For Mia & Stacey

Stacey, many of your SMA family have held a prayer and candlelight vigil.  Below are some of the stories, prayers and pictures as people are thinking of you and Mia.

• Prayers For Mia

• Stacey's Words

• Thoughts and Poetry for the Family

• Mia's Funeral Service

We held our Prayer service and candle lighting for Mia this evening.  We played Josh Groban's song "To Where you Are", and said prayers for her and all the SMA families.  We will keep praying.  Kristin and Mr. Cole

3 candles burning in Michigan --- Mia, Jarred and MJ ....we send our love and PRAYERS!  Suzanne and Erinne Rose

Mark 5:23-24, 40-42: Seeing Jesus, he fell to his feet and pleaded earnestly with Him, "My little daughter is dying. Please come and put Your Hands on her so that she will be healed and live." So Jesus went to where the child was and said to her, "Little girl, I say to you, get up!" Immediately, the girl stood up and walked around. 

********************

Mark 10: 14, 16: People were bringing little children to Jesus to have Him touch them, but the disciples rebuked them. When Jesus saw this, He was indignant. He said to them, "Let the little children come to Me, and do not hinder them, for the kingdom of God belongs to such as these.... And he took the children in His arms, put His hands upon them and blessed them."

May God hold you in his Healing Hands, Mia. We are lifting you up in prayer. We love you.

Brandi, Mitchell, Jensen, and Kameron

I had my own little prayer service at 8pm then Lily and I joined hands and prayed for our little friend Mia and her family.....my heart goes out to them as well as my prayers.  I will continue to pray and keep our candle's lit...I asked God to send his angels to be round about Mia and her family.  You guys are in my heart and prayers Stacey.....~Amy Barnett~

We have our candles lit in IL.  Prayers are being sent for Mia. Renee, Sam, and Sami

Candles burning in Kokomo, Indiana from Laura & Kaylee. I explained to Kaylee about Mia and what we were doing and why, and her prayer, on her own, was "Dear God, let Mia wake up and be okay."

Laura

Jimmy & I prayed along with my brother and future sis-in-law and my parents, for Mia's Miracle.  Everyone that I talked to today will be praying too.

We will be praying for Mia and Stacey tonight.  There is a special light glowing in Georgia for this very special little girl.  Our SMA Family may not be large but it is strong and united.  You are not alone!  What happens to one happens to all!  You are in our hearts and prayers.

Love,
Anne, Dana, Cassidy & Skylar

Mia Dylan and Stacey - we hold family night every Monday night where we sing, play games together and teach our kids about our religious beliefs (basic honesty, goodness, etc.)

Sending out many prayers for Mia from Tennessee.  Billy & Lisa Spiegel

Candles were and still are lit in Wilkes-Barre Pa. Mia~ You've have been on my mind all day. We are praying for your miracle to come tonight. We love you Mia!  Tracy & Skylar

We lit candles tonight at 7 pm and prayed. We are continuing to pray for a miracle for Sweet Mia. You are in our hearts Mia.  We are also praying for strength for Stacey and Dylan.  Love, Erica

We also lit a candle for Mia and she is in our Prayers. AMEN God Bless, Steve W.& Callie

My prayers are with you tonight. I was so saddened to hear about Mia. There are so many wonderful postings and beautiful messages and pictures...you are loved so much and I feel truly that God will hear all our prayers.  Cindy Henry, Granny to Kaelan,

We lit the candle and prayed for Mia at 5:00PM pacific time. The candle is still on (8:42PM), and we will keep praying for Mia and Stacy. Regards, Pingrong

Stacey, Mia and Dylan, You are all in our prayers here in So. California and will continue to be! We are praying very hard for a miracle!!  The Dodaro Family

pray and pray - definitely something I can and will do for Mia, Stacey and their family. Catherine, Mum to Jonathan

Our Prayers are with Mia and her family; Jennifer Eastham, mother of Courtney Canfield.

I just wanted you to know that I have been thinking of all of you and praying for all the sick kids. I am sending the picture of Devin with his candles for Mia. Love and prayers to everyone, The Arnold and Duncan families

Many prayers coming your way Mia and Stacy and Dylan.  Chelsey said a special prayer for you Mia.  We love you all.  God Bless everyone and keep them safe.  Stephanie Baker

Many prayers for you from Central Indiana. May God’s healing hand touch you.  Greg, Michaele, Noah & Grace Aldridge

Kalair's Candle for Mia

Mia, we're praying for you!

