Lizzie

My dear friends, Ben and Carol Huff, need your help. Their daughter, Lizzie, is only a bit older than my Tommy who is 6, and already has many health issues. She had a brain tumor and after having emergency surgery to remove it, she suffered a stroke. She has so many side effects from both of these issues and she both breaks my heart and inspires me. They are an exceptional family.
This evening I received news that little Lizzie has suffered another stroke. Ben and Carol are in Europe on vacation and are scrambling to get home to their little girl.
I have spoken with Carol's mom and she told me that although there are some encouraging signs, Lizzie is far from out of the woods and the family is scared.
Robert and I know that at this time there is little we can do for this family. The medical team will do all they possibly can for her but right now, she needs much more than that. She needs Heavenly Father.
So I am asking for all who read this to remember Lizzie, her family, and her Doctors in your prayers. Even a small prayer in your heart would help.
To read more about this wonderful family, click on their link on the right side of my blog. Careful, though, you just might fall in love with this little girl!

Birthday



Happy Birthday to me! And lovely candle.


For the next 20 or so minutes it's still my birthday, I am so thankful to have been granted yet another year with all those I love. My life just keeps getting better and better every year! And as my PT, Tim, says, "The more birthdays you have, THE MORE BIRTHDAYS YOU HAVE!"

Early this morning I woke up and the Beatles song, "Today Is Your Birthday" popped into my head.  I started giggling to myself as I remembered how my dad would sing it to me every year. Not real pretty. He and I now have about the same singing ability. Thanks for starting my day off right, dad!

The rest of my day was filled with visits, calls, and texts from friends and family and Karen even had them sing to me at Olive Garden. And tonight Robert had Josh and Shanae and Papa and Nenni (his parents) come over to have cake.

But the best thing about today was my little family.  Robert was extra sweet all day and smiled and wished me a happy birthday over and over. I love that he gets as excited as I do! The kids gave me lots of extra hugs and kisses and I even got a stuffed hamster from Tommy and a horse with a rainbow mane from Ana Jain. It didn't even matter to me that they were gifts I had already given to them. And of course part of their gifts was playing with the toys with them.

I am so blessed.

Sun Valley

We just got back from Sun Valley/Ketchum/Redfish Lake, Idaho. The whole family (excepting those who live out of state) goes every year. We got figuring that we have gone for 33ish years now. We have our favorite hang outs, traditions, and are even known to some of the locals. I grew up going and now my kids look forward to it every year.

Every year we do pretty much the same things, including such high adventure activities as swimming,  napping, eating, shopping, tennis, eating, hiking, and meeting each evening at the  Chocolate Foundry and duck pond. It's very relaxing and so much fun!



Tommy and his cousin, Logan




Mr.Aleq




Ally, Olivia, Casidy and Ana Jain




Shanae and I got lovely new glasses




My fish, Tommy




All 3 of my critters



Such a happy and proud driver



Ahhh, so sweet



Our wild family

Jain loves baby Aubrie!!

My fam. Notice Jains usual reaction to the camera...

 

One night while taking pictures at the duck pond, I had a moment. I know most people don't love every picture they are in but with me it's more than looking fat or something in my teeth. I have to concentrate on where I place my head since I can't feel center very well. My smile is never what it should be. I have to wear sunglasses nearly all the time to protect my right eye from the elements. And all the muscles waking up or not yet working have caused weird lines and holes in my face. I was never any super model but at least I didn't cause stares or scare children before. I have to keep reminding myself that my face seems a fair trade for all the miracles in my life. I just keep forgetting.

And Jain told us she loves visiting Ketchup and Sun Valley.

Super

Last night I went to Walmart again because Robert requested more stuff for our vacation. Okay, I was so concerned with feeding the kids that I forgot things besides goldfish and gogurts. On the way out I heard a girl say, "Is that Jodi?" I turned around and had no idea who she was. One of those awkward hi...you moments.  She quickly explained that she was Shanae's friend and had met my boy, Tommy, on numerous occasions when he was over at Shanae's house. "I saw your daughter and thought, that's Tommy's face on that girl, so I knew it had to be you." I think this means we have never met before so I don't feel so bad. She then helped me put my groceries in my car and even took my cart for me.  It may have been easy and small to her but to me it was huge. As I have said before, taking groceries out of the cart and lifting them into the car really taxes me. And putting the cart away means I have to walk back without it's help and it's always a little scary in that parking lot.

