. Christmas-gift giving is one of my favorite things, and I love it, but David should have new hats and mirrors to play with. Some days I just give myself the grace to just feel the hurt. The weight on my heart is heavy with longing for him. I cry because occasionally I question if he was even real. And it’s only been just over a year. I feel guilty for that. For maybe thinking he was a dream. I’ve allowed myself the grace to know it’s OKAY to have the feelings of anger. Of sadness. And that bitterness. There is no specific time limit there. But I am not allowed to set up camp there indefinitely either. I feel. I talk about it. And then I try to climb from that hole and get back on solid ground. 

I’m trying to “do for myself”. I really am. I struggle leaving my safe zone of my house but I am going to try better. Get a little healthier and maybe eat a little better. Try to just LIVE. (I’m taking a trip to see my mom soon. It’s the first time I’ve flown without Moe or one of my sisters in a while….I’ll have to be responsible for getting to where I’m going instead of just following him or them trustfully around the airport knowing I’ll get where I’m going because they don’t let me down. LOL)  I’m still trying to figure out where I “fit in” in this world without the identity I knew for my entire adult life. I still feel like a special needs parent. But I don’t know where that fits without the special needs child physically here. 

I will never stop grieving him. I’m really only surviving because I don’t have a choice. I have David sized holes inside of me and I won’t ever fill those. 

It’s ok to always have grief. It’s really all about the grit and grace grief requires. 

What Happened?

I didn’t share when David was sick on social media. It was such a crazy and scary time for us. It just felt better to keep it within a certain circle. I didn’t hide it. But I tried to give him some dignity and grace and privacy throughout his 12 days in the CCU.

Most people assume that he passed away from respiratory issues, and ultimately he did. But the lead up to his passing had nothing to do with his respiratory system. 

Since the day David was born, we battled severe gastrointestinal problems. I promise you that I’ve had to do things for David that no mother has ever dreamed of doing with their typical child. This had everything to do with those issues and for once, his lungs were hunky-dory. 

David and I were so connected. I woke him up on 10/2 and immediately knew something wasn’t right. Yet I couldn’t put my finger on what was wrong. He was lethargic. But no fever. His blood pressure was slightly low. But something in his eyes. It wasn’t right. Moe had to take a work phone call and he went on a drive to take that call and I was hoping to be able to wait and see how David responded to some stimuli I was trying. Kyle was at work.  I called 911 within 6 minutes of  Moe leaving the house. The two first responders to my house were my husband and my son. I still wasn’t completely worried. This was a typical reaction for David with a UTI. Our local ambulance was already on a call so we had to wait for probably 15 minutes for another one to come this way. I had multiple firemen here at that point and again, I wasn’t too worried. 

When they arrived, I let Kyle handle lifting him onto their bed and gathered the usual things. My wallet, phone charger, his basket of meds, diaper bag, feeding supplies. None of this was new to me. 

We got on our way and I had Kyle call his dad. Moe got to the hospital shortly after we did and Michael wasn’t far behind. They did some bloodwork and urine tests and did tell us David had a uti and that’s what I texted my family. When we got to the ER, the doc did mention that his belly was distended, but again, gastro stuff wasn't new. And either was a distended belly. But the doctor did order a  CT of his belly. 

Within 20 minutes of that CT scan, our lives completely changed. The Dr asked what kind of life saving measures we were willing to take for David. Without knowing why the things were going on that were going on, I said we had to find out before we could make a choice. He was rushed into emergency surgery. Kyle had gone to class that day and Moe went to pick him up as soon as he was done. We knew he had a test that day and we didn’t want to call him with this kind of news. Michael’s wife came from work. And when we were all together, we had some really hard talks. I believe we were all on the same page. 

David did come out of that surgery but his chances were still not good. They didn’t close him up and had a wound vac. They kept him sedated and on the vent because he still faced another surgery. And when THAT surgery happened, he had more removed and I felt like his chances were possibly even slimmer. But that kid was able to be taken off the ventilator 2 days after that surgery. His eyes were open and he was alert and it felt oh so very very good to see his eyes and that tube out. 