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• Stacey, I wish I had the right words to say but really there is nothing that can be said at this time..please know you are in my thoughts and prayers.  If you need someone to talk with or speak to please feel free to call me anytime day or night. Thinking of you, Amy Barnett

• Stacey, I am so very sorry.  I wish I could give you a big hug right now.  Heaven is now even more beautiful than I imaged with your beautiful baby girl there.  You and your family will continue to be in our prayers.   Lorraine

• Stacey, I am so sorry, Please know that we will continue to keep you and Dylan in our prayers that you find the strength to get through this difficult time.  Jim, Wanda and Samantha Dodaro

• Oh, Stacey, I am so sorry.  We have been praying for you, Dylan and your precious Mia all day long.  I am in shock.  I don't know what to say.  We will continue to pray for strength and peace.   God Bless Lisa and Ashley Hodges

• You are definitely in my prayers- if you need anything at all please let any of us know- we will do whatever we can. Kristal & Brett

• Stacey, Consider yourself hugged....long and comfortingly(is that a word) You need to know this group has been truly blessed to be a part of your and Mia's journey. I can only imagine the reunions your little precious one is experiencing on her arrival to heaven. I pray that you and Dylan  (and those who Mia touched in special ways) find abundant garce to endure the painful moments and abundant joy in the good memories and knowledge that Mia is with Jesus- who loves all the little children. He is our strength when we are weak. We are sorry that you have had to say goodbye to such a sweetheart so soon. She will be watching over you. Again- HUGS,hugs{HUGS}  WE love you,  Marcia and Steve

• Dear Stacey,  I am so sorry about Mia's passing, there are no words. We continue to pray for strength and grace for you and your family. God Bless.    Tine, Rex and Gilly

• Dear Stacey and Dylan, You are in my thoughts and prayers at this terribly difficult time and there are no words to express the pain I am feeling for you on the loss of beautiful Mia. It was a privilege to meet you and your wonderful daughter just a week and a half ago. Her smiling face will forever be etched in my mind. She may be gone from this earth, but never forgotten........ Love, ME-ME

• First let me say that my heart is just broken.  There are no other words to say to you Stacey and Dylan other than I am truly sorry.

  Stacey - I shared with you on phone this evening all the signs that I heard and felt today that made me feel that this truly was the day that Mia was needed to now go and do her work in Heaven.  I would like to share them with the rest of this chat family.

  1) Stacey called me this morning just as I was getting out of the shower...we talked about what the day ahead might hold and Stacey was wondering if it were today that she might think about donating some of Mia's organs...she specifically asked me about dear little Marshall Potter..and just as she was I realized that I had his t-shirt on.  Marshall doing his work.
  
  2) After talking with Stacie I went downstairs to quickly read the chat emails...I read the lovely lady bug story that Erica wrote about as she was writing the words Light candle for Mia on her calendar and the lady bug fell on her foot...well we all know that Peg Bailey came up with the candle idea and in case you didn't know - the lady bug has always been Peg's sign that her best bud Taylor is doing her work. 

  3) Stacey also told me that the little blankets under Mia at the hospital were covered with Lady bugs.

  4) Sue O'Neill called me this afternoon to let me know that she received a special card in the mail with Mia's favorite item on the front - a Butterfly.  In it had a special note and a beautiful picture of our special friend that left the earth today.  I told Sue that I also received the card and noted that it had a lady bug right under the butterfly.  I thought it was special that we both received this today since we did not get to meet precious Mia in person last week in DC.

  5) Lorraine called me and pointed out to me that we both put Mia's birthday card in front of our candles last night.  If you look at the page that Laura created you will see this.  Now please remember that Lorraine's son Jimmy, my son Connor and Mia were all born in March of last year.

  I hope these bring you peace knowing that this was the day she was called to Heaven.

  God Bless and with love,
  Karen

• Stacey,   I feel such a heaviness and ache in my heart for you. I cannot begin to understand your pain. I am so very, very sorry. I know you feel lucky to be her Mom, but she is also lucky to have a wonderful, loving Mom in YOU. I ask God to give you strength and comfort and peace. THANK YOU for allowing me to be a small part of Mia's life. I will treasure all of the pictures you have shared with us. I hope those that met Mia at the FSMA conference truly realize how blessed they were to have met her. You and Dylan are in my prayers. God Bless and we send our love and hugs,   Suzanne & Erinne

• Stacey, My heart is breaking for you with the lost of your precious little girl.  Please know all of us are thinking of you during this difficult time. Renee mom to Sami

• Stacey I have been thinking about you and your family all night. My words that I type, hopefully will offer some peace. My grandma lost a baby at 4 months (we suspect to sma also) and someone told her once "If you raise an angel for God, you are assured your place in heaven." My grandma lived her whole life on those words and at 91, was reunited with her angel. You will be with you beautiful little girl one day, where she is free from the awful SMA and running around you, her little piggy tails streaming with glowing ribbons. Please know that our whole SMA family has rallied behind you and your family. I have never seen such an outpour of love for a baby as was for Mia in the past 2 days. She truly is an angel. Kristin and Cole

