The most hectic month of summer…

August 22, 2008 | Updates

As I began to fill up the calendar at the beginning of summer, I started to become a little concerned. I began to realize that nearly every day from mid-July through mid-August was packed with something. Most of it was fun stuff, but even fun stuff requires work.

Well, it’s almost the end of August and we made it! I honestly didn’t know if we would. But the last 4 weeks have been jam-packed! And to tell you all about everything would really be torture :) (for you, that is). So, I’ll just give you a bunch of pictures and a somewhat condensed version.

Event #1 – Five Days in Joe’s Valley (July 23rd-27th)

· Camping in the middle of nowhere with no electricity and no water with a bunch of family is the BEST way to get to know each other REALLY well :).
· Taking a motor home that does have water, electricity, a fridge and air conditioning is a life-saver!
· There aren’t many places in the world prettier than Joe’s Valley.

· Children and dirt seem to cling to each other like magnets.

Samuel faired very well at Joe’s Valley. For the most part, he was calm and content to sit outside with us or watch his movies in the motor home. The other boys had a blast with their cousins. It was a fun trip.

Event #2 – Summer school came to an end (July 31st). This was a VERY sad thing for us as we LOVE Samuel’s preschool teacher and didn’t want to let her go. Let’s hope next year’s teacher will be good with Samuel, too.

Event #3 – Reunion at Bear Lake (July 31st-Augst 3rd)

· Yes, one family can literally have 5 or 6 reunions PER summer. I know it seems impossible, but we really just like each other!
· Mosquito bites are annoying for most of us. For Samuel, they are just WRONG! A mosquito somehow made it into our motor home and literally ATTACKED Samuel during the night (despite bug spray the afternoon before). The results were unbelievable – a swollen face and neck to the point where we had to go to the doctor and put Samuel on steroids to bring the swelling down. Can you say “Mom is REALLY paranoid about mosquitos and Samuel at this point”? (This picture is hours AFTER the steroids were given when the swelling had gone DOWN! See how his neck is swollen, too?)

· Spending day after day at the beach can never be a bad thing – unless you’re hungry (reference the last picture in this set).

         

Samuel was incredibly good at Bear Lake despite the massive “GROWTH” on his face from the mosquito bites. It took nearly a week for his face to look normal again even with the steroids :(.

Event #4 – Trying out Cranial Sacral Therapy (August 7th). We’ll have to get back with you on this one as we have only had one session so far. But the lady was very nice and dealt with Samuel despite his wiggling. This was in the midst of him feeling horrible which we decided was most likely from constipation. But despite all that, he slept well the day after his first appointment. So, we’re hoping this is good stuff :)!

Event #5 – Register one kid for school

Event #6 – A Trip to Idaho for my Sister’s Wedding Reception and Family Pictures (August 8th, 9th & 10th)

· This trip I had been anticipating for months – LITERALLY!
· Introducing yourself to your sister’s new stepchildren as their aunt is actually pretty entertaining. First, they look at you like you’re crazy. Then they realize you actually might be telling the truth. And then they laugh a little awkwardly because they aren’t quite sure what to say (or maybe they’re not sure they like the idea)!
· Being excited for pictures for months is probably not a very good idea. Stressing about what everyone is going to wear; coming up with just the right thing; worrying about mosquito swollen faces or black eyes being in the picture; driving 5 hours away; and somehow getting everything to work out just right only to find that the one kid you really wanted good pictures of is REALLY mad can make you really depressed. We didn’t get ONE smile from Samuel. Not one. Honestly, it really threw me for a loop. But, maybe, just maybe, a few pictures will turn out. Oh, I hope so…

Event #7 – Eagle Ceremony for Oldest Child (August 10th)

· Seeing your first son receive his Eagle award is very satisfying!

· Realizing there are 4 more boys behind him is a little stressing.
· Knowing that one day you will have 5 Eagle pins on your shirt from all these cute boys is exhilarating.
· Watching an American Flag be retired is one of the most awesome ceremonies EVER! If you get a chance to see one – don’t miss it.

