Tender Mercies

A very tired little girl :(

 

This last week was a difficult one. Elise caught a stomach virus which lasted for a couple days. Unfortunately for her, little stomach bugs turn into big problems. We weren't able to get her to eat or drink anything, including her anti-seizure medications.

 

Elise became very sick very quickly. She started on Wednesday night at dinner, not wanting to eat and starting to look a little green. She vomited not long after that. I left her with Heidi while I went to work on Thursday, stocked with Gatorade, Sprite and ice cream. Basically anything that would tempt her to take a drink of something. By the time I got home for lunch, she had had five seizures (two of them were the night before), one of which was terrifying for the kids to watch. Heidi had immediately called Eric, who came home right away.

 

I only had two more patients for the day, so we decided to take her to the hospital when I was done with work and try to get some fluids into her. We took her to the ER at Providence Hospital in Everett. We were there for about five hours, where she had two more violent seizures. One was exactly like the one that Heidi described from earlier that day. Her eyes suddenly shot open, her pupils were huge and black, and she started screaming hysterically while her entire body stiffened. It was the most terrifying thing that I have ever witnessed. I will never forget the look of sheer terror on her little face.

 

We had been sitting in the hospital room already for a long time, with hardly anyone coming in to check on us. Her first seizure had started directly after the doctor left the room. I ran out of the room to notify the nurses in the hall, but by the time they came in she was already self-stabilizing. When she had the second seizure, however, we were certainly not ignored. Three nurses and her doctor came running into the room as soon as they heard her screams. I was trying to console her, but didn't know what to do. I was crying, trying to talk to her and touch her face, hoping that somewhere inside of her she could hear my voice. The team immediately threw an oxygen mask on her face and a dose of Atavan (a strong form of Valium) was ordered for her.

 

After three needle sticks, the nurses were able to get an IV into Elise's arm. The Atavan was pumped in and she almost immediately quieted down.

 

The ER doctor who was helping Elise out decided that she was beyond the scope of their care. She needed a pediatric neurologist, who could get her seizures stabilized. They decided that we needed to transfer her down to Children's Hospital in Seattle.

 

Elise and I rode in the noisy, bumpy ambulance down to Children's at around midnight. She had another minor seizure in the ambulance, but it was very small. The EMT who rode in the back with us gave her a cute little teddy bear, with a few injuries of his own. He had a bandaid on his head, a cast on his leg, and carried a crutch.

 

We arrived at Children's and went through all the test results and interviews with multiple doctors. Elise had another seizure while everyone else was out of the room, but it was pretty mild. I mentioned it to them when they returned and they were stunned that I hadn't notified them. I hadn't gotten much help before so it didn't occur to me to call for anyone again, especially for a small one. But they were flabbergasted. It was pretty funny actually.

 

Elise was put onto a loading dose of Keppra, one of her main anti-seizure medications. After that we were finally admitted. We didn't get to our room until 4:00 am. By then I was so tired I thought that I would fall asleep on my feet. After getting her situated in the room I was finally able to get a few hours sleep until morning.

 

The next day Elise did well. She was very sleepy and nonresponsive, but that was understandable. The important thing was that she was no longer having seizures. Now the waiting game was just to see when she could manage drinking on her own, in particular to take her medications.

 

Eric came to Children's at about noon and I was able to step out of the room for a few minutes to get us some lunch. We coaxed Elise all afternoon until finally she was ready to really wake up. At last she was drinking enough and alert enough that the doctors felt comfortable to release her. We got home around 6:00 that night, just in time to make some dinner for the kids. 

 

On our way home!

As I have reflected back on this experience, I have been amazed to notice all the tender mercies that we received during Elise's illness.

 

Although it was scary to watch my child go through so much trauma over something as small as a stomach virus, I have felt so incredibly blessed. She is healthy and doing well. She was a bit wobbly today still, but by this evening she was laughing and babbling just like she always does. We have our little Elisey back, with no apparent damage.

 

The amazing thing was, however, that I felt so much peace during the entire event. I knew without a doubt that she was going to recover, that she was in excellent care with all the doctors and nurses who handled her case, and that we were going to pull through this as a family.

