Lexi's eulogy and life verse: Psalm 139:13-16

Below is the eulogy that we wrote about Lexi and that was read at her memorial service.  I'm posting it here for those who weren't at the memorial service or who didn't know Lexi or her life story. It is a testament to God's unique design of Lexi, the impact that she had in her short 6 years of life and to the life verse that we claimed for her:

Psalm 139: 13-16

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you

when I was made in the secret place.

When I was woven together in the depths of the earth,

your eyes saw my unformed body.

All the days ordained for me were written in your book

before one of them came to be.

Lexi Noelle Valladares was born on April 16, 2004 in Torrance, CA. Her parents, Fausto and Erica, and big sister Chelsea were thrilled when she arrived.  She was our “little lady” and the FECL Fam was now complete. 

Lexi began having seizures when she was six weeks old.  Although she tried almost every seizure medicine available, endured the Ketogenic diet, was hospitalized many times, and had a Vagus Nerve Stimulator implanted, these seizures could never be controlled.  Unfortunately this affected her development greatly.  Fitted with a customized wheelchair at age three, she was able to attend preschool for two years and had just completed kindergarten at Willenberg Special Education School in San Pedro.  At age five she began to lose the ability to swallow and with her low weight a great concern, a feeding tube was placed in her stomach.  As a result, she gained lots of weight and really thrived, making greater eye contact and interacting more with the world around her.  In February 2010, after nearly six years of searching, we finally learned that she had a genetic condition called CDKL5, a condition discovered in 2004 that has about only 200 cases reported worldwide. Our little lady was indeed special!

Although she never learned to walk, sit up on her own, crawl or feed herself, she was an amazing little girl with a sweet spirit about her and people were drawn to her.  She said very few words in her six years with us, but she was always able to communicate with us.  She used her legs and feet a lot to communicate. She often kicked whatever or whomever was nearby her.  She loved to roll around the floor, kicking whatever was in her path, as she deliberately made her way to her desired destination.  Lexi loved to cuddle with anyone and also loved to have her feet rubbed.  Lexi delighted in sharing a room with her big sister Chelsea for the past year and a half.  Lexi enjoyed music, whether at home or at church.  Lexi was a very easy-going, content little lady. She rarely cried or fussed and she went along wherever we went, joining us in the pool in Palm Desert, with family in San Diego, at family gatherings, Disneyland, and two trips to Hawaii.

Lexi brought so much to our home.  She brought an unexplainable peace and an everlasting joy.  It was the simple things she did that brought us such joy: smiling when Chelsea tickled her, waving her little fingers at us, watching her kick the ball over and over again as we rolled it to her on Christmas morning, or hearing her little squeaks that earned her the nickname “Pipsqueak” or just “Pip” for short.  She was also quite mischievous, often trying to trip us when we walked by her.  One time, she even destroyed a game that big sis and mom were playing- kicking the pieces all across the living room floor when we had turned our backs for just one minute.  We were sure she was telling us that she didn’t like that she wasn’t playing the game.  She grew us each in ways that only made us better- teaching us about ourselves, what it means to be a family and drawing us closer to God.  But more than anything she brought us love- it is the greatest gift that she gave us and that we could give her.  She taught us what it means to love unconditionally and with your whole heart.  It was in our moments of solitude with her, while holding her, that the peace, joy and love all came together as one.

Lexi was very loved by family, relatives, friends and her doctors. Thank you to all of you who loved our “little lady” Lexi.

My grief journey . . . Spiritual eyes . . . An inspiration!

I’ve been asking God to give me spiritual eyes to see the good that can come out of losing a child.  I fully believe that God is in control and that he has a plan and that His plan is perfect and so I trust that what I can not see is really in the works.  Sometimes we just can’t physically see all that is going on around us and so it is really important to try to see things from a different perspective and that is when “spiritual eyes” are needed.

