Somewhere Over the Rainbow

It has been incredibly difficult to come back to the blog. Sometimes, it's easier to avoid feeling this pain, but I want to make sure I remember everything with Moriah, even after her passing. 

This story has to do with rainbows. 

The day that Moriah passed away, Monday, December 1st 2014, it rained for the whole week. It was as if the world was crying with us, mourning her death. 

On Saturday, the day of her Memorial Service, the skies finally cleared, and there was the biggest, most beautiful double rainbow there ever was. 

I had people calling me, texting, sending me pictures of this rainbow. They all knew. 

It was for Moriah. 

I will never forget it. I felt like it was God bringing comfort to my aching heart. 

A month or so later, Justin and I finally went to pick up Moriah's ashes. It was obviously a very emotional day for us, and we were both crying on the drive home...missing her so much.

It wasn't raining, but we looked to our right, and we saw another rainbow. 

Justin and I both knew...

We never felt connected to rainbows before, but these happened at the most perfect moments, when our hearts needed the most comfort. 

Now, we see a rainbow, and we see our sweet Moriah in it, shining bright from Heaven. 

We know she is in the most perfect place...with God. 

Until we see her again, I will hold onto these rainbows, as a reminder of her, of His hope, and of His perfect plan. 

Happy 7th Birthday, Moriah

My dearest Moriah,

Happy 7th Birthday, my angel. I know you are having the time of your life, celebrating in Heaven. I can imagine you eating all the chocolate cake to your heart's content. 

Your 1st grade class will be wearing pink today, and we are going to stop by with a cake to say Hi. Then we are going to Mimi's house for dinner, and will have a chocolate cake for you there. 

I just have to say how BLESSED I am to have had you for 7 years. 

I was recently reminded by Pastor Gene that 7 is the number for perfection. How very true. 

Not a day goes by where I don't think of you. 

I hope you are wearing the most neon pink feather boa, singing loudly, dancing to Michael Jackson, and even riding lots of roller coaster rides...the really big ones. 

And, because looking at your pictures is one of the things that comforts me the most with you being gone, I leave you with several (thank you for always putting up with me sticking the camera in your face). 

I love you with all my heart, Ya Ya.

Love, 

Mommy

Nelson Family Christmas Letter 2014

(I am thankful I completed these cards before Moriah was admitted to the hospital)  

December 8, 2014

Dear Friends and Family,

It is with sad and heavy hearts that we write our Christmas letter this year. Our sweet, beautiful Moriah went to be with the Lord on December 1, 2014. Moriah was admitted to Lucile Packard Children’s Hospital on November 15, 2014 for an infection in her bloodstream, and it became too much for her little body to fight, despite all the efforts made by her Nurses and Doctors. We are missing her smiles, laughter, (and pinches) very much, but we know she is now running free in Heaven.

This past year, we shared some beautiful experiences with Moriah for which we are forever grateful. We went to her Kindergarten Luau graduation, we dedicated all 3 children at our church, we completed a Summer Bucket List that included going to Gilroy Gardens, we went strawberry picking, apple picking, she hung out in our backyard playing in the swing set, and Nurse Elaine even put her in the baby pool with her siblings. She started 1st grade, and she participated in the school Halloween Parade with all the children yelling “Moriah! Moriah” as she wheeled past them in her Pirate Ship wheelchair, Nurse Sharon as her First Mate. She learned to eat solid foods...her favorites being chocolate cake and french fries. She learned to show us exactly what she wanted by bringing us all the items...many times these would include the tv remote, an Elmo dvd, a spoon for eating, or her Pajama Bible. Moriah and her sister shared a love for Elmo and Peppa Pig, and spent many evenings playing in Moriah’s crib together. Moriah and her brother, Jadon’s relationship grew even closer, Jadon looking out for his sister, and helping with “Ya ya’s medicine and trach care.” The three siblings fought with each other over toys, played with each other, laughed with each other, and gave one another a hug goodnight before going to bed. We loved watching their relationships develop. Victoria cherished the evenings laying in Moriah’s crib singing her to sleep with Christmas songs (year round). Justin enjoyed family walks with Moriah, taking her to the festivals at our local park and to Wendy’s for ice cream. The memories are endless.

Although we are uncertain about these next few months, and where they will take us, we will be spending the next few weeks taking some time for ourselves. Our return will be difficult as we begin our new normal, but we are praying that we will learn to navigate it all.

Our hearts are forever here in the Bay Area amongst Moriah’s Nurses, Doctors, Teachers, Friends, Dwell Christian Church, the Children’s Recovery Center, and Saratoga Sub-Acute. We hope to continue to honor our angel through “Moriah’s Mission,” which was started years ago to help families in similar circumstances.

Thank you to all of you who have impacted our lives in one way or another along this journey. We thank you from the bottom of our hearts for everything.