It put me in a good mood all night and once again, showed how kind people are. Thank you, Andrea!

And while we are nowhere near the subject, let me tell you how cool I am.  A while ago I was cooking something on the stove and using my left hand to stir. My hand started to feel strange, not pain, just strange. So I wondered if maybe the spoon were too hot and grabbed it with my right hand. HOT!! I only touched it for a second before dropping it, but it was long enough to burn my palm. Nothing serious but still. Not one mark on my left hand.

Then last night at dinner Jain asked how I got my owie. I was confused until I looked on the back of my left arm and saw a pretty good sized scrape. Again nothing serious but enough to have to wash off the dried blood. I have no clue how or where it came from.

When I had the nerve transplant, he took the nerves from the back of each leg so now I am totally numb back there. I do still get phantom pains and itches.  He took the nerves from my legs and hooked them to one side of my face and strung them all the way across to the other. As they started to grow, if I touched the left side of my face, I could feel it on the right side.

You can say all you want about nerve damage or regeneration but my kids and I know the truth. I'm a super hero!

Random

Because this is also my on-going letter to my mom, who is on her mission, here are a few random updates.

1.  Yesterday, Shanae (my sis -in-law) and I were either brave enough or stupid enough to take all 6 kids to the splash pad at HAFB. They had a blast and I loved chatting with Shanae and holding and playing with baby Aubrie. Again, Aleq held my hand the whole way over the grass and back to the car.

The sweetest thing happened when I was about to get in the car. Shanae's 7 rear old boy, Carson, ran up and said, "I will do it, Jodi." He opened my door, waited for me to get in, and then closed it behind me. I just melted.

2.  It has been a bit since my trip to Texas but I forgot something.  When we flew back out of Austin, I got priority boarding. Yet another perk of having a stroke.  Don't you wish you were so lucky? Anyway, as I was walking down the aisle, the flight attendant recognized me from a previous flight. How many passengers had she seen in that time? My looks are very distinctive and so I am very memorable. I'm not quite sure how to feel about this...

3.  Tonight I went to Walmart and  just as I was parking a whole group of girls (was my car invisible??) walked right in front and to the side of my car. My parking job ended up being so skeewumpus that I just had to laugh.

How perfect is this parking job for this parking space?

What keeps me going?

I am often asked, "What keeps you going?"  I'm not sure quite how to answer this question. There isn't just one thing but a combination of quite a few.

First is I HAD NO CHOICE. There were times, especially at first, when I felt like I was going to be a huge burden to everybody around me and it would be so much easier for all involved if I were just gone. But, as I have said before, I didn't even have control enough to die. I was fed through a tube that was controlled by others, I had oxygen being forced into my lungs, and every heartbeat or movement was monitored.

So maybe I couldn't die but I could be the least burden possible. I figured the best thing was for me to live in a place where they could meet my medical needs and I could just languish there. Robert could divorce me and marry a fun girl who would make him happy and love my kidlets. It might be sad but easier. My siblings and mom would be sad but get over it quickly.

So I called Robert and told him to just leave me. Then I hung up the phone and refused to accept any calls and even refused to talk when he called my moms phone. My mom was thoroughly disgusted with me all day but I figured on some resistance.

My room faced the elevators and right after 5 that evening, a huge bouquet of flowers with legs got off the elevator. Robert had left work early and brought me flowers. With tears in his eyes he said the kindest, most loving words ever.

"I love you. I can handle whatever I need to but DON'T YOU EVER LEAVE ME!"

That was exactly what I wanted and needed. After that I felt that since Robert was with me, I could do anything. And I wanted to be the best wife and mother I possibly could so he would never be burdened.

I may have tried before but now I had even more motivation. I had no intention of settling. My determination was set.  However, I continued to be scared, intimidated, frustrated, discouraged, and just plain tired.

But it seemed that with every obstacle Heavenly Father was right with me, giving me strength that I had never had before. He made sure I had the best therapists, Doctors, nurses, friends and family support. It was as if He said, "You may have had this stroke, but I am going to take care of you every step of the way. "

Fighting and working hard are what God wants me to do. After all that I have received I would be very ungrateful  if I didn't give my all. He has chosen to work through me to show some of His power. Lucky me, right? But seriously, lucky me.

Swimming Lessons

Tommy and Jain love taking swimming lessons.  Usually Tommy will only wear pajamas and MAKING  Jain's hair (her word) is not her favorite thing. But for lessons they are fast at putting on their suits and Jain literally runs to the mirror so I can pull her hair back.