I’ve had glimpses of how Lexi’s life and her death would impact others but today I was able to share her story and my story of walking through the grief process and in turn “inspire” someone that Lexi would have never known.

It’s been almost 2 years since Lexi died, and I am such a different person from who I was before she left us.  I’m much more serious- sometimes I feel I’ve lost that playfulness and spunk in me. I’m more mature- realizing that some things are just not as important as people make them out to be.  I think death will do that to people.  I also used to be very comfortable leading groups, like women’s events, bible studies, etc. and I have just shrunk in the thought of doing those things again and wondered if I would ever be able to be in that place again.  But, I’ve been fine with all that because I’ve been resting in this place of grief- just taking my time walking through all that needs to be processed- knowing that God is with me always and would bring me out on the other side- whatever that will look like.  I’ve been really proactive in dealing with my grief- reading books and articles, going to grief meetings, talking about my grief with others.  I want to take it all in so I can better deal with it all.

Sometimes I think the people in my life have a hard time dealing with the “new me” because they knew me so long as the “old me” and probably wonder when the “old me” will resurface again.  But, truthfully, I know I will never be who I was before.  Yes, maybe some of the “old me” will return, but I am forever shaped by Lexi and by her death and so there is now a “new me.” I am thankful for what I have learned in my grief journey and for who God is continuing to make me.  I know that He will use me for his purposes.

Which brings me to today: I was getting a massage and the masseuse asked “So, how many kids do you have?”  Ah, the ever “simple” question that is not so simple to answer anymore.  It really makes me pause to assess the situation and to see how I should answer.  In the past two years, I’ve been asked that question a bunch of times (after all, it is a very natural question, especially when talking to other moms or new people you should meet).  Only once have I answered “one”- I was in a large group of people that all didn’t know one another and so while giving a quick introduction of our names, how many kids we had, their ages, etc. I figured the best response for that situation was “one”- I mean really who wants to be hit over the head in a big group with the response of “we have two kids, but one died”- talk about a way to change the mood and dynamics of a group.  Since that time, I’ve tried to figure out a way that I can answer that question without dismissing Lexi as one of my children.  Today, thankfully, it was just me and the masseuse so I could more easily respond to that question with “two, but my youngest passed away almost 2 years ago when she was six, so that leaves me with an 11-year-old daughter.”  Of course, upon hearing this, she expressed her sorrow as most people do, and which I appreciate.  And then she went on to ask me about Lexi and about how she died, etc.  I had the wonderful privilege of sharing Lexi’s life with this woman who had asked about my daughter- telling her all about the seizures, medications, brain implant surgery, feed tube, etc.  And then, she said “I’m sure her death was difficult but it must bring you some joy to know that she is no longer suffering in this world.”  And then I got to share with her, “Despite all of those horrible things that occurred, she did not suffer.  She was a delight; she communicated with us; she was a light to this world and to our lives; she interacted with the world around her; she went to school- riding the bus in her wheelchair all by herself.”  The masseuse was so amazed: “Really?” she said.  And then she asked “How did people react to her when they saw her?”  I then got to tell her about her physical beauty and how people were initially drawn to her because of her beautiful ivory skin, her big brown eyes and extremely long eyelashes, her silky soft brown hair, but then people feel in love with her because of her spirit- her gentleness and the peace that exuded from her that just made you want to be around her.  I got to talk about the relationship that she had with her sister- how she just loved to be around her big sister, Chelsea, and how she would just be so happy whenever Chelsea was around.

Normally, I don’t like to talk at all or have the masseuse talk either while I am getting a massage.  But, today, I was thankful that someone asked questions because they were genuinely wondering.  A lot of people don’t ask questions or even mention Lexi’s name, for fear that they might upset me.  I appreciate so much those that ask, instead of not saying anything at all.  And so, I just talked, answering any questions that she wanted to ask.