Love,

Justin, Victoria, Jadon, Olivia, and always, angel Moriah

Septic Shock

On Monday, Moriah had her biopsy done. By Friday night, she spiked a really high fever, and by Saturday morning, we called Nurse Elaine to come in on her day off so that I could take Moriah to the ER. 

While in the ER, this sweet girl all of a sudden tanked, and went into septic shock. 

For 3 days, Moriah was out of it as she recovered, and they found bacteria in her blood. 

She is now being treated for Endocarditis for 6 weeks. 

We have now been here for 2 weeks with some ups and downs

Justin and I are switching off every 24 hours to make sure she has one of us by her side

This was the first smile she gave once she was feeling better

She has been Face Timing with Olivia and Jadon almost every day

On the good days, Moriah wants to do everything she can to jump out of her crib

So the hospital had to provide a "Sitter" to be at her bedside to keep her safe...which gives Justin and I a piece of mind when we have to leave for bathroom or food breaks. 

This girl is such a monkey.

Just yesterday, M went into septic shock AGAIN, this time not as bad as the first, but still very scary.

What's difficult is that she is being covered by three different antibiotics. They have added a 4th, and for now, it seems to be helping. 

It is very much day by day here. 

We have created a Facebook page to give more updates.

https://www.facebook.com/pages/Moments-with-Moriah/1523838487857924?ref=hl

Right now, M is resting and healing. 

Thank you for checking in on our girl.

Knee/Leg Biopsy

Over the past two years, Moriah has been getting these hard nodules on her legs, and her knee has become permanently swollen. 

After seeing a couple Doctors about it, Ortho wanted to proceed with biopsying them. 

This is Moriah the morning of the procedure, saying "bye" to brother and sister. 

She kept looking at Nurse Sharon, trying to convince her to sneak her some food. 

No dice. 

Fortunately, she went into the procedure pretty soon after we arrived. I got to rock the bunny suit, feeling slightly like a sumo wrestler.

And Moriah made out with an awesome pink cast!

A few days later, I received a call from Moriah's surgeon, telling me that the results came back as gout. He said he has never seen that in a patient so young unless they had leukemia (which Moriah doesn't have). 

Now, we are going to meet with Rheumatology and Genetics to see if we can find out why she has it. 

I won't be surprised if we never do. I've come to learn and accept that over the years that we might never figure Moriah out. 

As long as Moriah is happy, that is all that matters to us. 

Some Randoms with Moriah

There have been quite a few things happening with the Ya Ya Bear lately...

 Bonding with Brother:

There are days when M gets fed up, and doesn't want us to do anything more to her (give meds, breathing treatments, suction, etc). One night, I needed to do her trach care, but she simply refused to let me do it. So, I asked her if Jadon could do it, and this is the response she gave...

She had big smiles and totally allowed Jadon to "clean" her trach. It was pretty amazing to watch, as well as to see Jadon help his sister. Their bond is so sweet...in between all their fighting =)

Bullying Little Sister:

As for the other sibling, Ya Ya may have a couple moments where she is considered a "bully." 

This picture was taken right after Moriah pushed Olivia. 

The look of pure delight on her face when seeing her sister cry...this girl. Aye.
She did the same thing with Jadon, and eventually, she grew to adore him.
Hang in there for a few more months Olivia.

Riding her Favorite Ride:

Whenever I take the kids to Target, I let them ride this roller coaster ride that is next door. It is Moriah's favorite ride (even though you can't tell by this picture). This time, she is showing sister how to ride it...
Like a boss =)

Pool Parties:

Who says you can't hang in a pool if you have a ventilator? 

Climbing Shenanigans:

So I left the room for a minute, and this sneaky little thing had climbed on top of this toy! I quickly snapped a picture and then took her down before she fell. She was so proud of herself...and I was too, even though I reprimanded the little stinker from doing it again =)
Children with Charge Syndrome have a hard time balancing because of the malformation in their inner ears. This is sort of a big deal.

School: 

We've noticed that Moriah becomes grumpy when she doesn't attend school regularly. By Sunday, she has had enough of Mom, Dad, brother, and sister, and wants to go back!

Here, she is about to color her bird feeder

This week was all about camping. Miss Janette and Moriah are "camping out" in their tent

Moriah is concentrating hard on whatever she is touching. We love that she gets to have these new sensory experiences at school. 

Feeding Therapy:

 I saved my favorite one for last. Ever since Moriah got her frenulum clipped by ENT a few months ago, it seems like her feeding therapy has taken off.

She wanted so badly to sit with brother at the little table and feed herself

Thus far, she has learned to look down at the bowl, and spoon the food into her mouth. 

And look how happy she is about it!!

This was definitely one of those moments where your heart explodes with pride for your child. 

Keep up the good work, Ya Ya. We are so, so proud of you.

Moriah's 6th Birthday

This is another post long overdue, but I tell you, once you finish reading this, you will understand why I am playing major catch up here.

On January 23, 2014 at 10:17 am, our baby girl turned 6. 

