Happy Birthday in Heaven BRIBRI!

Your favorite day! 

 

Let’s face it a birthday in heaven is not like a birthday on earth. I doubt we would care much about earthly things when we are in the presence of God.  

But, since we are still here, and we dearly miss our precious Brielle, we will celebrate.  

 

HAPPIEST OF BIRTHDAYS MY PRECIOUS BRIBRI!! 

Today you would have been 9 years old, birthdays were your favorite thing. You had many birthdays because you would steal everyone's birthday and say “my birthday” “my cake” “mine?”  

 

As I’m typing this... I’m playing Las Mananitas. I always play it birthday mornings for the kids. It’s a great way to start a birthday. 

 

Of course, today is a very difficult day for us. But, a very beautiful one also.  

Today 9 years ago I gave birth to my last child. My forever baby in every way.  

I love that she was my last baby, and my forever baby. 

 

I recently had to write Bri a letter telling her how much I miss her, it was very hard to do, but so good for me. Many things I wanted to tell her, many things I needed to say out loud. Yeah, I had to read it to my counselor out loud, I wasn’t expecting that but it served me well.  

 

Today, we will be visiting her grave for the first time since her burial. Our little Jaileen is also buried there. Jaileen’s passing was very tragic and traumatic, and I was not saved or understood eternity with Jesus. Brielle’s passing brought a lot of healing to Jaileen’s passing. I’m happy they are together in heaven. It will be good for me to visit both my girls' grave sites today. I know their little bodies were buried there, but I am able to separate our earthly bodies to our heavenly bodies.  

I believe more than anything that they are made new and in the presence of our Lord and savior.... and I know that I know I will be with them one day.  

Til then I will honor their memory and speak their names, because they are my babies. You only have one mother, your earthly mother, and her job is to always love you, care for you, nurture you, and miss you.  

 

Happy birthday my love, today you would have been 9. But the Lord wanted you to be forever 8 on earth. Just happens to be my favorite number! 

 

I love you forever and ever! To the universe and beyond! 

It’s November.

 

It’s November.

 

It’s been three months since my precious girl left this world. 

 

I “knew” this day would come, I have suffered the loss of a child before. I “knew” the pain. ...We don’t know a thing.

I never thought I was prepared, but I sure did everything in my human power to “prepare”.

I’ve posted in the previous blog entries how precious Bri was and the life I shared with my precious Brielle. I miss her everyday, every moment. My subconscious is always seeking for her. I call out her name, start walking for her room... and have separation anxiety from her room and our home. 

I am not the same, I am not always okay.... but I always do rejoice knowing she is in the safest most awesome place. Heaven.  

“Trust in the Lord with all your heart and lean not on your own understanding;

in all your ways submit to him, and he will make your paths straight.”

Proverbs 3:5-6

This bible verse has been whispered in my ear by the Lord or an angel as I go through this season of living without my precious girl.

There is no way I can get through these days of grief and desperation without JESUS! He is my comforter.

 

I feared this season for so long. I had no idea how I would survive it. Oh boy has the Lord shown up and shown off. In every aspect of my life.

Bri was such a light, she was a little miracle, the Lord really outdid himself giving me this amazing girl, choosing me as her mama. 

 

These 3 months have been busy, and extremely life changing for our family, this includes her parents, siblings, extended family, friends… and her Coco (her bestfriend, her nurse)

 

In this blog I can only speak for myself as Brielle's mother. Everyone has their own grief, emotions, and their own way of how they are processing Bri’s loss.

As for her sisters and myself, we have started counseling, and it has been a huge blessing for us. (So please if you have not done counseling please do, and don’t wait until your child passes, or until you have time, it’s priority!)

We talk about Bri a lot, we make sure she is still a part of us in many ways. Bri was such a funny girl and her presence was huge! She had the best sayings,  phrases, nicknames for others, and faces… she could say a lot just by a look, a stare, or just simply looking away haha.

