Unique

We weren't supposed to get results to David's full exome sequencing until December or January. But we got a call about 2 weeks ago with results. For those that don't know, this test is one that we have been trying to get covered by insurance for YEARS. And we were finally able to proceed with testing this past July. The test sequences every known gene to find genetic abnormalities. It was our last chance to get a conclusive diagnosis for David. There is no further testing after this.

The genetic counselor's words: "They found nothing. It's normal. We're in shock." I have to tell you. I knew this was a possibility. We've been told every other test David has ever had was normal. When normal is the last thing you really see when you first see him. Our very kind & wonderul genetics doctor was pretty confident that we could have an answer from this test. But we don't. My heart must have been a lot more optimistic than my brain. Because I took this news really hard. I was quite literally heartbroken. I cried. I got mad. Because this test was IT. We have no other chances.

There could be some variances to the test. The genetics office doesn't have those yet. But they said if there are variances, they are on genes that are unknown. And that's why they weren't included with the initial results. They requested them, and we'll see what they say. But they won't give us an answer.

Some have questioned why we pursued such extensive testing. While we are fully aware that a conclusive diagnosis won't change our David Webb, it could change the way Kyle approaches having his own children some day. I hope Kyle knows that we tried so hard for him. Not knowing, he and his future wife will have to rely heavily on their faith to lead them to a decision. I hope he knows how much I prayed when I got pregnant with him & my faith persevered & God gave him to us.

I feel a lot better than I did two weeks ago when I got that phone call. I was so sad & disappointed. But then I look at David and marvel in the wonder that I get to love someone so unique. Kyle took the news well. His exact words were "I think it's so cool that David is really one in a gazillion."

Psalm 139:14
"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."

We are all works of God. So fearfully and wonderfully made.

Little Brother

Someone recently mentioned that Kyle was a great big brother. We laugh about it sometimes. Because he is really quite the younger (by 6 years) and littler (by 20 pounds) brother. But mentally....he is the older brother (by roughly 9 years). He fills both roles in this family. As does David.

 

Kyle is a great brother for David. He knows things that 9 year olds shouldn't know. Some heavy stuff and some not so heavy stuff. He is the one I holler at to go get me a bag if there is a surprise waiting for me at diaper changes. He is the one I have run to go grab me the syringe when I forget it at feeding times. He is the one I have to grab David's braces for me in the morning before putting his shoes on. He knows where extra extensions are. He knows where the gtube button pads are. I can easily direct him on getting me almost any medical supply because if he doesn't know where it is, he knows what it's called and what it looks like. He joined this world as a medical sibling. He doesn't know any different.

He is also a regular 9 year old boy. He likes to play. He can be rough. He loves video games. He loves to read. He loves to run. He really likes soccer. He likes being with his friends. He can be my sanity when I feel like it's missing.  He can be whiny. He can backtalk. He can take my sanity away as easily as he can give it back to me. He can be TYPICAL. Something I never knew until 9 years ago.

Sometimes I think he strives to just be average. He wants to blend in. He has a small group of really close friends, but is friendly with anyone who wants to play what he is playing. He is at that age when at home, we are so very, very normal for him. But I am starting to realize that when we're out of the house he is really sensitive to the fact that to someone else's eye we are anything but normal. I hope he realizes that we might not be the typical family in the eyes of others, but we are a family. One that has highs and lows just like every other family in this world. We are not immune to sadness or heartache. But no one is.

So to the Kyle of today: Be you. Be the little brother. Be the big brother. Be our child. Be a kid. Learn to be more amazing than you are.

To the Kyle of tomorrow: Be you. Be the little brother. Be the big brother. Still be our child. And you won't have to work to be amazing. You will be.

Snapshots

Family, friends, and acquaintances on my social media might sometimes wonder why I post so many pictures. They might be annoyed by it. They might unfollow me or unfriend me even. And that's all perfectly ok.

Here is my response to those that might not understand. I am capturing memories of my kids. Both of them. Alone & together. Moments we will never get back.

 Sometimes there might be a period that I post more of David. He & I are constantly together. On the weekends Michael is working, we don't venture out a ton. It's getting more & more difficult to go out by myself. So we hang out at home. And since he's the one that requires 100% care, he is often the one that I take more pictures of.

 

Occasionally though, you will see more of Kyle pop up. He's not a huge fan of having his picture taken. And he's sometimes incapable of being natural in front of a camera. But lately David hasn't been as happy. While I capture some of those hard days, they're not usually something I share on Facebook. It's a reality in my house that there will be those days, but I would rather share the joy that David can radiate. Often, when David is having a tough time, I find comfort in snapping happier pictures of Kyle. And yes. A lot of times I force him to come out of his cocoon of his bedroom solely for a photo-op. He hates it. But I love him.