• Dear Stacy, I really don't know what to say. I don't know any word can comfort you. I"m angry right now. This damn disease take so many angels away from us. We will light a candle again tonight for Mia. She was loved on earth, and she is loved in heaven.  Hugs to you and your families.  Pingrong

• Oh Stacey, my heart is breaking for you. I know where Mia is there is nothing but joy, but you and your son must be in shock. It is almost impossible for me to fathom that that beautiful little angel who I just met is no longer here, I know I can't even imagine how you must feel. I wish there was something I could say or do, but I know there is not. Just know that I feel blessed to have known your precious daughter, if only for a moment, and we are here if there is ever anything we can do... Love, Liz and Kalair

• Stacey,   My heart is breaking for you and Dylan.  I am so glad we were able to meet Mia at the conference, if only for a couple of minutes.  I wish there was something substantial I could do, but know that you and your family are in all of our family's prayers.  We pray for strength and comfort and peace for you and yours.  There is a beautiful song about a child that has passed too soon called Precious Child.  I thought it might speak to you right now.  You can listen to it at this link:  http://www.compassionatefriends.org/precious_child.htm
  
  Here are the words:
  

  PRECIOUS CHILD
  
  Words and Music by Karen Taylor-Good
  In my dreams, you are alive and well
  Precious child, precious child
  In my mind, I see you clear as a bell
  Precious child, precious child
  
  In my soul, there is a hole
  That can never be filled
  But in my heart, there is hope
  'Cause you are with me still
  
  In my heart, you live on
  Always there never gone
  Precious child, you left too soon
  Tho' it may be true that we're apart
  You will live forever... in my heart
  
  In my plans, I was the first to leave
  Precious child, precious child
  But in this world, I was left here to grieve
  Precious child, my precious child
  
  In my soul, there is a hole
  That can never be filled
  But in my heart there is hope
  And you are with me still
  
  In my heart you live on
  Always there, never gone
  Precious child, you left too soon,
  Tho' it may be true that we're apart
  You will live forever... in my heart
  
  God knows I want to hold you,
  See you, touch you
  And maybe there's a heaven
  And someday I will again
  Please know you are not forgotten until then
  
  In my heart you live on
  Always there never gone
  Precious child, you left too soon
  Tho' it may be true that we're apart
  You will live forever... in my heart

• Dear Stacey. I am so sorry for the pain that you must endure now.  How blessed you are to be Mia's Mom.  I love her very much from hearing so much about her from my mom Arlene following the conference. Even before we knew she was having trouble, I couldn't get her sweet face out of my mind, she is just so special.  What Kristin said is true about raising an angel for God.  You did that.  In looking at Mia's pictures again tonight, I again saw that she had a look of heaven in her eyes, very close to God while on earth.  Again, I will pray for strength for you and your family to get through this time.  She will remain in our hearts forever.  With our love and deepest sympathy, Erica, Arlene, & Lauren

• Stacey - I wish there was something I could say or do to ease what you and Dylan must be going through.  I never had the honor of meeting beautiful Angel Princess Mia in person, but seeing her through your pictures and hearing you talk about her, she truly touched my heart, as have you and Dylan.  You, Dylan, and Mia will FOREVER be in my thoughts.  I have kept Mia's card with the pin you sent us sitting on my desk since the day I received it ... and there it will remain as long as there is SMA.  She has made a truly beautiful addition to Heaven ... I can just imagine how happily she was greeted by all of the SMA Angels who have passed on before her.  No more limitations ... no more SMA ... only joy.  With all my love and deepest sympathy,  Brandi

• Stacey & Dylan, My prayers are with you during this difficult time. Mia was truly a precious angel.  Cindy

• My prayers are with Mia's beloved family. Stacey was obviously guided by God and Mia to make her incredibly difficult decision today. I believe that they guided her to do just the right thing at just the right time for precious Mia. I cannot believe that this has happened but I can only honor the  strength and grace with which Stacey has met this tragedy.  I will never forget Mia. Love, Sallie

• I can only voice what everyone here has already said....I'm so sorry about the loss of your beautiful angel, and I know my angel was waiting for her with open arms, and now they both run and play free from SMA....my thoughts are with you at this very difficult time....In deepest sympathy.... Pam

• Stacey, All night I've been thinking about how to express to you what I'm feeling about the passing of Mia. The right words still haven't come to my mind. Let me just say that you are a great Mommy. Dylan is an amazing kid. Mia is the sparklingest angel in heaven. We all care about you guys so much. Hugs to you guys from my family. Sue

• Stacey,  Please know that my thoughts are prayers are with you and Dylan during this most difficult time. I've done nothing but think of you and your family for days. I feel blessed to have known Mia through your words and pictures. She is a beautiful angel. Take care, Susan, Sal, Ashley and Leo Tortors

