Near-Drowning Tribe

November 6, 2011 | Updates

Life throws challenges at all of us. And somehow, we have to get through them. There are many tactics we use to battle through our trials. Some of them are simple and others, not so much.

Some of my favorites:

Chocolate
Cheesecake
A nice soft bed at the end of a hard day
Cute boots
Loud and uplifting music on a long drive
Committing with myself to just push through to the end of the day
Tears
Prayers
Scriptures
Church.

But in the end, the best medicine is someone who can truly understand. And in many of our challenges, that someone is hard to come by. I have relied so much on family and friends the last few years. But sometimes, it felt like no one could truly understand. And so, I would turn to my Savior. And I can tell you that He has ALWAYS held comfort for me in those difficult times.

But I do have to say that having someone here, on this earth, in the flesh, who can truly understand the things that I feel, is an incredible gift as well. And a few weeks ago, I spent 4 days with 14 of those people.

We call ourselves “The Near-Drowning Tribe”. We are all mothers of children who have been resuscitated after drowning. All of our children now suffer from anoxic brain damage.

We all live with things like:

Sleepless nightsA myriad of doctors appointmentsG-tubesTrachsOxygenSleep studiesSeizuresMedicationsTherapiesMedical billsFights for equipment

Diapers

FormulaSurgeriesProlonged sicknessesEtc. And…we all live with angels.

Being with these women for 4 days was incredible. And I can hardly wait to see them again next year!

I learn so much from them as we compare therapies and treatments we are trying with our children, share stories and ideas, and laugh and cry together. I could spend months and months at other brain injury conferences and never come away with as much information as I do when I spend a few days with these mothers. They have actual experience with brain injury. They know what works and what doesn’t. They are a vast source of information. And they are each INCREDIBLE.

One of my favorite songs (Coming Home by The Nashville Tribute Band) has the words, “I’ve never seen beautiful…like a journey’s end…when nameless faces become my best friends.” Ever since returning from my trip this year, I can’t listen to those words without tears coming to my eyes. All of the women in our group are of different religions. But we all know that one day, our children will be healed.

The words in that song make me think of the day when we will reach our journey’s end; when our children will stand up and walk towards us. And I know at that moment, I will look out at the faces of these women and know that they have become some of my best friends. They already are :). And I’ve only spent a handful of days with each of them.

What an incredible blessing!

Until next year, my sisters in this journey…

Back Row - Left to Right: Janet (Mom to Travis) , Sue (Mom to Luke), Lindsey (Mom to Santana), Tiffany (Mom to Abby), Kehau (Mom to Caleb), Amy (Mom to Jake) , Me (Mom to Samuel)

Front Row - Left to Right: Annie (Mom to Izzy), Dawn (Mom to Collin), Jill (Mom to Seth), Julie (Mom to Joey), Joanna (Mom to Ethan), Lisa (Mom to Brock), Shauna (Mom to Christian), Erin (Mom to Aidan)

Halloween 2011

November 1, 2011 | Updates

This year Halloween was a bit different for us. It’s so hard to dress Samuel in anything because he has so many sensory issues. That and, well, he’s in a wheelchair so it sort of limits the options. But I just couldn’t stand to send him one more time as something ho-hum. Sometimes, you just want your kid to stand out because they’re awesome, not because they’re different. So, I decided it was time to do something fun and that’s just what we did!

Samuel went as “Russell”, the little boy scout in the movie UP. He was more interested in the balloons during these pictures than he was in me. Isn’t he a cutie, though?

But making his costume turned out to be quite a task. And involving my other boys in it turned out to be quite fun. As I lay in bed last night, thinking of the day we had, I realized that I spent a ton more time this year WITH my kids preparing for Halloween than I ever have before. And you know what? It was fun!

The other discovery I’ve made lately is that sometimes I take Samuel places for my benefit, not his, and that I need to stop doing that. Samuel loves going to school, so I took him in his costume and he had a great day. He also seemed to enjoy trunk-or-treating because it wasn’t too cold yet and there were tons of kids there. But when it came time to go trick-or-treating door-to-door, I went ahead and left Samuel home. It was HARD for me to do. I like to take him with us as often as we can because I want us to be as NORMAL as possible and I want him to be  INCLUDED in life. But at the same time, he HATES the cold and thus, he would have HATED going door-to-door. Leaving him home to watch a movie was much more his style. I think I need to keep in mind that although it’s a good goal to include him in all that we can, sometimes it’s ok for him to do his own thing.

Another benefit that came from leaving him home was that I could pay attention to my other kids as we went around the neighborhood. And although we all love Samuel more than we could possibly say, sometimes, the other kids need their time, too.

Nathan was Thor. Well, he was Thor at school and for the 1st half of trick-or-treating. Then he changed into his Captain America costume. I’m telling you, costumes are the best investment with him. He dresses up daily as Batman, Superman, Buzz Lightyear, Thor and Captain America. He can pretend like no one else I know and he LOVES it. Honestly, so do I!

All in all, it was a great day! And, this year, I read a photo post that suggested taking Halloween pictures BEFORE trick-or-treating. Wow, what a novel idea! We always do the jump out of the car, gather round, smile once before heading off to get candy photo and I never really like it. This year, I took a little time with each kid and it was MUCH better! (I did resize them wrong when uploading them for this post, but I’m not doing it again, so you’ll have to deal with them being too large :).

If you know Ben, then you know that he loves anything to do with the army. He threw this costume together at the last second. The fake blood was all I had to buy for it. The helmet with the bullet hole was leftover from his Dad’s childhood adventures. Crazy, no?

Weston was the Men in Black…well, he was one of the Men in Black. His friend was the other. The funniest thing was that I kept telling Wes to stop smiling because he was shooting bad guys and you normally don’t smile when you’re doing that. He couldn’t help it. And if you know him, you know that is just how he is…can’t help smiling…all.the.time!