 

Several times the nurses and doctors mentioned how surprised they were about our calm demeanor. They said that most parents would be panicking at what they saw and what was happening with their child. We laughed it off, saying that it wasn't our first time dealing with these issues. But the more I have thought about it, the more I realize what a beautiful gift we were given of peace and comfort. It was a blessing straight from our Father in Heaven and I am so thankful for it.

 

I was also never concerned about the other kids at home. Heidi did a wonderful job holding down the fort, feeding the kids, and managing all that needed done in our absence. What a blessing she is to our family as well.

 

While we watched over our sleepy girl in the hospital, on Friday we had a visit from a woman in one of the wards located around Children's Hospital. She came asking if we needed assistance with anything, if we needed Priesthood blessings, and if we wanted our names submitted on the temple rolls for strengthening prayers and blessings. I was so touched by her visit, a complete stranger, who came bringing the love of the Savior into our room. She seemed to look right into me and see exactly what I needed to hear at that time. Among other things, she said that I needed a chocolate milk shake and gave Eric the charge to find me one. I felt incredibly blessed to be so looked after.

 

And then there were all the prayers from friends and family. It only took a few little posts on Facebook for me to have an entire support group rallying around our family. I can't even express how very much I felt those prayers. The power of prayer and faith is real. It is so real that I feel that I could tangibly reach out and touch it. I am still basking in the warm afterglow left over from it's encompassing glory. God's love for us is real. His love for my family is real. And His love for my little girl is as wide as the universe.

 

I am so grateful for tender mercies, and their affirming and absolute confirmation of my Heavenly Father's tender love for each of us. 

Lessons from Elise

I wrote an essay entitled "Lessons from Elise" which is featured on our writing group's website today. I went into more detail of what life is like living with a child with disabilities, as well as my journey to being at peace with it.  Check the link to read the full essay!

Seeing the Rainbow

This is a picture my dad took when he was here visiting for our spring break.

One of my patients at work had a rough time last year with difficult illnesses and hospital stays.  For a while her family did not think that she was going to pull through it.  I was devastated when I heard the news.  I feel a special connection with her because she reminds me so much of Elise.

When I see her mom bring her in to the office it makes me think about how that will be me and Elise in fifteen years.  She calls her "her buddy," and they go everywhere together.  She gives everyone she sees hugs, while laughing and smiling.  It broke my heart to think of never seeing her again.

My special little friend came into the office again today to get her teeth cleaned.  After multiple hospital stays and surgeries, she is finally back to her happy bubbly self.  I was on the verge of tears the entire visit.  I had never been so happy to give that girl hug after hug after hug.

Sometimes I think about the future as Elise's mother and caregiver.  Sometimes it is scary.  My patient's mother has been through so many trials with her daughter, keeping her healthy and getting the therapy and care which her condition demands.  And yet, through all the struggles, she has only ever been grateful to have the privilege of raising such a sweet spirit.

It reminded me of something President Dieter F. Uchtdorf said in his talk during our recent General Conference.  "How much of life do we miss by waiting to see the rainbow before thanking God that there is rain."

Some may see having a child with a disability as a trial.  I used to think so as well.  But then I was plunged head first into that world myself.  I am constantly bombarded with the day to day struggle of feeding, dressing and caring for a child with special needs, one who is completely reliant on me for her most basic care.  I live in continual fear of the next episode of seizures, with the overhanging possibility that the next time we won't be so lucky, and she could have serious after effects.

But I have also been enveloped in the warm embrace of Elise's monster hugs and caught her blown kisses from the air.  I have been surrounded by the music of her infectious laugh and marveled at every miraculous milestone.

I have never been so grateful for a trial in my life.

Elise has always helped me see the rainbow, even before it is ready to be revealed, all because I am not afraid to get a little wet.

Happy Birthday Elise!

 

Today marks 10 years since my sweet little Elise joined our family.

 



 

10 years of joy

10 years of heartache

10 years of adventure

10 years of fun

10 years of prayers

10 years of answers

10 years of laughter

10 years of work

10 years of miracles

 



 

10 years of love

 

Happy Birthday Sweet Elise!!