• I have tossed and turned all night thinking of the right words to say. But I cant. Stacey and Dylan, I am so sorry for your loss of Mia. I am glad I had the chance to meet her and let her be a part of our lives. She was blessed to have a great Mommy like you Stacey and a brother like Dylan. Our heart and prayers go out to you in this difficult time.  All our love with sympathy, Tracy and Skylar

• You and your family are in our thoughts and prayers. Laura Sierra' s mommy

• We never met Mia except through the photos on this list but we were struck with her sweet and joyful appearance. Stacey, we cannot but imagine the pain and numbness you must be going through now and all we can say is that our thoughts and prayers continue to be sent your way. We can rely on and trust that God will carry you and your loved ones through this difficult time. We are crying along with you. With greatest sympathy, Catherine and Jonathan

• Stacey I don't have the words to express how heavy my heart has been for your family the last few days.  When I lost my son Ryan I was devastated and I heard this poem.  It really helped to "lighten the load" and see me through the tough times.  I hope it will do the same for you.  Love Kim Fox

  Footprints
  
  One night a man had a dream.  He dreamed he was walking along the beach with the Lord.  Across the sky flashed scenes from his life. 
  For each scene, he noticed two sets of footprints in the sand; one belonging to him, and the other to the lord.
  
  When the last scene of his life flashed before him, he looked back at the footprints in the sand.  He noticed that many times along the path of his life there was only one set of footprints.  He also noticed that it happened at the very lowest and saddest times of his life.
  
  This really bothered him and he questioned the lord about it.  "Lord, you said that once I decided to follow you, you'd walk with me all the way.  But I have noticed that during the most troublesome times in my life, there is only one set of footprints.  I don't understand why when I needed you the most you would leave me."
  
  The Lord replied, "my precious, precious child, I love you and I would never leave you.  During your times of trial and suffering, when you see only one set of Footprints, it was then that I carried you."

• If Tomorrow Starts Without Me...

  If tomorrow starts without me,
  And I'm not there to see,
  If the sun should rise and find your eyes
  All filled with tears for me;
  I wish so much you wouldn't cry
  The way you did today,
  While thinking of the many things,
  We didn't get to say.
  I know how much you love me,
  As much as I love you,
  And each time that you think of me,
  I know you'll miss me too;
  But when tomorrow starts without me,
  Please try to understand,
  That an angel came and called my name,
  And took me by the hand,
  And said my place was ready,
  In heaven far above,
  And that I'd have to leave behind
  All those I dearly love.
  But as I turned to walk away,
  A tear fell from my eye
  For all my life, I'd always thought,
  I didn't want to die.
  I had so much to live for,
  So much left yet to do,
  It seemed almost impossible,
  
  That I was leaving you.
  I thought of all the yesterdays,
  The good ones and the bad,
  The thought of all the love we shared,
  And all the fun we had.
  If I could relive yesterday,
  Just even for a while,
  I'd say good-bye and kiss you
  And maybe see you smile.
  But then I fully realized,
  That this could never be,
  For emptiness and memories,
  Would take the place of me.
  And when I thought of worldly things,
  I might miss come tomorrow,
  I thought of you, and when I did,
  My heart was filled with sorrow.
  But when I walked through heaven's gates,
  I felt so much at home.
  When God looked down and smiled at me,
  
  From His great golden throne,
  He said, "This is eternity,
  And all I've promised you."
  Today your life on earth is past,
  But here life starts anew.
  I promise no tomorrow,
  But today will always last,
  And since each day's the same way
  There's no longing for the past.
  You have been so faithful,
  So trusting and so true.
  Though there were times
  You did some things
  You knew you shouldn't do.
  But you have been forgiven
  And now at last you're free.
  So won't you come and take my hand
  And share my life with me?
  So when tomorrow starts without me,
  Don't think we're far apart,
  For every time you think of me,
  I'm right here, in your heart.

• Stacey, me and Marcia just want to give you a (((((((((((((((((((((((((((((BIG HUG))))))))))))))))))))))))) and just say God Bless You. God Bless Steve W. Dad to Callie SMA2

• Thank you for sharing that Stacey. I will continue to pray for strength for you. My heart is aching when I think of what you must endure right now. What Kristin said stays in my mind about raising an angel for God. It takes a strong person and Mia chose you. I feel peace when I think of Mia, knowing that she is peacefully playing with the other angels, waiting to greet all of us one day. Thank you for the opportunity for my mom to meet Mia. She said if being next to her was not like being in the presence of an angel, I don't know what is. Mia has already touched so many people we know, as her angel work continues. She is in our hearts forever. With our love and our deepest sympathy, Erica & Lauren

• Stacy, I am so sorry to hear about Mia. I am in shock and can not find the words. All I can say is you and your family are in our thoughts and prayers. If you need anything please let me know. Beth 