Event #8 – A Day at Primary Children’s (August 11th)

I already posted on this day. It was the day we realized why Samuel had been so upset since our return from Bear Lake 8 days earlier - constipation.

Event #9 – Register another kid for school

Event #10 – Trip to San Diego for Additional ABR Training (August 14th-18th)

· ABR training is very intensive leaving little time for sightseeing, which is a HUGE bummer when you are literally minutes from the ocean.
· Going to San Diego and never laying eyes on the beach is sort of wrong on all fronts. At least we got to go to the zoo!

         

· The Ronald McDonald House in San Diego saved us – literally. We would have been out a good $600 if we had to pay for a room to stay in. The RMH put us up for the entire trip for free.
· Never rent a car from Fox Rental in San Diego. Just take my word for it…
· Children with disabilities are some of the cutest children in the world and going anywhere where you can hang out with a bunch of them is always inspiring.
· Meeting a 3-year-old girl with severe cerebral palsy who is completely nonverbal but can read at a 4th grade level and spell just as well is not only humbling, but awe inspiring. Thank you, Heaven, for showing us what you can do and inspiring us to keep teaching Samuel to read!
· California must have some crazy law where establishments are required to post large notices if anything, anywhere in their building might possibly by some slight chance cause you cancer. My favorite was the sign at the front of Chevy’s Mexican Restaurant warning that some of the ingredients in their food and drinks are known in the state of California to possibly cause cancer or birth defects. Funniest part was how we laughed about it and then downed tons of chips, salsa and other yummy food. I guess we’re all going sometime anyway. We might as well enjoy it while we can!
· There are a lot of Spanish speaking people in San Diego. Took me a long time to figure that one out. (Duh, it’s just minutes from the Mexico border.) My favorite guy there, though, was the Chinaman selling Mexican stuff. I love it when cultures collide!

Samuel was VERY good on our trip to San Diego. I didn’t give him any medication for either the flight there or the return flight. He slept most of the time both ways and otherwise, was very good. On the flight there, as we were landing, he starting laughing HARD in his sleep. It lasted several minutes. It was WONDERFUL! I don’t remember the last time I heard him laugh. I’m pretty sure the sound is comparable to hearing angels sing.

Event #11 – Tom’s Birthday

Poor guy didn’t get much of a celebration with things being so hectic. I hope he knows we love him, though. He did get a cool shirt that anyone who knows him will know he needed. It states, “I’m not opinionated. I’m just always right!” Enough said.

Event #12 – Register boys #3 and #4 for school

Event #13 – First Day of School

Jury is still out on this one, too. Samuel has a new teacher this year and by new, I mean REALLY new. She’s only known about this job for about a month and she has a class with 10 kids ranging in age from Kindergarten to 5th grade and most of them have profound disabilities. She seems a little overwhelmed. If she wasn’t, she wouldn’t be human. So, we’ll give it a few months and see how it goes. Samuel was all smiles the first day, though :). I think he couldn’t figure out why mom stayed at school all day with him. You know me, though. There was no way I could send him off to a new class alone. Besides, it’s a good excuse to hang out with a really cute kid!

So, that’s the last month in a very large nutshell. We’re hoping things slow down a bit now. We’ve got a few fun goals. One being lots of ABR hours and the other being teaching Samuel to read. Throw in some hyperbaric sessions (we hope), some cranial sacral therapy and me researching a few new ideas and we should stay pretty busy.

We hope your summers are all winding down nicely. I hate to see the warm weather go. This year has been so nice! But, I could use a little more structure in our lives. At least for a little while! I’ll leave you with another favorite picture of mine - Samuel as a fly at the San Diego zoo…

Love,
The Jewkes

Quick Update…

August 12, 2008 | Updates

I don’t have a lot of time to post tonight.  There is just SO MUCH going on.  But I wanted to thank you all for all of your well wishes and emails of your concern for Samuel.  Yesterday, we spent the day at Primary Children’s hoping to figure out what was bothering Samuel.  They refilled his baclofen pump and raised the dose a bit (just 10 micrograms per day).  Then they x-rayed the catheter going from the pump to his spine to see if they could see a kink or a split in it.  They couldn’t see anything wrong.  (I tell you though, seeing x-rays of that huge thing inside Samuel’s tiny body makes me sad.  It just looks so very overwhelming inside him.)  The radiologist did note that there appeared to be a moderate amount of stool in his intestines as seen in the x-ray, so we brought him home and gave him an enema.  (I know…too much information.) 