Once we get there, I park up front (perk of being handicapped) and they race up to the doors where they know to wait for slow walking mom. They fight over who gets to push the magic button to make the doors open by themselves and then they race again to their class, only pausing long enough to kick off their flip flops and drop their towels on a chair.

Luckily, Aleq chose soccer over swimming (only one activity at a time!!) so he stays with me.  It is really pretty dangerous for me to be around water, the ground is often wet and slippery, and there are lots of kids walking around me so walking there is not such a good thing. But Aleq stays right by me, holding my hand and saying excuse me to those who don't hear my quiet voice. He even offered to walk over to take pictures of the kids in their classes.

When class is over, we wait for the crowd to clear out so I won 't have so many obstacles. Again, Aleq is invaluable. He helps keep Tommy and Jain close and then helps me walk back out.

What other 9 year old takes on this kind of responsibility?  I can and have done it alone but I feel so much safer with him there. I am very careful to rarely ask for his help and often act tougher than I feel so he will go play and just be a kid. But he has seen how his dad treats me and just seems to believe that when Robert is not around, it's his role. He has a huge heart.

I wonder how long his helping me will last. Will he be less inclined to do so as he gets to be a teenager? Will there come a time when all my kids will be embarrassed by me? I hope not.

We have tried to make the effects of the stroke seem "every day" and even laugh at some things like my dancing or singing. But they see my tears of frustration and humiliation when I lose my balance and fall, notice that I can't write to fill out papers, or are curious when they see me pulling my face into odd expressions as I exercise my weak muscles. They realize that I am different and that other moms aren't strokey.

But we have all gained so much from all of this. When Aleq told me that I had taught him to never give up, my heart soared. I hope they see that Mommy and Daddy never gave up and that Heavenly Father has been watching over our little family and performing miracles in our behalf. I hope they can see that although I am different, we are so blessed to be together here. I hope they feel the love for them that kept me and continues to keep me fighting.

And I hope they see how great handicapped parking is!


Ana Jain in the water and Aleq's finger over the lens. :-)




That's Tommy smiling and a great shot of Aleq's finger!



Jain's reaction to the camera.

 

My sweet helper.




Aleq

I have resisted writing about this just out of the instinct to protect my boy, but there shouldn't really be a need to protect him, it's an illness like any other. Also, because this is my journal, I want to write down some of my feelings.

From the day he was born Aleq has been high maintenance. He cried A LOT and rarely slept more than an hour or two at a time. He was my first and I had no one with whom to compare him. At the time I was working for the National Center On Shaken Baby Syndrome so I was teaching others about normal infant crying and Aleq seemed to go right along with what I was teaching. But he didn't grow out of it. Unless I was right with him, giving my full attention, he would cry. During showers or if I even happened to leave his view, he would just scream and cry. But he was my boy with whom I was in love, so it was pretty rare that he didn't have my full attention.  And a more sweet and tender hearted boy was never born!

As he grew he was always "switched on high" and he just wore me out!  But I was soooo happy with him! Most of the time his energy or moods were absolutely darling and there was a lot of laughter in our home. Often, though, I felt that I just didn't have the energy to keep up with him.  I felt a little inadequate that I only had one child yet I couldn't keep up with him, my house (trying to sell it so it had to be clean), or my marriage the way I thought I should.

At times I would get exasperated and out of patience with him.  If I were thinking clearly I would take a mommy time out to catch my breath. Admittedly though, I didn't think clearly more often than not.  At these times I would just break down crying or even yell myself, which would often startle us both. I did have a great support system and Robert and I were never without help.  My sister, Wendy, who works with behavioral problems for Ogden City Schools, was a wonderful resource and had to endure numerous questions and many tearful phone calls.

When Tommy came along I remember thinking, "this is so easy!" But I just chalked it up to Aleq getting my personality and Tommy getting Robert's. This is true but there is more than just personalities at work here.

When he was in 1st grade we took him to our doctor to see about medication. We tried a few and they would work for a few weeks and then his behavior would be even worse than before. Finally towards the end of his 2nd grade year, we found a wonderful psychiatrist. At first she diagnosed him with ADHD. Again, the meds didn't really work. Then she thought Bipolar. However his symptoms didn't really match up well and he didn't seem to have the depressive periods.