• ((hug))) Stacey! You are an amazing person. I am so l glad I did get to meet your angel. You could tell she was SO loved by a person as dedicated as you are. We are still praying for you all.  Lots of love and hugs, Tracy and Skylar

• Dear Stacy, I can't help my tears when I read your letter. Mia's beautiful face is shining on me. I can feel your pain and anger. I want to hug you and cry with you. This damn disease. We will pray for you and your family, pray for all the SMA kids, pray that we find a curer. Regards, Pingrong

• We have no words except love and prayers sent your way. God Bless you and Dylan!!! Love, Christy, Kenny, Laura, and Sara Rose Greene

• Stacey, Dylan, Haq, and family, We are thinking about you today. I don't know what else to say. I wish you peace and wonderful memories. Sue

• We released our first butterfly for Mia today, We named the butterfly Mia and then Sam and I took her outside and she sat on our hand for the longest time then spread her wings and flew like she was on a mission, then Samantha and I said a prayer for Mia's family. Stacey you will be in our thoughts all day today, may god give you the strength to get through this day. Love, Wanda and Samantha Dodaro

• Stacey, I am with you in spirit today...I know it is a hard day and you certainly have my prayers.  (((((((((((HUGS)))))))))))) to you, I wish I was there with you.  My heart is with you.... Amy Barnett

• God's Child and Yours
  
  "I'll lend you for a little time, a Child of Mine," He said,
  "For you to love while he lives, and mourn for when he is dead.
  It may be six or seven years, or twenty-two or three,
  But will you, till I call him back, take care of him for me?
  
  He'll bring his charms to gladden you, and should his stay be brief, You'll have his lovely memories as solace for your grief.
  I cannot promise he will stay, since all from Earth return,
  But there are lessons taught down there I want this child to learn.
  
  I've looked this wide world over in search of teachers true.
  And from the throngs that crowd Life's lane, I have decided you.
  Now, will you give him all your love nor think the labor vain,
  Nor hate Me when I come to call to take him back again?"
  
  I fancy that I heard them say, "Dear Lord, Thy will be done.
  For all the joy this child shall bring, the risk of grief we'll run.
  We'll shelter him with tenderness, we'll love him while we may,
  And for the happiness we've known, forever grateful stay."
  
  And should the angels call for him much sooner than we planned,
  We'll brave the bitter grief that came, and try to understand."

• Oh Stacey, I have been thinking about you all day, trying to bring some profound words to mind to ease your pain and help you through this day, but nothing sounds right. Please know that my thoughts are there with you and Dylan and Haq and especially with Mia, as her all-to-brief life is celebrated this afternoon. Love, ME-ME

• Mr. Cole and I had a memorial for Angel Mia today.  We sent a prayer and a purple balloon up to heaven for her.  I stood out on the deck and sang songs for her and watched until I couldn't see her balloon anymore.  "Dear little Mia, Please watch over Mr. Cole and all the other SMA babies here on earth.  Please use your beautiful golden wings and wrap love all around them, until it is time for them to come and play with you."  Baby Cole and Mommy

  

• I Asked The Lord To Bless You

  
  By Martha White ©1996
  
  I asked the Lord to bless you
  As I prayed for you today
  To guide you and protect you
  As you go along your way....
  His love is always with you
  His promises are true,
  And when we give Him all our cares
  You know He will see us through
  So when the road you're traveling on
  Seems difficult at best   
  Just remember I'm here praying
  And God will do the rest.

• I would give anything to be there in person with Stacey and Dylan today ... but they have been in my thoughts, prayers, and heart full-time for almost a week now, especially today.   Yesterday I was listening to the radio and a song came on that reminded me of Stacey, Dylan, and Mia.  For the life of me, I just couldn't remember it all morning and then about 4:00 it hit me!  So I will post the words below ...

  I wouldn't change a single thing about you if I could
  The way you are just suits me to a tee
  A Princess in a story book, a King upon his throne
  That's what we are and you belong to me
  
  I wouldn't change you if I could I love you as you are
  You're all that I would wish for if I wished upon a star
  An angel sent from heaven you're everything that's good
  You're perfect just the way you are
  I wouldn't change you if I could
  
  Your eyes, your lips, your tender smile - I'd leave them as they are
  And come what may I'd never change a thing
  And if I were a potter and you a piece of clay
  The only thing I'd change would be your name

• Deep peace I breathe into you
  Oh weariness here, O ache, here!
  Deep peace, a soft white dove to you;
  Deep peace, a quiet rain to you;
  Deep peace, an ebbing wave to you!
  Deep peace, red wind of the east from you;
  Deep peace, gray wind of the west to you;
  Deep peace, dark wind of the north from you;
  Deep peace, blue wind of the south to you!
  Deep peace, pure red of the flame to you;
  Deep peace, pure white of the moon to you;
  Deep peace, pure green of the grass to you;
  Deep peace, pure brown of the living earth to you;
  Deep peace, pure gray of the dew to you;
  Deep peace, pure blue of the sky to you!
  Deep peace of the running wave to you,
  Deep peace of the flowing air to you,
  Deep peace of the quiet Earth to you,
  Deep peace of the sleeping stones to you,
  Deep peace of the yellow shepherd to you,
  Deep peace of the wandering shepherdess to you,
  Deep peace of the Flock of Stars to You.
  Deep Peace of the Son of Peace to You.
  Deep peace, Deep Peace.
  - Old Irish Blessing of Peace

