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.