Now he has an official diagnosis of "unknown mood disorder." Helpful, huh? We have found one medication that seems to be taking the edge off but nothing that is a wonder drug. His grades continue to be way above average but his over the top behavior makes being his teacher or parent a really tough job. And he is old enough and smart enough to get it and now tries to miss school or activities that he knows won't be fun, like school programs, field trips, some scouting activities etc.

That boy breaks my heart. I love him with my whole soul and I see what a soft hearted, kind, funny, and plain good boy he is. I want everyone to see the beauty I see in him.

I have said it before, do whatever to me. But leave my kids alone! Kids are too little, they should be exempt from all hardships. But they have the strong spirits. They are resilient and powerful. I have to believe that. Often, as those who love them, the trials may be for us to learn from.

I realize that our troubles are just a drop in the bucket compared to others. But he isn't others boy, he is mine and this is hard.

Happy Birthday, USA!

I feel very blessed to live in this country. It's what I know and what I love. I know people have and are dying to preserve our freedoms. I feel especially blessed that I live in the USA where everyone can worship how, when, or what they may.  I love this land!!

Yesterday was Independence day and I revel in this day.  To celebrate I had the most of my family over for dinner, swimming/sliding, and just hanging out. Then we all went to my neighbors, the Stallings, and pooled our firework resources. It was a blast! Here are a lot of pics taken by my niece, Kaitlyn, and 1 or 2 by me.

This soccer game is for blood!

Cute sis-in-law, Shanae, and me giving a super hot look.

Wendy, Kaitlyn, and baby Aubrie. I think Aubrie is looking at mama, Shanae.

 

Our smokin' hot chef, Robert

 

Jain sure loves her cousin, Olivia!



Slide, Jain, slide!



Our really strong boys.

 

The shirts and necklaces they (sort of) made themselves.



Some of the fun fireworks!




My sweet Ana Jain



They fell asleep in the short time it took to tuck in Jain.



It was a full day of fun!



Groundhog Day

My daily schedule in the hospital was a bit like the movie "Groundhog Day". The same things, day in and day out. It was probably boring to others, but  never to me. I dreaded each new day and I was working too hard and was too exhausted every night to be bored.

Every day would start around 5:30 with a much hated blood draw. I had to have one every morning so they could check how thin my blood was. On one occasion, it was so thin that I was not allowed out of bed because if I even got the slightest bump, I would start bleeding internally and it may have been daedly. Honestly, I was concerned but only too happy to have a whole day of peace. Usually my blood was okay and I was just asked to be careful in therapy. By the time the lab tech left, I was wide awake but I tried to get as much rest in as I could before the therapy began.

Around 7, I would get my therapy schedule and then I would get my HUGE list of meds (through my G Tube) and get my finger pricked to check my blood sugar levels. Not having the ability to swallow, I was fed a Nestle vanilla high caloric and high sugar mix through my G Tube. Not sure why it was flavored but to this day I hate the smell of vanilla.

At 8 my mom would arrive. My room faced the elevators and I would watch both them and the clock for her. She was my security blanket, my advocate, and just my mommy,

Around 7:40 I started therapy. I would do Physical, Occupational, Speech, and Recreation therapies all morning. Any breaks would be spent in the therapy gym on a bench, with my angel mom massaging my legs.

There was an hour break for lunch during which my mom ate and I rested up for the afternoon.

In the afternoon it was therapy, therapy, and more therapy. And for anyone who thinks therapy is nice and gentle, let me tell you, it's not! It was a full on workout both physically and emotionally.

By 4:30, I was done with therapy. My mom and I would go back to my room and she would read to me.

A little after 5, my mom would go back to her hotel (she moved in to the hospital guest house) and Robert would come. He and I would talk, take "walks" or he would play on his phone if I were too worn out to even do anything. We needed the closeness. I needed it. He would leave around 7 and then race home to tuck our boys in bed.

From 7-9, I watched Nick at Night. It was mind numbing but I was too tired to watch anything that required me to actually pay attention. At 9, I had my nightly meds, which took anywhere between 1/2 hour to 45 minutes, depending on the nurse. Some nights I would fall asleep with people still in my room and the T.V. on.

Usually around midnight I would have to go to the bathroom so I would have to ask for help. At first this meant I was catheterised, which involved lights and at least two people. When my bladder started working again I had two people to help get my trach tube, my feeding tube, and often my I.V. tube arranged or unhooked, then transfer me to the bedside commode and back again. Not a 1 or 2 minute job. Then, I would be fully awake and it usually took about an hour before I was back to sleep.

Wash, rinse, repeat.