Monday, July 27, 2015

Happy 5th birthday Lila

Dear Lila
Happy birthday my love. Another year, another birthday without you. I hope this year you and your friend Eliza are giddily eating an elaborate and beautiful cake and putting your seldom used tastebuds to good use. I hope the most amazing choir of angels are singing to you and you are celebrating by dancing on your perfect legs. I imagine you with frosting on your lips and a contagious giggle that you just can't seem to stop. I imagine you and it makes me happy.
This birthday hit me hard. I think maybe its because you were so close to your fourth birthday when you died that I just rounded up. You will forever be my four year old. But now a fifth birthday has come and you had no time in year five. No smiles, no laughter was heard. No cuddles on the couch and no looks from under those long lashes. Another number has been attributed to you and yet you are still only four. I didn't get to know Five year old Lila, to drink you in.
I am sure that you would be getting big, maybe I would be worried that your car seat and stroller were no longer fitting you. Maybe even your teeny tiny feet would grow a bit. I am sure that there would be moments I would fear for your safety from a rambunctious little sister. Maybe there would have been lots of hospital stays but  maybe just maybe we would have had a year free of medical nonsense.  I am sure the neighborhood kids would love you and lay by your side and talk to you. They remember you now and talk about you even though they never met you. I keep wishing "just one more year" and yet I know that I would have always wished that. But oh how I wish that you could have made this house your home, to swim in the pool and give me some memories here. I just want more. I want so much more from you, I still do. I don't know why you had to go.
This year I have struggled with feeling your absence. I felt like you are farther away. I have prayed for a moment with you, to maybe hear your precious voice, to see you standing, anything and yet I have only had subtle moments,  a fleeting feeling you were with me. Maybe I should have come to expect that. You were always subtle and you always made me work for it. I wonder if it is my fault. If I am somehow so angry about you not being here that I am not open enough for you to come back to me. I hope that I can deserve a moment with you, even if in a dream. I want so much to have any interaction with you. Any moment of Lila.
People seem to be moving on. As one would expect I suppose.  But discussions about you are becoming less frequent, your name is less spoken and people around me seem to be continuing on with their lives. I feel like you died yesterday. Its all so fresh and new. I feel like this hole in my chest is just as big as it was before and I can't understand why the world is continuing to rotate.  Somedays I want to scream at everyone. I want to yell at the top of my lungs, My daughter died!!!! I want the world to stop and cry with me to mourn that the most beautiful thing has left it. How can we be talking about "normal" things?! How can people not see that I am shattered? How can they not see that I am faking smiles and trying to not make them feel uncomfortable with my all consuming grief? How do I continue to live like this? Trying so hard to just get up, breathe and take care of Ruby and your Daddy.
My precious girl, oh how I miss you. I truly ache for you. I didn't realize it would be so all encompassing. I knew emotionally I would be broken but I physically long for you. I have panic attacks and cant get enough air. My arms are itching to touch you to feel your weight in them once again.  I miss you, so much. The void in our home is palpable and its not easing. I love you and I can not wait for the day to see you once again. You are my reason to fight, to find you and to be with you. Only then will I be truly whole again.
I love you