& well in this household we have pretty awesome personalities so we repeat all her sayings and faces haha…. I came to realize she got a lot of her shenanigans from me. I can be quite the character when I get annoyed, or want to get a reaction from someone… of course my husband helped pointing out my “kookoo baby” personality… and well I’m just gonna own it!

 

We have had such amazing support, you know the saying you know who your people are when poop hits the fan. We are beyond grateful for everyone that has poured their love and support. So thank you! Thank you!

 

There are moments when I feel completely numb, and I know my mind is in defense, it doesn’t want me to feel any sort of emotion. So I get busy. But then boom something gets me and I cry, and I hold her things and cry some more… but usually I cry and then laugh hysterically. I don’t know why but its been a combination. Like I said the Lord knew what he was doing with that kid. She was hilarious, I automatically remember something funny. I just remembered this... when I would laugh hysterically she would “fake laugh” with me, and if she was annoyed by me she would say “TOP IT MOMMY” “GO TIMEOUT”  and roll her eyes and look away. Hahaha!

If you know me personally, I am a natural jokester and find many things and people amusing. Thank you Lord for that, what a great blessing. 

Bri's Trip:

This amazing event we did in memory of our precious Brielle, it took a while for me to process and take in. I just took my time to process it all.

We went on a 5,020 mile road trip with our family did it in 8 days. Yep! 8 days 5,020 miles.

 

Back story… to this trip!

(sorry if I already lost you as a reader, but it’s my blog and I want myself and my kids to read this one day. If you are still hanging in there.. you rock!)

 

So when Aaron (my husband) and I started getting to know each other, I would tell him anything and everything under the sun to scare him away from loving me and wanting to be with me. One of them was because of Bri, it was just a lot for someone to sign up for. Of course he’s an extremely stubborn man and wanted everything to do with Bri! She was the icing to the cake! 

Well one of the things I told him was when she passes I don’t know what will be of me, so Ashley, Bella and I will go on a trip and ditch everything and everyone. HA! Definitely did not happen…. Because the LORD worked on this bitter heart over the years and did amazing things!

So after Bri passed, all her things were all over the house and well if you’ve been to our house, seen pics or live this life…. Bri’s stuff took over this house, and of course it’d be pretty impossible to ever part with her things after losing her. Well… Aaron surprised me by reminding me of that one thing I said a few years ago. “you know how you said you were going to go on a trip after Bri passed, well we are, we are going to deliver all her stuff to other I-Cell children” … so we planned this grand trip during the kids fall break. It was a Midwest trip, I believe we covered 13 states. I got to see some of my people... some very close friends that I consider family, they also have I-cell babies, and met them through this journey.

(I will post all pics on FB) We got to see 5 I-cell babies. Nahyeli in Texas, Blakely in Illinois, Aubrey in Illinois, Reese in Michigan, and Loretta in Indiana, Loretta is sisters with Joanna and Twila who have also left us.

It was the most amazing trip I have done. 

So lets go back a little to the preparation of the trip. 

I gathered all of Bri’s Medical supplies, gear, and mobility equipment (wheelchairs, chairs, walkers etc). Although it was a very emotional task to take on. It was so good for me and our family. I got to touch all her stuff, sort them, and honestly it was nice to get rid of those things. Although those things helped maximize her life, and I am truly grateful for it all. It was a love/hate feeling towards it. and well knowing I’d be blessing these babies was a great motivator to choose each thing for each child and pack it up.

 

We filled up a trailer with her stuff and headed out. September 25^th-Octobet 2^nd, 2021. I keep calling it Bri’s trip... so it’s staying that way.

( I will post pics and details on facebook)

 

So yes, we are in November and I have yet to post it on social media... like I said it was a lot to process!

 I couldn’t really get myself to see the pictures of the trip. When we got back home all her equipment was gone, it was very hard for me to process that. I felt good about blessing others of course, but I just knew I had to take it all in slowly.