Anyway, that didn’t seem to do much, but this morning, he was retaining urine again, so I gave him a suppository to get him to have a bowel movement because that usually causes him to urinate also and it’s a much easier fix than putting him to sleep at cathing him.  He then had 2 really messy diapers throughout the day and tonight, he seemed much better.  So, I’m guessing it was constipation afterall.  Seems weird since I give him a suppository daily, but I’ll be watching him more closely on that front for awhile until I’m certain we have it under control again.  It could’ve been the small increase in his baclofen, but I sort of doubt it.

So, things are looking better.  Let’s hope tomorrow brings another good day and then we’ll know we’re on the right path.  I have so much to write about and so many new pictures.  Since mid-July, we’ve been to Joe’s Valley, Bear Lake, Boise, summer school ended, my sister’s wedding reception, Tanner’s Eagle award ceremony, started school registrations and cranial sacral therapy.  It’s been crazy.  And today, I think I pulled the head of a tick out of the heel of my foot :O.  I’m a little worried about that seeing as how that foot has been bothering me for 6 months now.  Hopefully, I’m wrong and it’s just some poppy seed sized rock or something.  Weird, though!

So, that’s the short of it.  I’ll leave you with my favorite picture taken at Joe’s Valley of Samuel enjoying the nice weather in the beautiful greenery.  I didn’t take the picture.  A family member who does professtional photography did.  You can see her stuff at www.staynerphotography.com.  Enjoy!  And thanks for the prayers!

Love,

Teresa

Sometimes…

August 10, 2008 | Updates

I have a lot to write and lots of new pictures.  But I can’t really bring myself to do it tonight.  We’ve had a very busy few weeks.  And we have a few more busy weeks ahead until school starts and things settle down again.  But right now, I’m just tired - so very tired.

I don’t know what is going on with Samuel.  He’s been so “off” for over a week now.  And I don’t know why.  I spent all day Thursday running him to the pediatrician (found nothing) and having his ankle x-rayed because it was swollen (found nothing).  It was a sad attempt to try and figure out what is bothering him.  It’s been 8 days of severe agitation.  Eight days of me wanting to pull my hair out because he is so unhappy and there is literally nothing I can do about it.  I’ve checked his bladder.  I’ve made sure he isn’t constipated.  I’ve tried tranxene.  I’ve tried baclofen.  I’ve even changed his seizure meds around to try and help.  Nothing.  I’ve ruled out ABR being the problem.  I don’t think it’s any of his oral meds.  It could be his baclofen pump, so we have an appointment for that tomorrow.  But what if it’s not.  I don’t think his stomach is upset.  I don’t think it’s gas.  No fever.  Maybe it’s a splitting headache - but for 8 days?  I doubt it.  Aaaaauuuuurrrrggggghhhhh!  You know what?  I can do all this when he is happy and smiling.  But when he’s not, I’m a basket case.  Sometimes…I want to hide away in my bed with the covers over my head and hope that somehow it will all go away.  We’ve been through a lot and come to terms with a lot.  But I don’t know if I will ever be able to come to terms with watching my child suffer while not being able to do anything about it.  I’m not sure anyone could come to terms with that.

Hopefully, tomorrow will be better.  I not asking for much.  I just want him to be comfortable and happy.  I just want to know what is bothering him…  Not quite sure how I’m supposed to go about figuring that out, though.  Maybe I can learn to read minds?  Probably not.  We could use your prayers.