6! 

6?

Oh my goodness. 

6.

I still can't believe it, and I still experience a vast array of emotion when I think about it.

This was a huge milestone for Moriah.

 From being told when she was a baby that she might only have a few more months to live...to this. 

We are on our knees, thanking God for her.

She is our gift, and our heart.

While we started off the day great, celebrating her Birthday with her classmates, our sweet Moriah ended up being admitted to LPCH shortly after these pictures were taken. 

And for the second time in two months, she was hospitalized with pneumonia. 

That same night, Justin had to leave the hospital with Moriah, and come home to take our sweet Jado to the emergency room as he was crying inconsolably for several hours. I immediately knew it was an ear infection the moment he asked me for wipeys "to wipe his ears and make them feel better." Diagnosis: double ear infection.

Then, Miss Olivia was up the whole night fussing with what we now know is to be her allergy to cow's milk protein. I took her in to the Doctor the very next morning. 

Raising kids is no joke. 

The highs are highs and the lows are lows. 

But, we still wouldn't trade it for anything in the world. 

We do this with the understanding that this is a season in our lives. While it's extremely trying, it, too, shall pass. 

So, before I forget it all since I can barely remember my name these days =), I will recount this beautiful morning celebrating Moriah.

She, of course, had to dazzle everyone with her Birthday feather boa that Nano got her for her 2nd Birthday. Moriah knows this day is all about her!

She had been missing a lot of school lately, so she was ecstatic to be there with all her teachers and friends...especially her best friend, her brother, who she adores...and bullies depending on the mood

Miss Jeanette signed during circle time, and Moriah paid close attention-along with Jadon

(Im grateful that Nurse Sharon takes the time to learn sign language and teaches it to my children)

When I brought over the cake, Moriah was ready to jump out of her wheelchair. This girl will do anything for food.

The whole class sang "Happy Birthday" 

And M got to hold the Number 6 

Then Jadon helped his sister open a present from Miss Rosita

We got in a quick family pick

And then came Moriah's favorite part of the morning...cake! (I should have known something was up when Jadon didn't really touch his).

Yum yum. This was the highlight of her Birthday.

Thank you to Miss Jeanette's class for celebrating with us. 

We are very thankful Moriah got to have this morning with all her friends. 

Moriah...Walking!!!

Over Moriah's school break, we took her to our local track, and had her practice walking with her walker! Despite having a fever, she did a great job, and we are so proud of her!

Luckily, Nano and Maji were here so that Moriah could show off her new skills

I love that face

When she finally got tired, we put her back in her wheelchair, and then I went running around the track with her. I didn't get very far. Her wheelchair is a beast, and I was huffing and puffing by the end of the lap. I don't know how Justin runs with her. 

Anyone heard of a wheelchair jogger that would be able to hold all her equipment? 

Last year, we had started taking her with us to the track and saw she liked it. 

However, Moriah and Co. are a bit much to run with. 

You know what...scratch that question. 

I know she will be walking soon, and then running faster than us =)

We are so proud of you and all your hard work, Moriah!
Thank you to Nurse Sharon and Moriah's teachers and therapists at preschool for working with her to reach this goal.
It is beyond amazing to see...

Ice Cream Party!!

Exactly one month later, we finally got around to celebrating Moriah's 5th Birthday with friends and family!

We had an ice cream party in honor of M's favorite food =)

And boy, was this girl excited!

Nano and Maji were up for the weekend

And Philippe and Baba came to join the fun for the party

I think Nano was first to dig in =)

Yummm

Ice cream makes everyone happy...and a bunch of happy people in one place makes for a good party

L to R: Sharon, Nano, Henry's mom Houng, Shannon and little Savannah

...Especially when you get to re-connect with old friends. Right, Sue? =)       

Our house turned into baby central, and I was a little scared to walk in case I stepped on someone, but it was so much fun to watch them all play together

Vince made Vivian one of the yummiest ice cream bowls, with just about every topping there was =)

And Jason squirted whip cream in Glori's mouth, telling her "Don't tell Mom!" 

Justin does this with Jadon and Moriah...must be a guy thing...

As if ice cream wasn't enough sugar, we had Birthday cake too. I'm so glad we did.
It was my favorite part when everyone sang "Happy Birthday" to Moriah. She got really quiet, and listened, especially when everyone sang her name...I had a mom-moment and got teary-eyed because I knew Moriah understood we were celebrating her...

She just had so much fun playing with her buddies!

Moriah, Glori, and Vivian were all catching up on some girl time

And Vivian and Moriah shared some sweet "friend" moments

(when the girls were babies, Hannah, Viv's Mom, gave me a picture frame that said "Two Peas in a Pod." I haven't had the right picture to put in that frame until now...almost 5 years later).

I don't think Moriah stopped laughing the whole party. She had the best time.

Thank you to all of our friends and family for celebrating Moriah with us. 

I know she could feel the love!

<3