He Knows Me By Name

On August 6th was mine and Eric's 19th wedding anniversary.

It was a really special day for us. We happened to be in Boise visiting for a family reunion, so we thought it would be meaningful to attend a session in the same temple that we were married in 19 years previously.  My parents and brother Michael attended with us and it was an experience that I will never forget.

The Boise Temple was recently completely remodeled. Everything on the inside was gutted out and redesigned, and the outside was resurfaced with a beautiful white granite. This was our first time through the temple since all the changes were made. 

As I entered this beautiful building, both completely new yet forever the same, I was overcome with memories from my first experience in that sacred House of the Lord. Not only was I sealed to Eric on that special day 19 years previously, but I also made other sacred covenants with the Lord for the first time. To add to this remembrance of first experiences, we were also able to see for the first time a beautiful new production made for part of the temple ceremony. It was like I was reliving that new day again so many years ago, and I was once again full of awe and wonder at how blessed I am to live in this world at this time.

 

There were several other beautiful moments which occurred that morning, so sacred and special that I find them difficult to talk about. As I was sitting in the Celestial Room, the holiest of places in the temple, surrounded by my family and with Eric by my side, I contemplated what I had just experienced and why it meant so much to me.

I was suddenly overwhelmed by such a rush of warmth and love so powerful it left me breathless. In that moment I felt so incredibly and personally loved by my Father in Heaven. He knew my needs, my fears, my strengths, my weaknesses, and He LOVED ME! I knew that He knew me by name.

Why did this mean so much to me at this particular time?

There is nothing more personal or sacred that identifies you individually and apart from anyone else, than your name.

I have been struggling with a lot of personal issues for many months now. Despite my best efforts, I have been continually berating myself for my inability to overcome personal weaknesses, and it has been a struggle to see the light at the end of the tunnel. Sometimes I am so overwhelmed with the idea of who I want to be, that it seems impossible for me to be able to overcome my personal weaknesses and be that woman in my mind. How could I truly be loved as a Daughter of God if I wasn't perfect?

In my mind, I already knew that I was loved, even despite my imperfections. But at that moment, I really needed to KNOW, and in His perfect love and mercy, my Father in Heaven knew what I needed.

He knows me by name.

Tonight I had another difficult moment, when fear and desperation gripped me as I watched Elise endure another terrifying seizure. I held her, trying to calm her and comfort her as she cried, while at the same time I was screaming in my head, "WHY? WHY? WHY must we go through this? How can I endure seeing my child suffer like this?"

Then once again I was comforted with the same reassurance that not only am I loved, and my trials and fears are understood, but that Elise is so very loved as well. All at once, I flashed back to that special day in the temple and what I experienced there. Almost from the moment that the remembrance flooded my heart, Elise seemed to feel it as well. Her body started to relax and her rattling breaths began to slow and steady. I was once again overcome with a feeling of peace and love, knowing that our needs were understood and met.

Elise looked up at me and gave a small, tired smile, then rolled onto her side and snuggled into her sleeping position, her eyes quickly drifting shut.

I am so grateful for a Father in Heaven who answers prayers, especially the ones that we don't even know we are sending up to Him. I am so grateful for His guidance and the constant assurances I receive to confirm that I am a beloved Daughter of God, despite my weaknesses and faults.

He knows me by name.

Elise Turns Nine!

We celebrated Elise's ninth birthday this week.  It was on April 15th, and true to form, Eric was submitting our taxes that morning!



 

Elise loved the princess cake!  Of course, so did Erica!!

 

 

 

 She even blew out her own candles this year!  I'm not sure how much spit did the extinguishing, but she got the job done!

 Elise loved her new little monkey.

She had a multi-colored cake, colored with neon dyes.  The cake was bright pink and green (which looks like a citron-color), and the frosting was a fun purple color (the camera does not capture the color well at all!) and was flavored with coconut extract.

 

HaPpY BiRthDaY ELiSE!!!

 

We are so lucky to have you in our family!

Funny Me

Every year, Everett School District sponsors an art competition for students to submit their original pieces of art and presentation called the Reflections Celebration.  First place winners in each division then move on to state level competition.  For the first time, this year they have a Special Artist Division for those with qualifying disabilities.  The students must create their own artwork, but can have non-artistic accomodation and assistance from an adult. 