• Saying Goodbye
  by Brenda Penepent

  Go now, my child, the time has come.
  All tasks today are done.
  There are others waiting there for you,
  And songs yet to be sung.
  Go quietly, go softly,
  Leave all pain and fear behind.
  Today has left a part of you
  In our hearts, our souls, and minds.
  I’ll remember you, my dear one,
  As I lay down to sleep.
  I’ll remember that you made me smile,
  Although, it makes me weep.
  As you go to face your future,
  As you go to touch the sky
  Know that God makes all things possible,
  Angels never die.
  Go now, my child, the time has come.
  All worldly tasks are done.
  There are others waiting there for you,
  And songs yet to be sung.

• The Angelic Butterfly
  by Cathy Ann Wierman

  I’ve found safety in my cocoon for many
  years, sheltered from the hurts life threw
  my way. I’ve been growing, one day at a
  time, to become the beautiful, angelic
  creature I’m meant to be within the haven of
  the cocoon. Then one day, with lots of hard
  work and determination, the cocoon cracked,
  and the Angelic Butterfly emerged stronger
  than ever before. As her wings slowly
  unfurl, so many dreams, long forgotten, are
  beginning to be realized. As the feelings
  are felt, the wings are fully expanding to
  reveal their true beauty. As the butterfly
  begins to soar to new heights once thought
  impossible. With the help of God, and her
  angels, the only way for this butterfly to
  go (as all butterflies go) is up, up up!
  Look out world, the Angelic Butterfly has arrived!

• The Bagavad Gita speaks beautifully of the immortality of the soul.  

  Never the spirit was born; the spirit shall cease to be never;  
  Never was time it was not; End and Beginning are dreams!  
  Birthless and deathless and changeless remaineth the spirit forever;  
  Death hath not touched it at all, dead though the house of it seems.

  I will never forget Mia

• "Death is nothing at all...I have only slipped away into the next room....
  
  I am I, and you are you. Whatever we were to each other, that we are still. Call me by my old familiar name; speak to me in the easy way which you always used. Put no difference into your tone; wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. 
  
  Play, smile, think of me - pray for me. Let my name be ever the household word that it always was. Let it be spoken without effort, without the ghost of a shadow on it. 
  
  Life means all that it ever meant. It is the same as it ever was; there is absolutely unbroken continuity...Why should I be out of mind because I am out of sight? I am but waiting for you, for an interval, somewhere very near, just around the corner. All is well"

• Sometimes it seems like the world
  is crumbling around us
  and we just can't go on.
  But those are the times when
  we most need to look to the future,
  to hold on to our faith and hope
  and to each other.

  One of the hardest things to accept
  is the realization that
  things that make no sense
  to us now
  may never make any sense,
  but life will go on anyway-
  with no explanations or apologies,
  and that we somehow survive
  the changes thrust upon us.

  We even manage to grow...
  but nothing grows without rain,
  so when it begins to pour,
  let it flow.

  And when the storm has passed,
  let it go.  
  Be kind to yourself;
  ask for what you need.
  You are not alone.

• Grief is the darkness of a broken life.
  Grief crushes like a deadly avalanche.
  Grief is a story sea that throws the heart
  into the depth of pain, the center of despair.
  
  But we are given tender remedies:
  Remembrance of a golden joy embraced,
  Rich feeling left from moments in the sun.
  
  If we but reach for these:
  they wait beyond the dark to give us hope,
  to let us live again, to let us celebrate
  the children gone from earth,  yet always here
  eternal light of memory and love.

  Sascha

• I
  stand
  upon the
  seashore.  A
  ship spreads her white
  sails to the morning breeze
  and heads out across the blue ocean.
  She is an object of beauty and strength,
  and I stand and watch her until at length
  she hangs like a speck of white cloud on the horizon
  just where the sea and sky meet to mingle with each other.
  At my side, someone says:
  "There, she's gone."
  Gone
  Where?
  Gone from my sight, that is all.
  She is just as large in mast and spar and hull as when she sailed close by, and
  just as able to bear her load of living freight to the place of destination.
  Her diminished size is in my eyes alone.  At the moment
  when someone says, "There, she is gone," other eyes
  watch her coming, and other voices take up
  the glad shout, "Here she comes!"
  And that is dying.

• My Mom Is A Survivor
  by Kaye Des'Ormeaux.