We had a super long way to go. I was at that hospital every single day. Even when it was Michael’s day, I was there. We tried to alternate nights but that wasn’t always possible. Moe always brought me dinner. My sisters both came to see him. He was laughing hysterically at Nicole one of the days. One of the things we were FINALLY waiting to happened, finally happened and he was able to start EXTREMELY slow feeds through his gtube (he had been on complete gut rest this entire time, only getting nutrition through his PICC line in the form of TPN-total parenteral nutrition.) He was able to get more of his normal medications (no sleep for him for 4 straight days because he wasn’t able to have his sleep meds). He was actually downgraded from CCU status to a regular room status but there were no beds available so he just got to stay where he was and had amazing care. I told my sister not to cancel her trip to Mexico because he was doing so much better clinically. 

Until one night he wasn’t. He was fine. Then he wasn’t. I was by myself. It was a little before midnight. It was me and 2 nurses trying to figure out what was wrong. Then it was the charge nurse and another nurse plus me and 2 nurses. Then his breathing changed. Then the rapid response team was called. I heard them say there was no profusion. They were about to intubate him when a nurse we actually hadn’t met yet and wasn’t even assigned to David that night (but had stayed by my side the whole time we were going through all the previous steps) looked at me and said “I cannot tell you what to do. I know he’s full code. But I don’t think he’s coming off of that ventilator. And just talking to you for an hour about David and his quality of life, I think you need to think of the long term and I don’t think you want what that will look like.”

And I had to make a choice in about 15 seconds. His quality of life was gone. He would be horribly sad to be hooked up to tubes all the time. So I said no more. I wanted to go to comfort care for my baby. 

Then the room was quiet. Everyone left. Drs, nurses, respiratory. It was just me and my very advocating nurse. It was 1am at that point. I was trying to call Michael and his wife. I couldn’t get anyone to answer and finally got a hold of Michael’s mom. She was able to finally get a hold of him. I couldn’t get Kyle and Moe to answer. ALL of us were purely exhausted from the strain of the prior 2 weeks and they just slept hard. I finally called the officer I knew was probably on duty to come knock on our front door until those 2 got out of bed. Michael called me and was on his way and I had to tell him my decision and make sure he was ok with it. 

Then I got in David’s bed with him and just held him. Everyone made it in time to say their goodbyes. Kyle and I were holding his hands and Michael and Sarah had their hands on his legs and Moe had his hands on my shoulders. Michael’s parents and Grandma Marie were in the background of the room as well. While Michael and I don’t always agree on things for David, I do know David was surrounded by love when he took his final breath shortly later. 

The nurse was an absolute godsend. She went and got a canvas from the PICU and asked me if I wanted her to paint David’s hand, and had me pick a paint color. We stayed with him for quite some time and when it was time to leave…I couldn’t. I didn’t know how. She sat down next to him and put a hand on his leg and told me she was staying with him so I could go. 

Then came the phone calls to everyone. Imagine having to call your mom at 5 am her time to tell her David was gone. Just 3 months after my dad was gone. I called my sister who lives near her to go be with her. Moe got a hold of my sister in Mexico and I felt terrible having to tell her. It took me a little longer to get a hold of my sister in Springfield. And when my littlest niece saw her crying when she woke up, she immediately knew David had died. Jessi came to spend the day with me. Moe didn’t let me out of his sight that day unless I was with her. We had a clear sign from my dad that he welcomed David into heaven through songs playing on the Alexa. 

I’m still tired. I still dream of that night very very frequently. I still look at all the pictures and videos of David throughout those entire 12 days. I keep them to myself because I don’t feel the need to share them. He looked good. It was really hard to have no hope and then have so much hope because he proved them wrong for a little while. To then have the realization that ultimately  David had the final choice and I just voiced it for him. I miss him. Deeply.