 

This year's theme is "Magic of the Moment."

 

Elise's teacher really wanted to submit something from Elise.  She works daily at school on an iPad, and loves to look at pictures of herself and her friends on it.  One day her teacher set the iPad on video record and let Elise do her thing.  The result is her submission titled, "Funny Me."

 

On Wednesday night, the School District had an open house with all the artwork and submissions on display, along with their awards.  Elise's video took first place in her division, which means it will be moving on to the state competition!

 

It was a really special night.  As I was wandering around looking at all the student submissions, I had several people come introduce themselves to me, wanting to get to meet Elise's mom.  Two women from the PTSA committee sought me out specifically so they could meet me and tell me how much they adore Elise.  They both started to tear up as they exclaimed how excited they were to see her video, and also tell me how much of an impact she makes on all the kids around her.

 

They didn't have to tell me how special she is, though.  I already knew that, but it is so touching to see what a positive role she plays.  She is here on earth, and in our home, for a very special purpose.

 

When Eric gave Elise her first Priesthood blessing at church, it was before we even realized that she was going to be different and have special needs.  He was inspired by our Heavenly Father to tell her that she is a very special spirit, reserved to come to earth at this time, and that others would feel the Savior's love through her.

 

Everyday, Elise brings the Spirit into our home, and I see how others immediately feel something special when they are near her.  They are filled with love.  I know this is a gift from our Father in Heaven to each of us, and is Elise's special purpose here on the earth.  Even if they do not know how to expain what they are feeling, they are experiencing first-hand the Savior's love for each of us, as shown through the smile of one of His most precious children.

Elise in White

I got Elise a beautiful white dress for her eighth birthday, and in a brief moment of cooperation from the weather, I have finally gotten some nice pictures of her in it!



She is an angel on earth. What a blessing to our family!



Her smile and laugh are infectious. How can you help but adore her?



We love you, Elise!!!

Eight is Great

Today my angel girl Elise turned eight years old!

We celebrated with a yummy coconut cake.

The figurine on top was so sweet and reminded me of our little sweetheart!

She loved it when we lit the candle!

Erica was a big "helper" in opening presents! She was just as excited about all of Elise's presents as Elise was!

Happy Birthday, sweet girl!

We love you so much and are so blessed to have you in our family!!!

Chaos is....

four kids, going to four different schools!

Yes, we have approached the inevitable, and it only gets worse from here!  Not only are all four of my kids in school now, they all happen to go to four different schools!

Wednesday was the first day back for the three older kids.  They were each a mixture of excitement and dread.  I, on the other hand, was ecstatic to get back into a regular routine!  Of course, first we had to survive that first dreadful week where buses are eternally late, nobody knows were to go, and I can't find a single gluestick in this entire stinkin' town!

Heidi returned to Cascade High School, as a Sophomore this year.  My little girl is all grown-up, dreaming of Driver's Training and college applications.....She starts every morning bright and early, heading off to her early-morning Seminary class at 6:00 am, before riding a bus to school.  She was the most excited of all the kids to go back to school.  I'm sure she missed hanging out with her friends, since she was stuck at home while I was at work for the majority of the summer.

Ethan returned to Jefferson Elementary, now at the top of the school as a big 5th grader.  He is looking forward to being able to go to 5th grade camp later this month.  It's his last year in elementary school, and I can hardly believe it.

Elise started up again at Forest View Elementary, in the Life Skills class, as a 2nd grader.  She has the same great teachers as last year, which I am very happy about.  Her teachers are wonderful with her, and she has some fantastic therapists who work with her as well.  Everyone there loves her, and she comes home everyday with a new hairstyle that someone has taken the time to do.  Some of them are silly, some are cute.  I am just amazed that she lets them touch her hair, since I can hardly do anything on her without a serious tantrum ensuing.

Erica started preschool at Miss Maryanne's Einstein Academy on Thursday.  She was sooooo excited to go to school like the big kids!!  When I took her picture in front of the door, she insisted on turning so I could see her backpack, which she is extremely proud of.  When I asked her what she did on the first day, she replied,

"Ummmm, painted!" 