Jumped into something else right after getting back too.. Bella asked if she could move into Bri’s room. Which I thought was a good idea and we all felt good about the decision. But like I said Bri took over this house, she had a lot of stuff. Only medical stuff and equipment was gone. Her drawers and closet were still full of all her things. Clothes, toys, meds, things.. lots of things! Bri and her Coco were packrats haha! Well I had a big part of it… we could just not part with many things. 

Bella and I did a great job in keeping Bri’s things and memory in her room but still make it Bella’s room. We are very happy with the outcome.

The fist night was very hard. After I tucked Bella into bed, and turned off the lights, she saw all the cracks of light just like she did when she would sleep with Bri, when she asked her to sleep with her. I went in there with her and we cried our little hearts out. The next day I rearranged her bed and now it's perfect!

I liked using Bri’s room for meetings with my girls, or when they just want to talk and have some comfort and privacy.

Thankfully, it's still the room of comfort! We like that! I may need to get a full bed in there because the whole Ashley, Bella and mom trying to cuddle in that small twin bed is not working anymore with these tall girls. (:

After I moved Bella into Bri’s room. I made Bella’s room my office. I started a new business, and will be starting school in the near future. So I needed my MAMA CAVE. Plus, I needed to have a place where I have some of Bri’s special things displayed and  can look at everyday. (:  I have her little hammer near by incase I need to hammer someone’s teeth… bahaha!

 

Well my mama cave is about ready. So I took on another thing... most of Bri’s closet was full of toys, so Bella and I just went through all millions of toys she had and sorted them. Yes we kept a lot but we were able to get rid of a tiny bit… hey its something. We had many funny moments, it was good for us. What I thought was cute and funny and didn’t say anything to Bella,... but she started reclaiming toys Bri had taken from her or she had gifted her. Super sweet! So Bella has a closet she can use now. The whole top her closet is full of Bri’s toys that our grandbabies will one day use.

I still have her clothes, pictures and many momentous… but that will need to wait for another time. I am not rushing it, just doing it as it comes. 

 

I wrote a lot and don’t feel like proof reading. So please forgive me, if something is misspelled or doesn’t make sense.

I just had to write.

 

Brielle’s Birthday is coming up 11/12 … man I miss typing 11/12/12... I actually had to do it a lot!

What a special day! The day my forever baby was born! 

 

 

 

 

 

 

 

 

 

 

 

 

Brielle's Way

First and foremost I want to thank and praise our Lord, I give him all the glory in every detail of Brielle's life. 

I want to thank God for giving me the privilege to be Brielle's mommy. 

I want to thank him for his amazing love and grace. 

I want to thank him for answering every prayer all the way to her last moment here with us. 

I want to thank Ashley and Bella for being such amazing and wonderful sisters since the day she was born. 

Not only were you girls amazing sisters but amazing daughters. 

You girls helped maximize her life to the very best. 

I want to thank Javier for all our girls, and for being the loving, fun, silly dad they very much enjoyed. 

For allowing me and trusting me to take the lead and care for Bri the way I did. 

I want to thank Coco for caring for Bri as if she was her own, we both needed our Coco, available in everyway until the very end. 

I want to thank Dorothy for all the help  and care not only with Bri but our whole family. 

I want to thank Kiki for helping Bri maximize her abilities, all the fun, and being such an amazing teacher to me. 

I want to thank my parents and my sister for being available for me and the girls in so many ways. 

I want to thank Aaron, for being an amazing husband, a great Pepe and giving me all this time and support, to care and enjoy my baby as she declined these last 3 years. I want to thank siblings Isaac, Emma and Alyssa for completing our family and being part of her shenanigan’s. 

Thank you to our extended family, and friends, that have been available for us in prayer and help. 

Brielle's Way

Brielle was the light to my world. Since the day I gave birth to her my life revolved around this little girl. 

I know we are not suppose to make idols of anything, and I have asked God to forgive me. 

When she said jump, I jumped...and you have all been witness! 

I got better… but Brielle always got her way. 

