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
Monday, July 27, 2015
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.
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.
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, 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.
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
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
Random Ruby pics
Loves to our friend Mabel at the splash pad
Putting on sunscreen all by herself
All tuckered out
Everything is lipstick. Even markers....
Giving herself tickles
Kissing baby brother.
She loves the baby giraffe on the piano.
The zoo train
My little mimick
Always a dare devil.
Sunday, July 5, 2015
dear little man
Dear son,
I realized that by this time in pregnancy I was writing letters to your sisters and I haven't yet for you. You are twenty two weeks along and I am starting to feel more than just your flutters, there are some nice little kicks and jabs. A couple of days ago your dad felt a good kick for the first time. It made us so happy. We are so excited for your arrival. The first half of my pregnancy was flying by but now it seems to have slowed. October seems a long way off. Maybe its because I am getting bigger and its getting hotter!
I worry about you constantly and struggle to enjoy pregnancy. I did this with your sisters as well so don't feel bad. It also doesn't help that the doctors have thrown out comments like genetic syndrome. The fear of all that that entails just starts to overwhelm me. I am still deep in grief from losing your sister, and the thoughts of you not healthy are daunting. But what I have learned in this life so far my boy is that worrying gets you absolutely no where. It paralyzes you for the work that needs to be done. And so I am putting my faith in an all knowing God and hoping that whatever comes into your and my life is only for good and for purpose.
I have struggled with being pregnant again, and I fear that is why I have not been as diligent with tummy pictures and letters to you. I have been hurting with the thought of bringing another precious member of our family home when we are not all here. I have struggled with the fact that you will never be with your oldest sister on this Earth. I have been surprised by the amount of grief knowing that I will never have that "complete" family feeling. I mourn for you that you will not get to have some time with Lila. The grief is mixed with such excitement for you, it is an odd and strange road to travel. I know that you coming will heal some of that grief and I know it will create a new and fresh wound as well. What a journey we have before us.
Your older sis Ruby is excited for you. She kisses my tummy and gives loves to "baby brudder" I have such high hopes for the two of you. I pray that you will be each others best friends. Only twenty six months apart I hope that you will find in each other the kind of friendship that I found with my brother growing up. We were each others favorite person. I hope so very much that happens for you and Ruby.
Your dad and I are getting closer to your name. We have struggled with finding you a name. Its actually been kinda funny. All of your aunts and Uncles and grandparents have looked through baby lists and made suggestions. Its been a very long process. The girls names came so easily and I have tried so hard to find you a name that you will love and be proud of . I feel like since we are closer to your name you are becoming more real.
Your dad and I were talking that we are so use to unfortunate news in our lives that finding out that you were coming to us didn't seem real. We still are in shock that you are actually growing inside me. And a little boy as well! How foreign for us. What a fun and new adventure. I have been praying that I will be a good mom to a boy ( I hope I am being a good mom to a girl as well) . Your dad thinks I am over thinking it, but I have never been a mom to a boy. I really want to do a good job. I hope you will be proud to call me your mom someday.
Your dad and I talk about our thoughts on what your little personality will be and we know that there is no way to know what is coming our way. We never could have foreseen Lila or Ruby. We are so excited for you. You my sweet boy are a miracle. I want you to know that. I want you to really understand that you are coming to two parents who have begged and pleaded for you. I want you to understand - and I don't think you will until you have children of your own- what your little life means to us. What the birth of you after the death of your sister will mean to us. We love you already and we are so grateful for you. I can't wait to meet you my sweet baby.
love
mom
I realized that by this time in pregnancy I was writing letters to your sisters and I haven't yet for you. You are twenty two weeks along and I am starting to feel more than just your flutters, there are some nice little kicks and jabs. A couple of days ago your dad felt a good kick for the first time. It made us so happy. We are so excited for your arrival. The first half of my pregnancy was flying by but now it seems to have slowed. October seems a long way off. Maybe its because I am getting bigger and its getting hotter!