I know I’m not the only one to lose someone. I’ve watched many moms I know personally and virtually lose a child and it’s a shitty club to be in. I won’t ever compare my loss to theirs. I won’t ever compare my loss to a loss of yours. All losses suck and I wish we didn’t have to feel them. 

I won’t leave you with a picture of his time in the hospital. But I will leave you with one of my favorites. 

Surviving Survivor Guilt

 The stage I’m in is officially survivor guilt I think. It might be worse than the angry stage I went through.  It physically hurts to be here in time without my baby. 

I have never in my adult life had any kind of freedom to be able to do regular things. It always involved me finding someone for David. Before his dad moved away, it was him. After that…sometimes Kyle. Sometimes my personal support worker. But it always involved ME making arrangements. Sending texts. Making sure supplies and meds were ready. Making sure David was changed and happy and clean and ready. Again. I was good at those things. I arranged my entire life around a little boy who was the official boss of my life. And I miss it. A lot. 

It started with one day me walking out the door free as a bird to just put my shoes on. And leave. I was driving to work. I had a full blown panic attack about half way there and had to pull over. I didn’t know what set me off. 

Moe and I made travel plans for this summer just recently for my sister’s birthday celebration. I didn’t have to look at a calendar. I didn’t have to beggggg for help to keep David. I just said “yes”  to the trip and the days. 

This last weekend I got up at 3am. Took the puppy out. And left my house for an entire 3 day weekend to celebrate my mom’s birthday in South Carolina. 

I’ve been working in his room. So slowly but a little at a time. I’m not really doing much in there, but trying to clean it up. I finally took his ornaments off of his tree and sobbed. His tree isn’t down yet. I’ll get there though. Today Onyx, our new puppy went in there and dug a hat out from under his bed and started chewing on it. Clearly David had already done a number on it in that department. And it was cute that Onyx had it and liked a piece of David.  

But ALLLLLL of those things. I feel incredibly guilty about it all. I think back to that day in my car on my way to work. I wish I still had to change him and give an update about him to his PSW before I walked out the door to work. I was extremely careful when I had to be mindful of how many hours I was gone a day to be able to have enough money to pay David’s PSW. I don’t have to do that now. 

Making plans to travel for a week without checking with his dad to see if he could help me is unheard of.  It took a ton of behind the scenes work to be able to leave David with anyone else but me for an entire week. SO much work. 

When I was in SC this weekend. I felt bad for having fun. And I had so much fun with my mom and sisters and mom’s friend. But the entire time, I was thinking I shouldn’t be able to have this much fun. My son died. I should stay sad all the time. It is extremely surreal that I didn’t have to call and check on him daily. 

I feel guilty about getting a puppy. While he’s distracted me immensely, he wasn’t meant to replace David. I feel badly that we didn’t get him when David was still alive. We had always talked about getting him a puppy to watch over him. I wish David had got to meet him. 

The guilt is strong. And I THINK it’s normal from what I read. My grief has been a little different through the stages than what is written. And it’s because I was so entwined in David. And he was entwined with me. And I loved him and still love him so so very much. I miss him. I wish he was here. I wish I still had to make my life revolve around him. 

I am trying to enjoy my days. He’s in my heart for sure. Sometimes I am happy though. And I’m trying to get through the horrible guilt of that. It’s always there. 

So for any other grieving mothers. I feel you deep in my soul. I feel you deep in my heart. I feel you deep in my mind. I don’t care if it’s new or if it’s old. No parent should have to say goodbye to a son or daughter ever. It’s not natural. And it’s so hard. 

But we can be ok. Even when we feel guilty….we can still be happy sometimes. I wish it didn’t feel like a crime. Because it’s not a crime to keep living. We will miss them forever but we have to keep living to keep their memories alive and be able to relive those happy memories. 

That’s it for today. Random ramblings about guilt. It stinks to feel guilty about something you’re not guilty of. 

5 Weeks and 2 Days

 

The title says it all . And yes. I’m counting. 

Grief is something I’ve been in the midst of since my dad passed away. And I kind of want to document it a little bit. If I can help someone else in the future, then maybe it’s worth it. And writing has always been calming for me. 