Love
mom

Wednesday, July 15, 2015

Monday, July 13, 2015

Dressing an angel and her funeral

I was so blessed to be asked to help with Eliza's hair in preparation for her funeral. Nikki asked me if I would trim her hair before they dressed her. I was so honored and touched and thought that I would just cut her hair and go but I was humbled when they asked me to stay and help style it as well. I was a little nervous about helping at all. I wasn't sure what kind of emotions it would drag up, and walking into the room where Eliza was I had to clamp my hand over my nose and mouth so that I wouldn't cry out and have loud and distracting sobs. The spirit in the room was overwhelming. Eliza looked like a true angel. She was stunning, truly she took my breath away. I don't think I will ever be able to describe dressing a child for burial. It is one of the most sacred experiences I have ever had. I trimmed her hair while Callahan painted her nails pompeii pink (now her toes match Lila's) after I was done I told them I would step out so they could dress her. I didn't want to impose on what is such a personal moment. After she was dressed and we had styled her hair I went and sat in the back and watched these amazing parents have their last moments before placing their child in her casket. I don't want to say too much, especially since it is not my moment to share, but it was beautiful and I know angels were with us. As I sat there I had the impression that Lila was sitting in the chair next to me. I physically felt her close, and I promise these moments are not that regular for me. As I thought of her next to me a sweet calmness came over me and relished in the moment not wanting it to end.
Eliza's funeral was extremely hard. Again it brought back so much, and I saw Quinn and I in Nikki and Callahan. They gave beautiful talks. They have always been my example in this crazy and hard journey of a sick and dying child. -I felt so inadequate as a friend. I wish I could help with the hurt to ease it in anyway and I know that I never will be able to.-  Nikki talked about her first years with Eliza and how she frantically searched for an answer, one day she had the thought come into her head, "Some things are not suppose to be fixed" it calmed her and gave her comfort as to what was ahead. I remember Nikki telling me the same story when I frantically searched for anything to prolong my daughters life and it comforted me then, but listening to it at the funeral took on a whole new meaning. I have been so grief stricken over Lila's death, the saying "some things are not suppose to be fixed" can be applied just as much today as it was in the early months of diagnosis. Lila and Eliza came for a purpose and they fulfilled it. They returned to heaven accomplishing what they were suppose to do. It is just so hard for the rest of us that now have to mourn their loss.

Sunday, July 12, 2015

Reunited

Our dear sweet friend Eliza returned to Heavenly Father this week. As with Lila we knew this day would come and yet it shocked us and broke our hearts. I am so happy that Eliza is free of the pain of MLD but I ache that her sweet spirit is no longer with us.
Nikki and Callahan were absolutely amazing to us when Lila was born. They took us under their wing and showed us that life was still beautiful after a terminal diagnosis. Nikki has helped me change g tubes, given me advice on strollers and medical equipment and helped me traverse the special needs world. But more importantly she gave me a listening ear of someone who truly understood all that I was going through. My heart is broken for them. It has been completely  humbling being on this side of the tragedy. I want so much to help ease the pain, to say or do something that will help and yet I know all too well that nothing I do will ever ease this intense ache.
My only comfort is to think of those two little girls reunited and giggling furiously.  The are skipping and twirling in beautiful perfect bodies and finally being able to have the conversations that they were always meant to have.
We love you so much Eliza.

our sweet Eliza


Eliza Kate Williams Obituary
Eliza Kate Williams, 10, returned to our Heavenly Father on July 8, 2015 in St. George, Utah. Eliza spent eight years battling with Metachromatic Leukodystrophy, a rare neurological disease.
Never was there a more determined, vivacious little girl than our Eliza. Her incredible spirit was trapped in a fragile frame with severe limitations. This did not keep her from enjoying life. Rather, she taught those around her how to enjoy every moment. She was the ultimate example of love, perseverance and courage. Her patience knew no bound as she was carefully cared for by all who knew her.
Eliza is blessed to have a large circle of friends and family who love her unconditionally. Without a word, Eliza could command the attention of any room. Her soft example reminded us of the love of Christ - pure and uninhibited.
Eliza is survived by her parents, Callahan and Nikki, her adoring sister Caroline, grandparents Lorrie and Merrill Norman and Lana and Steven Williams, great grandparents, aunts, uncles, cousins and friends. Thank you to our "village" that encouraged, supported and loved our angel. Until we meet again, Liza Lou.
Services will be held, July 15, 2015 at the Willowcreek Ward (2115 E. Sublette Pl, Sandy) at Noon. A viewing will be held, July 14, 2015 from 6 to 8 p.m. and Wednesday, July 15, 2015 from 10:30 to 11:30 a.m. Instead of flowers, please bring a children's book to be donated to Eliza's Library.

Saturday, July 11, 2015

Growing up


This little girl is growing up. Not a baby anymore 

Fourth of July


My cute little patriotic girl 


Giving cubbie hugs 


I love those piggies 


We picnicked up the canyon and went swimming with family. 
Fun fourth 













Of course we had to take the party to little miss