  My Mom is a survivor, or so I've heard it said.
  But I hear her crying at night when all others are in bed.
  I watch her lay awake at night and go to hold her hand.
  She doesn't know I'm with her to help her understand.
  But like the sands on the beach that never wash away...
  I watch over my surviving mom, who thinks of me each day.
  She wears a smile for others...a smile of disguise.
  But through Heaven's door I see tears flowing from her eyes.
  My mom tries to cope with death to keep my memory alive.
  But anyone who knows her knows it is her way to survive.
  As I watch over my surviving mom...through Heaven's open door.
  I try to tell her that angels protect me forever more.
  But I know that doesn't help her or ease the burden she bears.
  So if you get a chance, go visit her...And show her that you care.
  For no matter what she says...no matter what she feels.
  My surviving mom has a broken heart that time won't ever heal~!

• A DAY, A WEEK, A LIFETIME
  
  When I wake up in the morning
  I ask myself
  How will I get through this day
  Without You
  
  As I dress and prepare to start my day
  I wonder
  How will I go on
  Without You
  
  As the day slowly slips away
  I remember how you made me laugh
  And I smile
  Without You
  
  At the end of the day
  As I prepare to close my eyes
  I know in my HEART
  I couldn't have gotten through the day
  WITHOUT YOU
  
  Author Unknown

• Do not stand at my grave and weep,
  I am not there, I do not sleep,
  I am a thousand winds that blow,
  I am the diamond glints on snow,
  I am the sunlight on ripened grain,
  I am the gentle autumn rain.
  When you awaken in the morning's hush,
  I am the swift uplifting rush
  Of quiet birds in circled flight,
  I am the soft stars that shine at night.
  Do not stand at my grave and cry,
  I am not there, I did not die.
  Mary Frye (1932)

• For Mia

  As I sit here by the ocean
  with my daughter by my side
  and I watch the many people
  greet the incoming tide
  I can't help but feel sorrow
  echo through the gales of laughter
  as I feel the lives of those we love
  slip away from us - faster and faster
  Strangers now among us,
  those who do not understand
  as they run and swim and fish
  and build their castles in the sand
  I'm sure they've suffered loss
  felt their hearts just burst with sadness
  but how can they ignore our pain,
  our souls as we deal with all this madness?
  I cry, I sigh, I grasp the hand
  of the daughter that I love
  I caress her little fingers
  as soft as the coo of the morning dove
  She looks up to the Heavens
  and smiles brightly at the sky
  as the many hungry seagulls
  fly about and cry
  Then her glance turns towards the ocean
  and I hear the crashing of the waves
  and I'm hit with such a peace
  which shakes my Spirit as it saves
  my sanity, my heart, my soul for another day
  and I can again watch all the people
  as they run and sing and play
  For once again my child has taught me
  that through Pain we can find Joy
  and Peace and Love and Spirit
  even when they may seem coy
  Because although I hear the laughter
  of children as the ocean waves roll along
  it's Nature's Chorus I now hear clearly
  singing Mia's song...

  KAM 7/03

   