I’m still sad. Extremely sad. If you haven’t lost a child, honestly what you imagine it’s like…multiply it by a million. 

I said I don’t know how to live life without him and I still don’t. The nights are my worst times. My poor husband has seen multiple sides of my grief now. And I feel like a burden, but he assures me I’m not. I feel like people think I should be “moving on” now that the services are over. But I’m not moving on yet. Although I have donated his incontinence supplies and have someone in mind to give his push chair to as well as feeding supplies. That makes me feel better to be helping others because of him. I haven’t touched much of his room. I’m not afraid to go in there, but I find having the door closed makes it a little more bearable. And that’s ok. 

I cry a lot. But not all the time. But definitely at random times. I laugh though too and I am going through the motions of living my life but I feel like a shell of myself at times. While other times I feel normal. My anxiety is bad in crowds who aren’t my people. But I’m still going out with Moe. He is my safe person. And I feel bad he has to be that person for what can only be for the rest of our lives now. But that’s ok too. 

I worry about Kyle. He is doing well but I know he misses his brother. I send him memories on Snapchat of the two of them and I see him save them in his chat with me. But I want to coddle him and take care of him. And he’s 18. I tried to feel his forehead for a literal cold the other day and he had to remind me he is an adult. I don’t know how to not take care of someone yet. But taking care of myself seems really hard. That’s still ok. 

I am sad because I lost my child. He may have been an adult but he was my child. Just a baby in my eyes and many other people’s eyes. I had to make a decision that no one should have to make for their child, although David gave me enough of a sign that he didn’t want the quality of life his body would be left with after his long stay in the hospital. But I hated making that choice. And it’s ok that I felt/still feel that way. 

I miss him. So much that my heart can burst. But the fact is that it’s already shattered and I don’t know if it’s possible for those shattered pieces to burst any further. I actually still crave being able to hold him. But at the same time I’m not actually looking for him anymore. I know he’s not here. And that’s ok. 

The holidays are coming up. I am all over the place. I knew it would be different long before David passed away. Our family will be split for the first time ever at Christmas (except when I lived out of the country for a few years) and we are trying to make new traditions. I didn’t realize I would have to make those new traditions without David as well as my dad. And that’s super hard. I’m going to do it, but I might need some moments to myself while making new memories. 

I’m sad, but mad too. I’m sad and mad that he only had one Thanksgiving and one Christmas in our new home. I’m mad and sad when I go to a store and force myself to not look at baby toys for different things that I can put up that he would have liked (and I looked all year long because it was so rare to stumble on something new that he didn’t have).  And I think that’s ok that I feel that too. 

I’m putting a Christmas tree up in his room this year. Only with his ornaments, but I did ask each of my family to choose an ornament that makes them think of David to hang on the tree and we will decorate it at Thanksgiving this year. That way I can go in and see his ornaments from past years at a glance and remember those memories if I choose to. Will I do the same thing next year? I think so, but I won’t make any promises. And I don’t have to make promises. 

Again. Grief is more than a roller coaster. And it’s different for everyone. And I am so sad. But you might still see me smiling and laughing. But the hurt is still there. It’s not going to go away. It’s unfair. And I wasn’t immune to losing a child. No one is. I wish I could change that so no one ever has to feel this pain. 

With so many asking the only question they know how to ask me…”How are YOU?”, I just want to say…I’m ok. But I’m not actually OK. And that’s totally ok.

Many thanks to the ones who reach out daily. Every other day. Weekly. Once. It’s ok. I don’t know what to say to myself and you don’t have to know either. And that’s ok.

Dad

 

I read a eulogy today at my dad’s celebration of life. It was one of the hardest things I’ve ever done. For those who couldn’t be there, this is what I read. 

Dad

I have written this and changed it and let very few friends read it and changed it again. Only to rewrite it in its entirety. 