I worry about you constantly and struggle to enjoy pregnancy. I did this with your sisters as well so don't feel bad. It also doesn't help that the doctors have thrown out comments like genetic syndrome. The fear of all that that entails just starts to overwhelm me. I am still deep in grief from losing your sister, and the thoughts of you not healthy are daunting. But what I have learned in this life so far my boy is that worrying gets you absolutely no where. It paralyzes you for the work that needs to be done. And so I am putting my faith in an all knowing God and hoping that whatever comes into your and my life is only for good and for purpose.
I have struggled with being pregnant again, and I fear that is why I have not been as diligent with tummy pictures and letters to you. I have been hurting with the thought of bringing another precious member of our family home when we are not all here. I have struggled with the fact that you will never be with your oldest sister on this Earth. I have been surprised by the amount of grief knowing that I will never have that "complete" family feeling. I mourn for you that you will not get to have some time with Lila. The grief is mixed with such excitement for you, it is an odd and strange road to travel. I know that you coming will heal some of that grief and I know it will create a new and fresh wound as well. What a journey we have before us.
Your older sis Ruby is excited for you. She kisses my tummy and gives loves to "baby brudder" I have such high hopes for the two of you. I pray that you will be each others best friends. Only twenty six months apart I hope that you will find in each other the kind of friendship that I found with my brother growing up. We were each others favorite person. I hope so very much that happens for you and Ruby.
Your dad and I are getting closer to your name. We have struggled with finding you a name. Its actually been kinda funny. All of your aunts and Uncles and grandparents have looked through baby lists and made suggestions. Its been a very long process. The girls names came so easily and I have tried so hard to find you a name that you will love and be proud of . I feel like since we are closer to your name you are becoming more real.
Your dad and I were talking that we are so use to unfortunate news in our lives that finding out that you were coming to us didn't seem real. We still are in shock that you are actually growing inside me. And a little boy as well! How foreign for us. What a fun and new adventure. I have been praying that I will be a good mom to a boy ( I hope I am being a good mom to a girl as well) . Your dad thinks I am over thinking it, but I have never been a mom to a boy. I really want to do a good job. I hope you will be proud to call me your mom someday.
Your dad and I talk about our thoughts on what your little personality will be and we know that there is no way to know what is coming our way. We never could have foreseen Lila or Ruby. We are so excited for you. You my sweet boy are a miracle. I want you to know that. I want you to really understand that you are coming to two parents who have begged and pleaded for you. I want you to understand - and I don't think you will until you have children of your own- what your little life means to us. What the birth of you after the death of your sister will mean to us. We love you already and we are so grateful for you. I can't wait to meet you my sweet baby.
love
mom
Friday, July 3, 2015
Thursday, July 2, 2015
Lila's pool
One of the reasons we bought our home was because it had a pool in the backyard. Lila loved the pool so much, it was one of her great joys to float and get all that weight off her broken body. We thought it would be amazing to have a pool for her to have water therapy. I'm not sure I would've bought a home with a pool otherwise with having other little children running around but we thought that Lila would truly benefit from it. When she passed away quinn and I struggled with what we were going to do with the pool. Our first thought was to fill it in, but gradually we did nothing and it turned into a neglected and disgusting swamp. When Quinn's friends came and cleaned up our backyard it motivated me to get going on the neglected pool. Quinn and I finally decided to get some bids on what it would cost to clean up the pool. We decided to open it in lilas honor.
It was disgusting. Our year of neglect certainly showed. Professionals came and drained it, acid washed it and got it all ready to fill.
Heaven help our water bill.
Before it was all set up and chlorinated. Quinn threw cubbie in. She hated it! The panic in her eyes! She swam to the stairs and ran, I don't think I'll have to worry about a dog in my pool.
Finally swimming in the pool was very emotional. This was Lila's favorite activity, in the pool it was nice and warm and ready for her. We miss her so much and wish that she was with us every single day. (don't worry there is a safety cover on the pool when not in use for my little daredevil Ruby.)
Ruby is swimming for her sissy
Floating , I hope Lila is right there with us
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