The masseuse then went on to tell me that her sister (who she practically raised so she was more like a daughter to her) committed suicide 4 years ago. The masseuse then says “and I have never dealt with my grief like you have.  I haven’t even ever said goodbye to my sister and dealt with the anger and pain I have.  I want to be in a place like you are.” We continued to talk some more and this is where, even though my physical eyes were shut and covered by a towel, my “spiritual eyes” could see that it was in this discussion, that God was weaving a little more “good” out of the loss of a child . . . my child.  At the end of my time with her, as I thanked her for a great massage, she said “Thank you for sharing your story with me. You are an inspiration.”  Wow- an inspiration!  Oh, how I hope that she will start her walk along her own grief journey . . . as I continue walking along on my own grief journey, continuing to ask God for “spiritual eyes” to see what I may miss with my own eyes.

Celebrating Lexi's 8th birthday

Today, Lexi would have been 8 years old. We planned a special day to celebrate her life today. The three of us have been on spring break for the past week and today we were supposed to go back to work/school. I decided to take the day off of work and we kept Chelsea home from school today so that the three of us could spend the day together celebrating Lexi and her special day. A few months ago I heard about "The Birthday Project" which encourages people to do kind acts for others on their birthday- often one kind act for each year old you are. I did 38 kind deeds in February (about one a day) to celebrate my birthday this year and so we decided that we would do 8 kind deeds- we called them "blessings"- in order to celebrate Lexi's birthday. Originally, the plan was to do all 8 of the blessings in one day: today on her birthday. However, we also had a few other ways that we wanted to spend the day and we quickly realized that we weren't going to be able to get all 8 blessings done in one day. So, we made a list of the 8 blessings we wanted to do and we got to three of them today. Looking forward to getting to the other 5 later this week.

Last night, I made cake pops and mini cupcakes so that we could celebrate Lexi's birthday by handing them out to special people throughout the day. Of course they were mainly pink- the epitome of Lexi and all her girly sweetness!

This morning, we set out to Lexi's old school: Willenberg Special Education Center in San Pedro where we delivered flowers and cake pops to her two teachers: her preschool teacher who she was with for 2 1/2 years and her kindergarten teacher who she spent her last year in school with. The preschool teacher was so surprised to see us and we shared some hugs. Unfortunately Lexi's kindergarten teacher wasn't there today but we did leave the flowers and a note for her to get tomorrow when she comes in to work. I'm smiling just thinking of the sweet surprise she is not even expecting tomorrow. We wish we were able to see a lot more people at Willenberg as everyone there loved Lexi and was so great with her.

Next, we set out for Lexi's pediatrician's office. Dr. Shoji and her nurse Paige were incredible to us and to Lexi. Dr. Shoji always gave the best the Lexi and referred us to many great specialists, but always keeping tabs on Lexi's overall care. Dr. Shoji made a personal call to us in the Pediatric ICU on the day that Lexi died. We are forever grateful for all of the great doctors who cared so personally for Lexi. We wish we could have blessed them all personally today but many of them are farther away. We brought Dr. Shoji and Paige flowers, cake pops and a gift certificate for lunch at Bristol Farms Cafe which is across the street from their Palos Verdes office. We are always so amazed that they will drop whatever they are doing to spend time with us. Today was no exception and we enjoyed chatting with them in the office when we delivered the gifts.

After our first two blessings, we were on our way to spend some time together as a family. We stopped off at Party City to get three balloons- a purple one, a pink one, and a yellow one- Lexi's three favorite colors- so that we could release them later in the day. We then enjoyed a lunch at Guiliano's (originally we were going to eat at the beach, but it was getting late and we were hungry so we just ate our "picnic lunch" right there).

Our next stop was Veteran's Park in Redondo Beach where we had our own private balloon release- sending our love and birthday wishes up to Lexi in heaven. There is something peaceful and beautiful about seeing the balloons float up in the sky.