And that was Halloween.

Fall is hitting hard and the colorful leaves are almost gone. Snow flitters our way for a moment now and then. The warm clothes are out. I’m starting to make Christmas lists. And the fireplace is going each night. Keep cozy!

Love,

The Jewkes

Can I fit 3 months into 1 post? Sure I can!

October 14, 2011 | Updates

Hmmm, I’m not even sure where to start seeing as how I haven’t posted anything for nearly 3 months. Are you guys all still there? I am. I think. Life has been really, really hectic. Or, maybe I’m just older and it seems that way. Who knows. But here’s the short, short, short version of the last few months.

July was full of family reunions, camping and fun!

August was full of more family reunions, camping, fun and Tom’s 40th birthday party!

I might post pictures of those 2 months at some point down the road (if I get really freakin’ ambitious). But probably not. So don’t hold your breath. I don’t want to be responsible for that!

September brought the start of school. And then…Tanner returning from his mission. I have to post a few pictures of that!

The waiting…

(What you can’t see is the shear excitement bursting through all of us! I know the kids look bored, but I swear they asked me how much longer every single minute we were there. Grandma did, too, but I probably shouldn’t post that here. Whoops!)

The surprise! Literally! Tanner snuck up behind us as we all stood at the bottom of the escalators waiting for him to arrive. I literally turned around and screamed when I saw him. We were busy making small talk with the missionary that flew home with him, but somehow missed seeing Tanner. Not sure how THAT happened! Although I don’t think Tanner could have planned it any more to his liking. If you know him, you know he’s a huge tease and he loved that he surprised us all.

Smiles all around!

A few weeks after he got home, he turned 20! Wow, time sure flies! We had a fun party and are enjoying having him home again.

And that’s the last few months in a nutshell.

Samuel has been doing well overall.

He’s had a few seizures the past few months, but not enough that I want to increase his seizure medications. He has been throwing up more and we have to feed him small amounts every 2 hours in order to get enough nutrition in him each day. It’s a pretty big pain and I hope at some point he gets back to being able to eat bolus feeds (larger portions several times a day). He is growing taller, but we struggle to keep much weight on him. That’s always a big task since he is always moving and burning up calories. I have tons and tons and tons of new things I want to try with him and hope to be able to start some of them soon, but life seems to keep getting in the way.

The good news, though, is that he is pretty much always happy. When he cries, I know something is really wrong. About a month ago he cried for 2 days straight. I had no idea what was wrong and finally took him to the doctor. They said he had a really sore throat, but it wasn’t strep. So, we had to wait it out. No pain medication seemed to work. He cried for a few more days and then it was gone. I hate it when he’s sad.

But most of the time…THIS is my boy…just happy to be doing whatever we are doing. He is certainly a light in our lives!

Here’s to hoping you’ll hear from me again sooner than later :). Thanks for all your support!

Samuel’s Wall…

July 17, 2011 | Updates

Today is Samuel’s birthday! We’re not doing much because we have a bigger party planned with lots of family in a few weeks. But yesterday, I finally got some things made and hung on his wall and ceiling that I’ve been trying to get done for months. I’m happy with how they turned out.

I like these frames for several reasons. First, they were inexpensive and that’s always a plus! Second, I don’t ever want Samuel’s room to look like a hospital room and these definitely are too cheery for that. Third, I want Samuel involved in life as much as he can be and these pictures show that he does live life and enjoy it just like we do. Fourth, the pictures are mostly pictures I’ve taken and can be easily switched out as we take more. It reminds me how much I love documenting our lives and to DO SO (since I usually get busy and forget :)! And lastly, my favorite quote hangs with them and is a daily reminder to me to let God take the wheel and all will be ok.

I hope you like them! Samuel does and that makes me happy :).

Happy Birthday, my boy! I can’t believe you’re 8! You grow more precious every day…

This week’s adventure…

May 16, 2011 | Updates

On May 1st, I took Ben into the doctor. He had this weird rash all over his body, fevers on and off and a huge headache. The Instacare doctor told me it was a viral rash. Two days later, I took him to a different doctor and got the same diagnosis. I kept him home from school for a week hoping that would keep him from passing the rash to anyone else. This week, I sent him back to school. But, he kept complaining that he was tired, had a headache and chills.

On May 9th, Nathan got sick as well. He had fevers, headaches, a small cough, sneezing, etc. I figured he and Ben now had ANOTHER sickness. The rash was gone, so I figured this was new. The next day, I got sick. I had mostly the same symptoms, but my throat was killing me. I couldn’t eat. I couldn’t even sleep because it was so painful. But I figured I had the same thing the other 2 had and they weren’t complaining about their throats. I thought I was being a baby. By the 14th, I couldn’t take it anymore and drug myself to the Instacare. Quick swab of my throat, and I had strep. I drove straight home and got both of my sick kids. Took them back, quick swabs, and they both have strep. Honestly, I’m just glad to know. A round of antibiotics and I might actually be able to eat something. Plus, Ben is sick of being sick.

What I’m wondering, though, is did Ben have a Scarlet Fever rash way back on the 1st? I looked up some pictures of it and I think it’s definitely possible. I’m not gonna lie. That’s a bit frustrating. But at the same time, he never really said his throat hurt, so I’m not sure they would have thought of it as a possiblity. Hmmmmm.

 Since then, Wes has been diagnosed with strep as well as Tom.

Anyway, I’ll be taking Samuel to the doctor in a few days to have his throat swabbed just to be safe. Not sure how I could tell if he had a sore throat.

So, we’re all on antibiotics and now we just have really crappy coughs. So fun. Here’s to hoping the sun will come out soon and burn this crud out of us!