Love,

Teresa

I Love You, Too

August 3, 2008 | Updates

Tonight as I sit to write, I hope to be able to convey the story I have to tell with the feeling and intensity in which it happened. And most of all, I hope to be able to thank a stranger who listened to the voice of the Holy Ghost and touched my heart so deeply that I will be eternally grateful.

We spent this weekend up at Bear Lake (which is a whole story of it’s own). But this morning, we woke up and decided to attend the local LDS church. So, we all got dressed and headed off for the 11 am Sacrament Meeting. Only trouble was that when we arrived, there was a sign on the door stating that they only held the 11 am meeting on holiday weekends and that on other weekends, the meeting did not begin until 12:30 pm. That left us with 90 minutes and nothing to do. After some debating, we decided that we would attend Relief Society and Elder’s Quorum for the next hour and that would then just leave a small gap before Sacrament Meeting began.

So, Carole (my mother-in-law) and I headed into the Relief Society meeting with Samuel in tow. The meeting began with the woman teaching explaining that there had been a mix-up in the teaching schedule and she had just found out that morning that she had to give the lesson that day. If any of you know Relief Society, then you know that would be a huge problem for any woman because you need weeks in advance just to prepare for your lessonJ. Well, this woman worried and wondered what she would teach and how she would prepare with such little notice. She soon felt impressed to teach a lesson on listening to the promptings of the Spirit. And when she picked up her Ensign to find some material for the lesson, she opened right up to a talk on that exact subject – confirming to her that she was on the right track.

She then proceeded to tell the story in the Ensign about how it is important to listen and to act when the Spirit prompts us to. After she finished, she opened up the pulpit to anyone wishing to come up and share an experience of how listening and acting on the promptings of the spirit had helped them in their lives. Several women got up and shared personal stories. And as they did, the theme in their stories seemed to run together. They each shared some way in which either they were touched by the simple acts of others or they were able to touch others by their simple acts. And the acts were always preceeded by a feeling that they should do something small for someone else.

It was a good meeting. But I had decided to hold Samuel during it (as I don’t often get a lot of time to just hold him on my lap and I enjoy it). And although I was listening to all that was said, I was also spending a lot of time enjoying his company. And, although I did think of some personal stories of my own, I did not feel prompted to go up to the pulpit. I considered just taking Samuel up with me and sharing a story from our experiences together, but the prompting just wasn’t there, so I didn’t.

As the meeting began to wind to a close, a woman came up and sat behind me. She sat on the edge of the bench behind me and leaned forward so she could whisper something to me without disturbing the others. I had never seen this woman nor had I ever been to this church house, so she did not know Samuel or I or anything of our story. As she began, I wondered why she was speaking to me, but I listened intently to see what it was she needed.

She held a young baby in her arms and quickly explained that she had to leave the meeting early as she had to go to the library. But before she left, she wanted to tell me something. And then she whispered to me that she had been sitting behind us during the meeting and watching Samuel and I and that in all her life, she had never seen a child look at his mother with such a look of love on his face. She said she had been so touched by it that she just had to tell me before she left. When she finished, I was only able to utter a quiet “Thank You” and then she was gone. And I was instantly in tears.

It was just in my last post and just a few weeks ago that I had sat in Samuel’s room dreading the 3-year anniversary of his accident. And as I cried that night, I had decided that if there was one thing I could wish for, it would be for him to be able to communicate with us. And I had wished that I could know how he feels and if he knows that we love him.

I cannot express to you how deeply I was touched by this woman and what she saw in his precious face. I cannot tell you how wonderful it was to hear from her that she felt that he loves me. But I can tell you that she was prompted by the Spirit to share those feelings with me. How easy would it have been for her to make that observation, keep it to herself and walk away. But there was nothing in this world that I would have wished to hear more than what she told me. I cannot even explain it. It was incredible.

When the meeting ended, I went to the library. As I tried to speak to her, the words just wouldn’t come. I managed to tell her that it was just too long and hard to explain, but that I was so grateful for what she had said. She told me that she is a Special Education teacher and that she deals with children like Samuel all the time. And then she told me again that she had never seen a child with such a look of love on his face for his mother. The tears started again and I could only manage to tell her that I so often wonder what he is thinking. And I will never forget her response as she simply said, “Don’t wonder. He loves you!”