After the release, the three of us went for a 3 mile bike ride from Redondo Beach Pier to Torrance Beach and back. It was a great way for us to spend the day together, out in nature, enjoying God's creation and peacefully riding along with the wind gently blowing.

After the bike ride, we had time for just one more blessing before we had to head home so that Fausto could go to work (yep, he still had to work tonight). We drove to our church and tried to find our pastor/friend who was always with Lexi throughout various times in her life. When the church staff couldn't find him, we almost left but thankfully we were able to reach our friend Jason on his cell phone and were able to find him in a different part of the church. Jason visited Lexi in the hospital on the day she was born and prayed over her that day; little did we know then how much prayer he would do over her in a hospital bed. He visited Lexi every time she was in the hospital and was with us in the hospital room the day she died. She knew his voice and was always content and peaceful when he would preach on any given Sunday in church. Today, we were happy to be able to give him some cake pops and a gift certificate for lunch at one of his favorite places.

After Fausto went to work, Chelsea and I did a little shopping (somebody's got to get presents, right?- I got a shirt, but, of course, Chelsea got the most). Then, we delivered cake pops to Lexi's Auntie Ali and Uncle Joep and to Lexi's Ama.

We had a lot of fun celebrating Lexi's birthday by celebrating some special people in her life. We know Lexi would have been happy to celebrate her special day by blessing others. She was indeed a blessing to so many. We are thankful to be able to remember and honor her in this way and to let Lexi's Legacy continue. Looking forward to continuing with the 8 blessings later this week.

Keeping it real . . . it's still just as difficult!

I'll be real honest here . . . the second year is not any easier than the first year in grieving the loss of sweet Lexi. In fact, in many ways, it is probably harder. But, then again, maybe I have just forgotten how hard it really was those first many months. I am still amazed at how we got through it all- being in the hospital that day, seeing her in the hospital bed hooked up to all the machines, her actual passing, the suddenness of it all, all the decisions we had to make so quickly, planning her memorial service and then actually attending. I really had no idea how I was going to get through that day. For those who say that "time heals all wounds"- so far that has not been the case. I try not to be negative, but instead to focus on the positive, but I also want to be realistic and honest, especially for any people out there who look at others and think that they have it all together. In reality, there are a lot of hurting people who may look like they have it all together but are almost at their breaking point.

It has been four months since I have posted to this blog. And it hasn't been because I have forgotten about it or not wanted to update it. I just haven't really known what to say. Inside, I am just a jumbled mess of emotions. I'm trying to process so much of this grief and do a lot of actual things that "professionals" recommend doing in the grieving process. But, I am still a mess!

My dad passed away just 5 months before Lexi did. I loved my dad dearly and had a great relationship with him. But, I have not had as hard of a time processing that grief as I have with Lexi. I am sure it has to do with the fact that my dad died in his seventies. He lived a full life. Lexi died at 6 years old. No parent expects to bury their own child, let along a child at 6 years old. I am sure it also has to do with the fact that I had been gone from my dad's house and not under his direct, daily guidance for almost 20 years. On the other hand, I spent every day with Lexi and cared for her needs in an intense way. She is greatly missed from our every day life.

A few weeks ago, the three of us were driving to Chelsea's school in the morning and a song that we played at Lexi's memorial service came on the radio. I turned up the radio and really enjoyed hearing that song; it made me smile. Later that same day, the exact same song came on the radio but this time it made me sad and tears welled up. Chelsea mentioned that we had just heard that song earlier in the day and I didn't cry then so why the difference. I told her that in the morning, we usually never had Lexi with us in the car (as she was already at school) but that in the afternoon, we would always have her in the car with us, in the backseat, sitting in her car seat, content to go with us where ever we would take her. And so, at that moment, a time when she normally would have been with us, it was overwhelming not to have her there when that is what we knew. It is these little things that take great work in processing the emotions that continue to come up.