She loved mommy hugs, and I loved BriBri hugs, God made her little body to fit perfectly in my arms.

I breathed in every bit of her, she gave me joy, love, courage, strength, endurance and peace. She was my Brave Little Brielle.

She was a little piece of Heaven, because of my life with her, I came know and accept my savior Jesus Christ, and He change my life through her. 

Bri always made sure I was close by, so she went where I went, I made stations for her all over the house. 

I was her transportation, her hands and feet... and then as she demanded many also played that role.

Bri was the best boss ever! Our little boss-baby! She was so demanding, she seriously had no mercy. 

She was going to get her way, one way or another. She always won!

I can go on and on...share a million stories. 

But, I know you all already have an idea of the great love and bond between us, from sharing her with the world throughout her life.

These 8, almost 9 years blessed our lives in so many unbelievable ways.

She left us in such great peace. 

I know it was a surprise to many, but God gave me an overwhelming feeling the last day I was with her to talk to her about going home to Jesus. She knotted her little head in agreement. I had been talking to God all weekend, I told him I was ready and she was too. 

We watched little mermaid and combed each others hair with her dinglehopper. 

I also painted her pretty nails.

We hugged, kissed and loved on each other so so much. 

My forever baby, my BriBri, my mamas, my little piece of heaven, I cannot wait for the day our Lord calls me home. 

To reunite with you and your sister and be in the presence of our Heavenly Father.

To be in Heaven is to be with Jesus. 

For now I will miss you and remember you for the joy, love, sass and spunk you brought to my world. 

I will forever be your mommy, mama, mom, Kim, Kimberly Etzel.

Te amo. I love.... I love you more!

Spring Come Back

Hello Brave Little Brielle lovers!



It’s been awhile since I blogged. It was always my intention to come back and blog. I guess I just found it easier to post a picture or update on Facebook. Gosh I read a bit through some of my titles and well lots of things changed.


I feel the need to start blogging so I can sort my thoughts, record what’s going on with her, be a resource, and receive guidance from others.



I actually do have a few things that I wrote and just didn’t post. If you are a FB fan you are pretty caught up with her.

I wrote about Brielle moving homes, because I got married. She gained a bonus dad and 3 extra siblings. We moved to a rural area in the outskirts of Maricopa, Az. Change of pace for sure. I’ve wrote about being a single mom, then having a blended family. Living out here. Etc.

I wrote about changes that happened with Brielle, as the disease has progressed. Her mobility declining, dependency on oxygen, just things she stopped doing.

Many reasons why I didn’t post it… but mainly because its so heartbreaking to write about your child’s deterioration.

I don’t plan on posting any of those entries.


I would like to start from what’s going on today and moving forward. It will be beneficial for me to look back on things one day.



I want to thank every single person that has prayed for Brielle and my family throughout the years. GOD is so GOOD and so BIG. Thank you so much for all your prayers.



Love,
KE -Brielle's mama

it's been awhile

It's been along time since I wrote... I've actually decided to take a good long break from many things.

If you follow Brielle on FB, you know she is healthy and continues to be as sassy as can be. The girls and I are doing well. They are very joyful and just go with the flow.

We stay busy, all the girls including Brielle; cruise all over the city with me. Both my jobs get me out a lot and they just tag along for the ride. I have two great nurses that take amazing care of Brielle, so grateful for them.

Our lives at home have stayed the same, the biggest change is that I'm busting my butt working all they time, but both my jobs are very flexible to where I can be available for the girls, particularly Bri whenever needed. 

Been thinking a lot about the blog and why I started it. Although, there is not a lot I share anymore about Brielle and I-Cell, please know that my blog was meant with the intention to help new I-cell families.

It's very important you join our I-Cell support group on Facebook. We have great families and advocates on there. A lot of information that is shared to give your child the best quality of life.  

As for now I don't have a lot to write about. Just cruisin...

Ears Ears Ears

We took a trip to California to visit family and meet up with some I-Cell babies. (Post to come)

While the visit Brielle struggled with severe constipation, infection in both ears and to top it off caught a cold. 