I’ll leave you tonight with my testimony of the power of listening to the promptings of the Spirit. I have 5 boys in my life who I love with all of my heart. Every time I tell 4 of them that I love them, they tell me they love me, too. But one of them can’t tell me. No matter how he tries and no matter how much I wish for it, he can’t tell me. Or at least he couldn’t, until today, when a precious woman and my Father in Heaven teamed up to let me know that he does love me. There is not a more precious gift in the world. And the most incredible thing is that it would not have had the same effect on me had it come from anyone else or at any other time. It needed to come from a complete and total stranger who knew nothing of us. And the fact that it came during that lesson is a testimony to me that she was prompted by the Spirit. My Heavenly Father knew what I needed. And this woman was worthy to help Him in His work.

I will be forever grateful to them both…

And, Samuel, your mommy loves you too!

Love,

Teresa

3-Year Anniversary

July 22, 2008 | Updates

Time is flying and so is the summer.  Just wanted to let everyone know we survived the 3-year anniversary of Samuel’s accident without too much difficulty.  We actually had another little party for him the day before his birthday (Wednesday).  He got to open a few more presents and even had a little cheesecake (until our stupid pesty dog snagged the rest of what was on his plate while I wasn’t looking).  But it was all good.  My mom and step-dad were here and able to celebrate with us.  And my mom even rigged up some nice inventions for his new stroller to ensure every hard spot he can reach is well padded.  Thanks mom!

Samuel’s actual birthday (Thursday) was a pretty hectic day.  I had to spend all day in town in meetings, so I wasn’t too happy about that.  But, we did make sure to take him to the movies that afternoon.  We watched Kung Fu Panda and we were the ONLY ones in the theatre.  That turned out to be really nice since Samuel was noisy through part of the movie.

About Friday night, it hit me that the anniversary day was about here and I spent some time in Samuel’s room while he slept crying and rethinking the past 3 years.  I guess I’ve decided that the hurt never really goes away and that it resides just below the surface in me.  I’ve come to accept that things are the way they are, but that doesn’t mean they can’t get better.  I still so miss my little boy and am so sad at all that we aren’t able to share together.  But I am also so thankful for all that we have.  I wondered that night if I could just choose one thing for him what it would be.  I think I would choose for him to be able to communicate with us.  I so often wonder what he is thinking or how he feels or if he knows how much we love him.  I so wish he could talk to us and let us know what’s inside that cute little head of his.  I hope that he will be able to tell us sometime in the near future.  That would be so incredibly wonderful!

Saturday started off early with Samuel being invited to the birthday party of a little boy in his preschool class.  I was so touched that this little boy would think to invite his friend, Samuel, to his party.  It was a cute little party and the kids were very accepting of Samuel.  Bummer thing was, he slept through most of it - stinker!  But it still meant the world to me that his friend wanted him there.

The rest of the day, we spent at Bear Lake.  It was the first day in a long time that I was able to just spend a lot of time with Tom and all 5 boys relaxing together and just enjoying each other.  Samuel faired well all day and things went pretty smoothly.  I was so tired by the time we got home, but it was a good tired.  And I didn’t even think all day about the fact that it was the 3-year anniversary of his accident.  I’ve decided I’ll try doing that next year - getting all my crying out the night before so I can just enjoy Samuel on that day and not wallow in my own misery :).

So, that’s about it.  Summer school ends in a week and our trip to California for ABR is coming soon after.  Throw in a few family reunions and the summer will be over.  Makes me sad because I love summer.  Makes me happy because they’ll turn the canal water off.  Maybe if I could get them to run the water in the winter, I could have the best of both worlds in the summer!  Doubt they’d go for that though :(.  Ah, well, I really think about it way too much…

Hope you’re all doing well.  Keep those prayers coming!

Love,

The Jewkes