Let me tell you the definition of the word integrity from the dictionary. “The quality of being honest and having strong moral principles that you refuse to change” 

Now let me tell you the definition of integrity in my eyes. It would be Jack Millan. My dad. My hero. He was exactly the same definition of integrity from the dictionary in human form. When we were young we saw him work so hard, but with such strong morals and ethics, I honestly didn’t know some people don’t have those qualities. If you want something-you work for it. You don’t take a shortcut, you don’t cut other people down to get it. You EARN it. 

We didn’t always have a lot when we were younger. But I remember strong family values. We spent a lot of time with mom, but dad was working and when he was home, I remember steamroller, timber, bribes of a quarter to rub his feet and back, chocolate malts, the best omelettes, werewolf lane, failed ice skating rinks,sharing sorrentos cheese and sausage pizzas, and getting us a pool (probably his attempt to keep us outside while he was working from home). 

He was protective of us. Not in a crazy way but in the best fatherly way. Requesting me to be home from a first date on New Year’s Eve at 11:15 one time. Keeping a bat under his bed to scare off Mandy’s late night window tapping visitors (ok-that only happened once that he knew of. Only Mandy knows how many times that really happened)….and then in adulthood…..still protective of us right til the end. He told his nurse he wanted us to be ok. So we’re going to do the hard thing and be ok. 

Sometimes you don’t realize the importance of a simple moment until after the fact. I had a moment like that with my dad more recently. 

I got remarried in June of 2023. And there was a moment now that just sticks out to me leading up to that huge step in my life. 

On Memorial Day weekend my dad asked what we were dancing to for the Father/Daughter dance. 

My response was the we had already danced in 1997 at my first wedding.

(Backstory-we had been joking for the year before the wedding that this was not my first marriage and I just kinda thought he didn’t wanna do the traditional stuff.) 

Dad very quickly said he thought we should have a dance. 

I didn’t know at that time that he was sick yet. 

I poured over songs to have our dance to. I didn’t want any traditional father daughter dance song. I finally settled on one that I thought was fitting.

During that Father/Daughter Dance, 

I cried. More than I wanted. By then we knew he was sick. I got a LOT of words of wisdom in those 3 minutes and 35 seconds. He approved of my new husband. He joked-I think-that Moe was contractually binded to me and there was a no return policy. He told me he was proud of me. That I was a good mom to the boys. And in all the times that I know I disappointed him, I knew in that moment he knew that I learned something from each and every time that happened. 

So a word of advice. Dance with your dad. 

He loved us. He took care of us. And he showed us that until the end of his time. 

If you’ve learned anything from Jack Millan, let it be these 3 things-

Be proud, yet humble

Be kind, but have boundaries 

And have a giving heart.  Perhaps not with money, but with your time. 

So Dad-in a throwback to our wedding dance and some words of James Taylor-how very very sweet it was to be loved by you. 

24 in '24

 I've taken a long break from this blog. I have enjoyed my privacy and my boys' privacy is important to me. 

But something drew me back in this year to post for David's birthday and I'm still not sure what that something is. I've skipped a year of birthdays for both boys and I don't think you'll see me do another one for Kyle again....his wants and needs are more important to me than my own and while I'm very proud of him, he doesn't need a lot of recognition for him to feel fulfilled and that humbles me a lot. 

But my oldest baby turns 24 today!!!! And I cannot believe I've been his mom (or a mom in general) for that long! We grew up together. He is my sunshine and my moonlight. My swedish fish and my peanut butter cups. And a giant bowl of ice cream with whipped cream and a cherry on top!

Life drastically changed for us in the last 5 years. From separation through divorce through building a new home, a new marriage, and a new family......David has always been my constant. 

You know, it's our job to see our typical children from infanthood to adulthood and through those many changes that come along with that. I am very proud to have seen Kyle through all of that. But change is hard for me. So hard. 