According to my last post I was feeling very optimistic about her health but just like that things can go down hill.

Today Brielle had a visit with her Otolaryngology/Neurotology doctor. Ears were suctioned, had a strep swab & pressure test. 

No strep, just fighting a bug. Swollen throat, reason for the chocking and gagging. She's very narrow so definitely compromising her swallowing. 

I had my little helper with me today; Ashley my 11yr old. I had to make her step out of the room she kept covering her eyes at the sight of the procedure, she can't stand seeing her sissy in any type of discomfort. 

Good news her fever finally broke last night. 

Bad news, her ear tubes fell out of place. I need to make a decision to replace the tubes or continue antibiotic drops to see how she does. So far it's been recurring ear infections/ drainage. If we go through with the replacement of the tubes; she will need sedation. She wouldn't need to be intubated, just mask; down for 6-7 minutes.  

Decisions... decisions.

I'm definitely leaning towards getting the tubes replaced. Will need to make sure she is completely out of the woods with this sickness and before flu season starts. 

I have faith God will line everything up for us to make the best decision and help her get over this bug ASAP. 

Thank you for the continued prayers!! 

Something I hear a lot ... Slow & Steady

It's been since Oct. 2014, since Bri was been this sick. Oct. 2014 she was in the hospital with pneumonia for a few days. Very scary, first experience.

She's been sick in between then and now. I have learned many things along the way and my care for her has changed, a lot. I try to fuel her with good supplements to build her immunity. Even when she does get sick, she's been able to fight it on her own, just doing homeopathic remedies. Even fought off the flu a month ago, she went through the aches and chills got rid of it in 3 days. I've been working very hard, helping her stay strong.

This time around I tried it all but this sickness got the best of her, she was fighting something her little body was not able to handle. After a couple days of being able to control the fever with baths, home remedies. I finally started treating the fever when I couldn't keep it down naturally, Tylenol helped drop the fever from 103-104. Finally took her to the Dr. and we started treating her as she had pneumonia. Really we didn't do X-rays, or hear fluid in the lungs; just due to the symptoms. I still waited til that night to hold off on antibiotics, but my gut-fear got the best of me and started her on them Monday night. Definitely didn't want to risk the chance. 

Last night, she finally asked for food, had some bone broth, and her teta (bottle). She's now sitting unattended and talking to us more. Took a toll on her little body. I'm just happy we finally got some fluids in her. 

Still dependent on O2. Which is expected with all her respiratory issues.

Luckily I had our day nurse yesterday and got somethings done around the house and my night nurse was able to work longer and got caught up on my ZzZz's. I'm hopeful for a better day, she's such a strong baby. 

I've had many people tell me she's beating the odds when it comes to what is expected from I-CELL children. She is very mobile, verbal, etc. To be honest, I feel like there's a large spectrum within I-CELL kids. It may have to do with their mutation, the progression etc. who knows? Just because Bri is hitting milestones we never imagined she'd achieve... doesn't guarantee us anything.

I simple cold can defeat her. 

Time is not promised. We know the "life expectancy" those numbers don't lie. The majority of I-CELL kids don't make it pass their 5th birthday. Yes, there are a few that have, but overall, it is rare. I've actually taken count myself, from all the kiddos I know of that have passed. Some don't even make it past their 2nd. 

I've tried my best to keep these situations as peaceful as possible at home. (I know these situations can go from great to zero in no time.) I don't want any panic or stress. I know it's a very hard situation on us all. It takes a huge toll on my girls to see their sister sick, or hear the machines going off. They have many questions. This can be very traumatizing for them, I am doing my best to be honest with them, peaceful and hopeful. 

I know Bri will get through this one. It is not her time, not now. But, I can see how this disease is damaging her, her airways are narrowing, her respiratory issues are getting worse. It doesn't matter how well I care for her, how strong she is, we won't be able to defeat I-CELL. Not in her life time.