 

The together pictures are even more rare than the ones of Kyle alone. But when we have those moments-the ones they're both wrapped up in-I have the strongest urge to capture every one of them.

 

I take more pictures now than I did 2 years ago. A lot of that reason is because of doctor's predictions on David's life expectancy. If he lives as long as the doctors say, I know I will appreciate my memories in my pictures. If he lives a lot longer than what they tell us, I will only have that many more memories to capture. 

Love it or hate it. These pictures are part of my heart. And I love to share part of my heart.

 

Life

I think I need a do-over of the past 4-6 months. Really. I've been looking at our situation in the wrong mindset. I've been letting the bad days consume my thinking. And believe me. There have been more bad days than good ones lately. David is having a tough time & we don't know why. More than one doctor is now telling us that in their medical opinion, David has lived over half of his life already. One doctor has said he believes he won't live through his twenties. I have a hard time facing that harsh possibility. It sits like a heavy weight in the back of my mind and in my heart.

 

 

I need to start living in the moments. Because even during his worst days, there are always good moments. At least one good moment. And if I'm only looking for and dreading the bad days as a whole, I am going to miss a lot of good moments. If I only have another 5-10 years left on this earth with both of my boys, I am going to try my best to enjoy the good in the days. I do not want to miss out on a life of good, or on some days, great things. Today was a good day for David. I can only hope that tomorrow brings more of today. And if not, I will remember that a day is made from hours and minutes and remember that something good will happen. Even if it is only for minutes.

 

 

I still know that sadness will sneak in. It's natural. Probably healthy actually. But I will pray that those moments are short-lived and happy thoughts will take over.

 

Because I know........I really do have a great and blessed life. I just need to look for it.

 

 

 

As Long As It's Healthy

We've all heard people going through pregnancy (I'm sure myself included) say "I don't care what I'm having. As long as it's healthy.".

Those words are spoken a lot. And chances are you WILL have a healthy baby. So maybe it doesn't really matter that those words were spoken. But to a parent of a special needs child, I need people to understand my thoughts.

What if the baby isn't healthy? What if that child has so many special needs it makes your head spin? We didn't know anything was wrong with David until he missed all of his milestones. He was 6 months old before we really grasped the severity of his needs and delays. It hit me like a ton of bricks. I was 21. A very young mother. But guess what? I dealt with it. I loved him. Those needs didn't matter. I took care of him.

When I was pregnant with Kyle, we knew we had risks involved. I never once said "as long as it's healthy" with this pregnancy though, as I'm sure I did with throughout my pregnancy with David. Because as much as I prayed this second kid of mine WAS a typical baby, knowing that he might not be, I would've handled it. Maybe not well at first. But I would've loved him because he was mine.

Believe me when I say that having a special needs child probably won't happen to you. But I didn't think it could happen to me either. You get what you're given. And if you do get an extra special blessing in the form of a special needs child, I can guarantee you that you will love that kid regardless. As a parent, you will do what you have to do to make sure that child is living a life that he or she is most capable. You will get through a LOT of bad days. But I promise there are good days too. I want David to have a good day everyday. His smile gets me through a lot of stuff.

 

 

Lately though, we've been going through a lot of bad days. More than a month of bad days, with the occasional smile thrown in. Yesterday was very bad. And I can't fix him. I am trying my best. But my best isn't enough lately. So we're just taking it day by day. And hoping that it gets better.

 

And I have faith that it will. He has no means to speak to us. The way he deals with frustration is crying. And biting. And crying more. Sometimes a change in position helps. But not always. Puberty has got to be hard on a normal teenage boy. But a boy who is mentally 6 months old in a 15 year old body? Forget about it. It's off the charts hard.

But I love him so much anyway. Both of the kids are so special to me. They both have bad days. I can reason with Kyle & he can talk it out. David can't. I'm trying to be patient. Sometimes I lose my patience and Michael has to take over. But I will ALWAYS love him. Healthy & unhealthy. Happy & cranky. If this happens to you, you would do exactly the same.

Please pray that our happy boy comes back soon. And remember that regardless of being "healthy" or "unhealthy", you will love whatever child is handed to you. I can attest to that.



Almost 9....Going on 21

Normally I don't do birthday posts more than a day or two before said birthday. But Kyle's birthday falls on a crazy-busy week at work for me, Michael is working pretty much non-stop, and David is just suffering from outrageous pollen allergies. And Kyle just left for birthday party number two for today, so I thought I'd just do it now, even though his birthday isn't until May 9th.

