My precious Benjamin was born with a birth defect called Laryngomalacia. It is a condition where the epiglottis is not firm and flops together and closes off his airways. So every time he breathed in, he would make a loud, high pitched sound
Here is a video I took of him right before his first surgery. We had run out of the tabs for his o2 so we had tape on one side! :) We figured we wouldn't need them in a few days.:
It was so sad.
When we went into the clinic at 6 weeks old, in the dead of winter, for his diagnosis, he caught RSV and nearly died .I know that sounds dramatic, but when you can't breath, you die. I don't think we realized how serious it was in the moment.
(The picture on the bottom was at his worst, he was even more miserable then he looks....in the middle, if you look closely, you can see his little nose bleeding from needing to 'deep suction' his nose so much... it was awful.)
Needless to say, it was a long, hard road full of sleepless nights, beeping pulse oximeters and many many tears.
BUT- I'm happy to report that my little powerhouse is finally on room air day and night!
It took 7 months to get here, but - I think we've made it to
the light at the end of the tunnel!!
He's loud enough where people who don't know Ben's situation give me all sorts of looks, but he's getting enough o2 in and he's happy and growing well! It feels amazing! :)
As things have been settling down, I have had a few moments to reflect. It was all such a whirlwind.
I mostly thought about my sweet Sammy and Claire.
This picture was taken after they had been away with friends and family for almost 2 weeks while they were both sick and Ben had his RSV.
I missed them so much it hurt. When they finally got home we were so happy! They were really confused about what was going on with Ben. We had tanks, and tubes and cords EVERYWHERE!
For a while I had to continually remind them that Ben's o2 tubes were not for jump roping and it was especially not a balance beam. At one point in the middle of the day, Ben's oximeter started beeping like crazy, we couldn't figure out what was going on. Claire had gone into the back room and switched his oxygen off! She wasn't trying to be bad, she was just barely 2 and really curious.
It was a rough and rocky road for them too. They saw me scared and crying more then I ever wanted. With ER trips becoming routine and a trip to the hospital in an ambulance,
they were scared too.
It was so hard to know how much they needed me, but I had to take care of Ben.
As I have looked back and wondered how we survived, I came up with this list of things we did to help Sam and Claire feel loved. Even this wasn't quite enough, but it was more then I had to give.
I'm typing this out in hopes that if someone else finds themselves in a situation when crisis hits, and just like us, you have NO idea what to do, that this will help a little.
I am absolutely, and obviously NO EXPERT. There were so many things we probably did wrong. We were under water and felt like we were wingin' it for months - but these are the things that seemed to have the best results.
6 Ways to Help Your Children During A Time of Family Crisis
#1. Let Go.... That's right, I said "let go!" That was probably the hardest thing for me. Let go of your struggle to allow people to help you. Let go of needing a clean house, especially when people come to visit. It was more important to spend what ever time I had with my kids... not the dishes..... It was a messy while. . .This will help them..
#2 Let your kids "let go" ... meaning ...
If your son wants to take that Iron Man toy around EVERYWHERE. Let him.
(This is Sam giving Iron Man a "bath" while I was giving Ben a bath)
If your daughter wants to be a monkey, morning noon and night, no matter where you are... let her.
If he is just certain that that cereal bowl with the plastic cups taped all over it is the PB and J machine off of "Meet the Robinsons" and insists on wearing all of the time... roll with it.
(He's quite the little inventor :))
And last, but not least... if your daughter is fulfilled by sticking her head out the window during a windstorm like a dog on a car ride... join in.
I'm not saying that they should be allowed to run a muck, but if there is something that is harmless even if it's not .... normal..... let them. Let them have something they can do that is innocent and makes them happy.
#3 It will be hard, and even seem impossible most of the time, but make one on one time with them a priority. It didn't happen much, but it made a world of difference when we were able to.
We did simple things. We went to dinner, went puddle hopping, went for a ride listening to their favorite songs, visited the pet store to look at all of the creatures... shared treats from little bakeries we would find... simple things that didn't cost much, but was good quality time.
#4 Let them be in charge of something. One day when everyone was napping, Sam and I talked. He was struggling.
I just ached for him...
then something popped in my mind, and without completely thinking it through, I said
"Sammy, our family needs to have fun, hu? Will you plan a party for us?"
... His eyes lit up "like the 4th of July" :) -
He was so excited! We went through the possibilities and he chose a beach party! Above all, he wanted popsicles and lemonade and they HAD to wear their swim suits. He helped cut out big suns and waves from butcher paper and made faces and fishes every where.
It was so fun seeing him so "in" to something.
It distracted him and made him feel important.
It was nothing big.. we ate goldfish, did the Limbo and ate some runny blue jello that didn't quite set properly. :)
This is Ben joining in on the fun! First time discovering.. "the rattle" :).
Sammy "swimming" in our "water" and Claire being as cute as ever.
(He was cold, but determined to wear his swim suit.. haha)
#5 Count Your Blessings. I know we hear this all of the time.. but it wasn't until this experience that I fully realized the actual power behind counting your blessings. This is something I posted to facebook after we had moved from our home into my inlaws basement.
"our family has been through absolute chaos for the past year and especially past 6 months. Our whole world has flipped upside down on us and it is affecting my four year old the most. We just recently moved and he is heartbroken. I think he tells me every day that he wants to move back and every time something hard happens, he'll say "this is why we never should've moved" .. well, last week he got really really sick - I have never seen him so sick before - it was his last straw. This poor usually energetic and happy boy was so sad. Depressed even. He's not sick any more but He just goes back into our room in the dark to lay down, he wants to sleep all of the time and I'll find him just laying down on the ground in random spots being sad. I'll make his favorite meals and offer his favorite treats and he just didn't want to eat. He didn't even want to go outside to play. Today I got everyone ready to go to the park and before we left the driveway he said his legs were tired and he wanted to go back inside... We continued on and he had some happy moments, so it was good, but I could tell he was still so sad. So, tonight at dinner we started talking about one of my favorite songs "Count Your Blessings" - it is a happy song that has helped me through some rough moments. We sang the song and decided to count our blessings- we got the camera and started taking pictures of the good in our world. Beds, toys, our family, then he said "church"- so to his surprise, we hopped in the van and went to our church and took a picture - we took a picture of the American flag and parks. We took pictures of shoes and ice cream. - Once he got started "counting his blessings" he couldn't stop - he has a whole list of things he wants to take pictures of tomorrow. We decided to make a "count our blessings" wall. I'm going to develop the pictures and hang them on a wall so when we struggle, we can go the wall that will be covered, i'm sure, in pure goodness from God. I have never taken that song so literally before and tonight for the first time in weeks, MY SAMMY was back. Mike and I sat on a bench with Ben watching Sam and Claire play at a park tonight as the sun set and honestly - amid life's billows and raging tempests- all was right in the world. It was a moment of perfection.... all starting from a conversation around the dinner table about counting our blessings.
#6 Hold them close. I felt like I had to keep leaving them for various medical reasons. I didn't want them to feel "alone." Whether you give them big bear hugs, or just sit with them and hold their hand during a movie. It wasn't until our "crisis" that Claire began to like to be snuggled. It's a reassurance that they are loved, and that you are still there. Put your hand on their back while they tell you something.. it brings you closer to them and lets them know you really are listening. Give them hugs out of the blue, have tickle fights. ... or simply let them play with your hair, or let them be the "doctor" and you the "patient" ... just be close.
I caught Sammy putting his arm around Claire while we were in line. Being "close." It made my heart so happy.
Well! There you have it! If you know someone who could use this, please share it with them. We are all just learning and getting a different perspective always helped me.