"What did you paint?"

"Ummmm, pink!"

"What else did you do?"

"Ummmm, I eated!"

"What did you eat?"

"FISHIES!!"

What more could a three-year-old ask for, than to paint and eat goldfish crackers?  Miss Maryanne knows the way to a toddler's heart!


This is going to be a great year.....CHAOTIC, for sure.....but GREAT!

Birthday Girl Elise

 We celebrated Elise's 7th birthday all weekend long.  Here, the girls are playing at the park.

Since Elise's birthday was so close to Easter this year, she got an Easter-themed cake.  It was a funfetti cake, surrounded in marshmallow Peeps, adorned with Cadbury Eggs, and topped with the Easter Bunny himself! You can't get much more Easter-ish than that!

Elise's favorite present was this DORA the EXPLORER microphone, which played Dora songs.  She is having to fight off her little sister for rights to this one......Good thing Erica's birthday is coming up soon too!

Losing Teeth

Elise "lost" her front tooth this weekend, and by lost I mean that I pulled it. It was hanging low, turning purple, and she was refusing to eat. So out comes my secret stash of topical anesthetic from dental hygiene school and a few Q-tips!

*******

Ethan was watching as I was performing the delicate procedure. Then as I was doing the final twist (you must do this part quick, with no hesitation!), he started turning green. I then asked him if he wanted to be next, since he has a leftover tooth just begging to be released and it is bothering him. He quickly darted out of reach and clamped his mouth shut. There would be only one tooth pulled today!!

*******

Of course, then Heidi and Ethan bemoaned the fact that I "always" pull their teeth and I am so mean. They were also adamant about how the "topical doesn't work, anyway!" Sorry, but I just can't stand seeing these dead little things flapping in the breeze! They hang on to them until they could be sneezed out!

Besides, isn't her grin super cute now?!


I wonder what she will spend her tooth fairy dollar on....

Check out my big girl....

Elise is walking!!!!

Lost

Elise has been working on her first loose tooth for a while now. The permanent tooth came in behind the baby tooth, so it took a while for the baby tooth to get loose. Once it actually started getting loose enough to wiggle, she wouldn't let me near it. She has also been avoiding eating many items, probably from discomfort.


I have been wanting to yank that tooth out myself for the last several weeks. I can't help it! Maybe it's the dental background, or maybe it's just that I can't stand having something dead, gross, and useless just hanging there, taunting me.


My kids hate this impulse of mine. I have managed to bully my way into pulling several of their baby teeth, and they still cry about it (waa waa). I do try to make it more comfortable. I apply a generous amount of topical anesthetic, courtesy of my student stash from hygiene school. Heidi has informed me several times that "it doesn't work!" I'm not sure why she thought it should make it completely numb, which of course it doesn't!!! Silly girl.


Anyway, Elise has proven to be very good at fighting me off, so I have had to watch her tooth flapping in the wind.


At dinner tonight someone noticed her tooth was gone. Who knows when it came out. It could have been anytime today, or it could have been at dinner! All we know is that it is truly "lost," as in MIA.


I sure hope the tooth fairy won't mind there is no tooth on the bedside table tonight. I know she likes to add them to her collection, but hopefully she'll make an exception in this case. She is a good friend of mine, after all.

Birthday Girl

We had a fun time celebrating Elise's birthday yesterday....She got excited seeing all the wrapped packages. She was a little cautious about tearing the paper open, however. Perhaps I've told her "NO" a few too many times for her to think she could do it!
She loved discovering the bright and noisy toys inside. She got a great haul of toys, books, clothes, and a swing seat that we plan on hanging outside.

Her cake was a simple one this year. It was a pineapple upside-down cake (except that it was right-side up!) covered in whipped topping. I was immediately reminded of Elise when I saw this figurine because of a new "trick" she's recently discovered....

.....We think it means she wants a hug when she does this. She throws her arms out in a very dramatic manner-- it's pretty cute! I was also inspired from the figurine because she is standing....YAY!

I can't believe it has been six years....

My little girl is growing up!