The last four months have been especially difficult because I am having a harder time "feeling her presence" each day. During the first year, I felt her presence daily, but now it is harder and more of a searching for that same presence. I think of her every day but it is not the same as feeling her presence. It is difficult to explain.

Here's to keeping it real!

One year anniversary!

This has been a year of many firsts for us and the one year anniversary is like an end to all of those "firsts." We will no longer experience our first start of a new school year, first Halloween, Thanksgiving, Christmas or New Years, first birthday, first mother's day, or first father's day without Lexi. Although we will still experience all those events without her, today marks the end of experiencing those without her for the first time. And it means that we got through each of those. And it is a testament that no matter how difficult each one was, we will get through all of the subsequent ones to come.

We purposely planned some meaningful things to do today to help us get through this day and deal with all of the emotions that we might possibly feel today.

Chelsea and I decided about 11 months ago that we would grow our hair out so that we could donate it in memory of Lexi. So, we started off today by each of us having our hair chopped off. We are both very excited about our short, new hair styles.

After the haircuts, we had some girl time (me, Chelsea, my sister Alison, and my mom) while we all got manicures and pedicures.

My sister gave me a beautiful gift today- a necklace with both of my girls' pictures on them. It was such a special gift and I loved wearing it today. My mom has been working on a quilt made out of all of Lexi's clothes. She finished it last night and gave it to me today and we were able to display it tonight at the event.

We asked friends and family to join us for a special evening of remembrance and celebration of her life, and to stand together with us today. So, we had a fundraiser for the "Lexi's Legacy Memorial Fund" which involved a bingo night, a silent auction and raffle. It was a great way for us to celebrate our little lady and to also raise money for the memorial fund which will help other special needs family.

I know that even though we have reached the one year mark, there is still much grieving, and processing of our grief to do. I've heard that some say the second year is just as tough as the first. Only time will tell for us as we continue to grieve, while still living with joy and continuing to share Lexi's life with others for God's glory. Excited to see how God will continue to work and allow us to share Lexi's legacy.

A Blooming Reminder

In less than a week, on July 1st, the one-year anniversary of Lexi's passing will be upon us. The year has been difficult, as we experienced many "firsts" without her: school starting, Halloween, Thanksgiving, Christmas, New Year's, her birthday, Chelsea's birthday, Mother's day, Father's day, etc.

Her memorial service was July 9th last year. And that day we came home from the service and found a beautiful sight in our yard, something that I found to be amazing. Out of no where, a PINK gladiolus flower bloomed tall and strong in our planter. In the twelve years that we have lived in our house, we have NEVER had any gladiolus flowers on our property. Amidst our sadness at coming home without Lexi, that day we were greeted by a wonderful pink reminder of our little girl. The flower bloomed for a long time, without any tending by me. It eventually died and disappeared and I didn't think of it again.

The other day, we came home and there stood the pink gladiolus flower blooming again in the exact same spot. It was if to remind us, especially in the nearing of the one-year anniversary, that our little girl is alive and blooming . . . in heaven! I love seeing that pink gladiolus each day and am amazed at its height- standing taller than any of the other flowers in our planter.

Here is a picture I took a few days ago. Today, it stands even taller.

The 1st

Here we are at another "1st." The first of each month always causes us to pause as we realize that another month has passed without Lexi in our lives. June 1st marks the 11th month since her passing.

Today, at work, I read a persuasive essay that one of my high school students submitted in which he was trying to persuade the reader that abortion should continue to be legal. One of his points was that "having a child with special needs requires a lot of time, money, commitment and support" and that "most special needs children require additional health care, services, and help from others" and therefore, if it is known during pregnancy that the child will have "special needs" then "abortion provides an alternative." I sat there, as I read his essay, thinking about Lexi and her precious life. I could only respond by telling him about Lexi- that although she never learned to walk, talk, sit up on her own, etc. she was an amazing little girl who taught us so much. I can not imagine my life without her in it. I told him that yes, her "special needs" brought about much work and required "a lot of time, money, commitment and support" but it was all worth it because she was a life and she had great purpose.