David has changed through the years of course.....but it was always such a slow change and we did it together. When he is happy, I know what to expect. When he is sad, I know what to do. When he is sick, I know how to handle that. He is my consistent in my ever changing life and I am so grateful to him for grounding me and teaching me to be an entire different human than I thought I would become as an adult. I have so much more empathy for other people who are struggling because of him. I have so much more appreciation for simple things like sitting up or finding something in a laundry basket filled with toys because he still does it, and watching him, I know it's SO hard for him to do.  I can adapt to things not going my way because even though he's consistent, there is always a little tweak in his life that needs tended to. I am stronger for learning to care for him. Mentally and physically (although not exaclty in shape lol). I have a grand understanding of insurances (private and medicaid). I understand workings of specialists and nurses and hospital settings and dr's settings and convenient care settings. I understand all types of X-rays and ultrasounds and yet I still know there is so much more to learn in all these areas. I know how to make medications daily and make sure they're drawn with enough time to soften to make their way through the gtube. I employ a person to help care for him and am capable of showing someone how to do that. 

Long story short.....David is a Waymaker. He helped me build and pave a path for his progress. And in his progress, I have figured out who I am and my progress as an ever-changing adult. He is joy and light and the definition of a trooper who does hard things. I could not have asked God for a better first born son than what I received. 

Happy Birthday David Webb. "If you're good, then I'm good. We're all good. We support each other like that. Nuff said." -Author Unknown

KMW is 16

We've had a roller coaster of a year and Kyle turns 16 on May 9th to top it off!

He is as amazing as he is stubborn.

He is as typical a teen as he is completely unique. 

He is as happy as he is moody. 

He is as helpful as he is argumentative. 

I don't have a ton of words to say because he likes his privacy. But I told him until he's 18, he has to grant me this ONE time a year to have my sappy feelings noted in this blog that I've been doing forever now. 

He is David's bestest friend in the world. Hands down. He religiously takes him to the bus every single morning while I finish getting ready for work. 

He learned how to lift him this year and he can put him in bed. He asked to learn how and I am forever so grateful for that extra help. 

He changed his first dirty diaper this year and I literally cried with laughter as he texted me ever so dramatically while completing the task. 

He is so excited for his next chapter in life and I'm so excited to watch him grow. 

Sixteen is scary for a mama. But I reread the post I made for David's 16th birthday and because of Kyle, I get to live out the things I've missed out on with David and while scary, it's exciting and fun and I am forever happy to have him as my son. 

Happy 16th Kyle Matthew!! I love you!!!!

22

 

I was a baby when I had my baby. 

Literally. 21 years old and having a baby in a foreign country, trying to determine what they were trying to offer me for lunch in the hospital. The German nurses would come in and say "Mrs Watkins...your baby....wawawawawa" to let me know he was fussy in my 4 day stay with him there. 

And that was the beginning of our journey. 

David Webb. We grew together. We evolved together. We fought together. You taught me way more than I taught you. Because let's face it. You do what you want when you want. You do you of your own free will. If you don't want to be happy. You're not. If you want to cry. You do. If you want to be awake in the middle of the night.....you certainly do that with gusto. 

I quite honestly don't know who'd I'd be if I didn't give birth to you. I would be a shell with something missing, but not being able to pinpoint it. I could have a million "regular" kids and think I was fulfilled, but you'd be the secret that was missing from my life. 

You are officially older than I was when I had you. That's mind boggling to me. To think if you were typical, you could have been having your own children by now. (Although I would have encouraged you to wait a lot longer than I did!) 

You should be finishing college. Or working in a trade. Dating or married. Moved out and moved on from living with me. Except you're not. Because you're supposed to be WITH me for as long as I'm allowed to have you. Because without you, I'm not me. 

Some mothers would still be mourning all those things you're "supposed" to be doing. I suppose I did that for a long time. I'm not anymore. The son I thought about all through my pregnancy with you was just a fantasy for me. You are my reality. 

You belong to a lot of people in this world. So many people care about you. Teachers, classmates, your brother, parents, family, etc. I know you know it, but I don't know to what extent. It's massive amounts of people though. 

All I can say is thank you for teaching me how to grow up. And thank you for growing up with me. 

I love you David Webb. 22 looks good on you. 

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. 

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.