Archive for November, 2011
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