I love thinking about the legacy that Lexi leaves and all the ways that God used, and will continue to use, her life. Today, her life stands as a testament for God's love of all- even those (especially those) who have "special needs" and as a reminder that life is precious and full of purpose- even a life that the world may not see as "normal" and thus could be easily aborted.

As we think about, and prepare for the next "1st of the month," we know that the one-year anniversary of Lexi's passing will most likely be the hardest "1st." We will surround ourselves with friends and family that day and continue sharing Lexi's legacy through the "Lexi's Legacy Memorial Fund."

Lexi's Legacy Memorial Fund

We are excited to announce that the "Lexi's Legacy Memorial Fund" is now official.

At the time of Lexi's passing, in lieu of flowers, our friends and family donated money to a fund that we created in Lexi's memory. At the time, our bank was unable to open a memorial fund because they are a small bank and do not handle those types of accounts. Since then, we have been working with another bank that has allowed us to open the memorial fund and all paperwork has finally been completed. All donations received will be used to financially help other special needs families. We know, all to well, the cost of equipment, medicine, and supplies that can be expensive in caring for a special needs child. The fund will help offset these costs to families and in addition provide a sense of support to the family. Giving to others has been a great way for us to remember and honor Lexi, and has helped us in our own grieving process.

Should you want to donate to this fund, and help other special needs families, checks can be made out to: "Lexi's Legacy Memorial Fund" Thank you for helping us continue to share Lexi's legacy with others.

Special Days . . . Special Memories

Today is Lexi's big sister's birthday. And although this is not Lexi's day, but instead Chelsea's special day, Lexi is greatly missed on this day.

A few days ago, we celebrated Chelsea's birthday by having 11 of her friends over to our house for a party. We love having parties and so I woke up excited to have this party for Chelsea. But, there was definitely something (someone) missing. I was very aware of the absence and honestly, it saddened me to know that Chelsea would no longer celebrate her birthdays with her sister.

Lexi was always an important part of Chelsea's birthday parties and it makes me smile proudly when I remember how Chelsea included Lexi in all her birthday activities and how proud Chelsea was to have all of her friends meet her sister Lexi. I love remembering how Chelsea would help Lexi unwrap her birthday or Christmas gifts and how Chelsea would hold them up for Lexi to see and then place them in her lap until Lexi was surrounded by all her gifts.

I know there will be many more "special days" that will be different because Lexi is not here. But, I am thankful for the pictures we have that will remind Chelsea of her special bond with her sister. These are some of my favorite pictures of them on birthdays and at Christmas as Chelsea lovingly includes Lexi in it all.

The girls celebrate their birthdays together in 2010. I love the look here that Chelsea gives to Lexi as Chelsea glances over her shoulder to make sure that Lexi sees the candles and is aware that everyone is singing happy birthday to BOTH of them.

Although not the best picture, this is one of my favorite pictures because Chelsea was so PROUD to show off Lexi to all of her friends at Chelsea's 7th tea party birthday. Chelsea was so happy to take this picture with her sister.

Christmas 2009: Chelsea empties Lexi's stocking, making sure to show everything to Lexi.

Lexi surrounded by the gifts that Chelsea has piled in her lap.

I love the expression that Lexi has here. She seems rather bored and unimpressed with the things that Chelsea is pulling out of her stocking.

Chelsea helping Lexi unwrap a Christmas present.

100 days (+) in a season of grief

I know it has been a lot longer than 100 days since Lexi passed, but today is the 100th day since I signed up for the "A Season of Grief" daily emails. It is neat to see that number, 100, knowing that I have made it through 100 (and more) days of grief. Thank you Jesus!

I've learned so much through the grieving process and love to continue to see where God will lead me on this journey. I am so thankful for His plan and purpose; although my view is limited, He sees the full view and has everything under control.