What can I say about this year for Kyle? Third grade has been awesome for him. While he still struggles with ADD, his grades don't show it. He has a teacher that he loves, and is working hard to please him. He moves to a different school next year, and I'm hoping for great things for him over there as well.

His personality is still the same. Strong-willed, yet sweet. Wild & crazy, yet he can sit & read a book without moving forever. Shy, yet outgoing. Kyle marches to the beat of his own drum. Always has & always will. I love that about him! (Most days anyway!)

He's still an awesome brother. When we're at the house I see him come out of his room and he always gives David a pat on the head. And David loves any attention Kyle throws his way. We had a rough April with David & the other day I mentioned to Kyle that David was smiling. Kyle went running into the room just to see because it had been so long since we had even a glimpse of a smile. There are days that we're out of the house & Kyle doesn't pay much attention to David, but I just take those moments as "typical" sibling moments. We have so few of those types of moments, yet everything in this house is so "typical" to Kyle. He has no idea how different it really is around here!

 

 

Kyle will always be a lover of anything outdoors. While I struggle at this time of year with David's allergies, which are severe, I love that Kyle can be outside more. He still digs in the dirt, runs around outside with friends, jumps on the trampoline, chases Chase around, shoots his bow, and rides his bike, scooter, and skateboard. I'm so thankful that he loves it outside so much!

 

 

 

 

Of course, I can't forget the love he has for Chase. All animals, to be honest. I told him he should be a veterinarian when he gets older!

 

 

 

And his random list of "loves" include, but not limited to, olives (black ones to be specific), tomatoes, popsicles, bad knock-knock jokes, Minecraft,  bike stunts, tree climbing, and being right. All the time. 

 

He's just a great kid. He has his moments when I want to pull my hair out, but what kid doesn't? He gave me such a great gift by just being him and letting me experience normal parenting moments.

 

 

HAPPY ALMOST 9TH BIRTHDAY KYLE!!!!!!

 

 

As much as he hates it, he will always be my baby and will always be his dad's tater-tot. Love him so so much.

 







 



 

 

Change

Change is hard. There are so many things in my world right now that I'd love to change. Unfortunately, there are so many things that I cannot change right now.

We'll start with Kyle. I've spent this entire spring break with him except for one day. He's been coming with me to work, running on the treadmill after I do, playing his video games (we won't say how much). We've had some struggles with some of his ADD issues. That is one thing I can't change about him. Help to control it though? Sure can. Through modern medicine and the use of some essential oils, I can SEE that we're helping him. Neither of those things changes who he is, or is a permanent fix for ADD, but I can see it helps him have some control over himself. It helps him succeed at school and succeed at home. He & I handled David's second seizure together as a team the other night while Michael was gone. I was so proud of him. He's growing up so fast (something else I cannot change!)

And speaking of David. Where do I begin??? I would love to change the new diagnosis of epilepsy. It sucks. It's scary and makes my heart race. I did a lot better during the second seizure than I did during the first one. But afterwards, I still fell apart. And I can't change it. It's part of him now and part of his label. I know that this diagnosis is just a small part of the bigger picture with him. Hopefully with medicine we can control these seizures and what they do to him.
His snoring has been an issue for the past several years. We're sure he won't sleep for a sleep study. We're pretty sure he wouldn't wear a C-PAP at night (although we might be able to get him to with some practice, luck & prayers). The doctor mentioned a tracheostomy. Which we're absolutely sure he wouldn't tolerate. So as of now, we're falling back on what we can try to control instead of change. Positioning seems to be the key to his snoring. If he's on his side, the snoring stops. So his new set up at night for sleeping can either be looked at as comical, crazy, or helpful. I'm sticking with helpful.
I can't change the prognosis we've been given for our boy. Twenty years with him just doesn't seem like enough time. So I'm just trying to control the quality of time we do have with him. And quite possibly by controlling and treating his symptoms, he could be with us for so much longer.

Then there's myself. I may not be able to change the world around me and some of the constants in it. But I can try to change me. I've been on the treadmill. A LOT. And I despise it. But I'm doing it to try to be stronger and healthier for my family. Kyle and I have taken the time to pull off some random acts of kindness over spring break. That helps me feel good about myself & what we're teaching Kyle. The emotional side of this life and the things going on had me so down for many many months. But thinking about that isn't going to change the outcome of what's to come. So I'm trying to focus on the good great things I have. Believe me. I'm still working on it. And will always be working on this last one. I really hope the changes will make us all better people.