Mia's Funeral Services and Pictures

Hi everyone....I wanted to thank everyone again for the wonderful cards and poems and prayers that you have all sent. You have been helping me every step of the way. thank you from the bottom of my heart. I wanted to share some of the things we did to honor Mia on Saturday and I wanted to share some pictures as well but I didn't want anyone to feel they "had" to look if it made them uncomfortable so I have sent this letter and the pics to Laura to put up on Mia's page. I feel the pictures are beautiful and I know many of you wanted to be there and I wanted to share the day with you.  There were many signs that Mia has been helping me make decisions the whole way through, Everything fell right into place for a reason. I had decided I did not want her shown in a casket and so we  had to buy a bassinet or crib because she had always slept with me (I have a king sized bed) well the store we thought had them did not and it was a mad rush to find a store before it closed Thursday night to purchase a bassinet. Well at 845 pm we walked into another store and the first bassinet I saw was the one. Butterflies and all. I had originally planned to have her shown in her favorite cotton dress but looked at the store for an undershirt when the first thing I picked up was THE dress, her size and perfect for her, so I reasoned my baby wanted a new pretty dress and so I got it and the bassinet. The next thing was the flowers......they fell in place perfectly for what I wanted and at the florist was a 15 month old boy toddling all over, I felt peace. The only flower I wanted that we could not find was Jasmine, for her name. Well Thursday night we called the local nursery and asked and they said they had just gotten 4 in that were beautiful and  going fast, we rushed in and found 2 left, not in bloom but beautiful nonetheless. We bought them. Saturday morning the day of her service we woke up to clumps of Jasmine that had bloomed through the night. They smelled heavenly. I snipped them all and there are even more now as well. We scheduled the viewing to be from 4-6 and services at 6. At 3:30 I came in and they had her dressed already and had saved her piggy tales for me to do. I did her piggy tales and put fresh Jasmine blossoms in each piggytale. I put her ceramic plumeria anklet on her that we had bought in Hawaii. I put her sandles on (I even had sent in my little girl's first pair of panties to wear! :) I didn't cry and I talked and sang to her the whole time and kissed and loved her. I felt she was on my shoulder and we were dressing a dolly together. She looked beautiful beyond words. We came out to the chapel where her bassinet was placed and the bassinet had a little area under it to hold things, I filled it with her favorite toys, books, movies, dollies, anything she loved. It was placed in front of  and between the beautiful arrangements of various shades of purple flowers the florists did to look exactly how I requested them, I wanted them to look like they were right out of a wildflower garden, cascading softly around her. There was heather and lavender and jasmine scent all over. I placed 8 framed 8x10 pictures of her on the shelves behind her bassinet as well as several large butterflies. I had one large mylar butterfly balloon and several purple and pink balloons tied to her bassinet. Haq's company had sent 2 enormous, enormous arrangements on either side of the room they were beautiful, there must have been 4 dozen red and pink roses a piece. Breathtaking. My sister had put together a giant display board collage of pictures of Mia and on either side was "meet my SMA family"  with pictures of your children and printed out prayers you have all sent. (I hope that's ok with all of you I did that) I included Kristen's quote "it's not how deep the sea....." and Sue's quote "while we try to teach our children...." It was beautiful and I am going the have the whole display board framed. It was beautiful. They wheeled Mia out on the table and I asked to place her in the bassinet and before I did I sprinkled these little butterfly cutouts in the bassinet and placed her in it on her favorite pillow and blanket and rested the special bouquet of heather, lavender, daisy, and jasmin in her right arm and placed a jasmin blossom in her left. I had celtic harp music playing in the background (I hate funeral music) and my sister got up and spoke and 2 of my good friends spoke and I spoke. Everything that needed to be said was said in such a beautiful way, Mia was honored in the most perfect way. I have the service audio recorded and I would love to share it if anyone wants a copy, the things said were perfect and I would be willing to share that with you if you like. I told of our love for her and shared a song and memory of dancing with her to Tiny Dancer by Elton John and at the end of the service they played that song and we all took a moment. Our despised "counterpart" SMA was there and we spoke of the disease frequently and persistently. We took donations for SMA support as well and I wanted to inform everyone that we donated Mia's spinal cord directly to SMA research. She was here to teach. As people left we sent bubbles with them tied with purple and blue bows to send joyous thoughts and bubbles up to my little ballerina dancing in the sand........We all went in privately for a minute to say goodbye and Then I requested a moment alone with her and for them to play the song and close the door. I picked her up and help her and had my final dance with her with beautiful balloons and the most heavenly flowers and we spun and swirled and I sang and I wouldn't trade that moment for anything in the world. We left her there in her bassinet as they were not able to cremate her until today which happened for a reason as well because if we would have done it Saturday I wasn't going to witness it, Haq was. But somehow between then and now I found the strength to witness it and so I was there and I'm glad I was. We kissed her and cuddled her and sent her of with flowers in hand and jasmin in her piggies. I found a perfect music box that is purple and has a little girl with butterfly wings leaning over smelling lilac (my favorite flower in the world) and her ashes will be placed in it and sealed with a sprig of lavender and jasmine, the song to be unheard again until we scatter her in Hawaii someday in the future. We went back to Haq's house with some friends and family (Kenya, Richard, and Aschdon have been here through it all and we had an awesome time with the kids, Dylan loves Aschdon.) and had some food and a cake I had done with her picture on it with 4 butterflies flitting on each corner, it was exquisite, I placed 15 candles (one for each month and one more to grow on and we watched them burn and listened to Tiny Dancer again and had Dylan blow the candles out. I just know she was jumping up and down squealing with glee....clapping with a HUGE smile on her face for her beautiful party. So many things happened that comforted me through it and I haven't felt alone once, she is right here with me, I have no doubts and know I could not live if she wasn't. I have so many wonderful signs. A ladybug in the car 2 streets before we get to the funeral home saturday, all the butterflies, the jasmin, the bassinet, the dress, the music, I had forgotten to get the keychain picture thing from the conference, Brenda and MJ mailed it June 25 unbeknownst to me and it got here Saturday. I have got a beautiful picture of her and I in that. Marshall Potter's family....thank you your gift meant the world to me. They had a star named for Mia Jasmin Haq on July 1, 2003, I received that today. I felt so much joy from it. All of the beautiful cards and poems and prayers, everything has helped us walk this path without so many tears and more in awe of how much Mia touched lives and why she was here, that her work will continue forever, and how much you all loved her. How loved she is. I believe we are born and the day we leave is etched in stone, there are no accidents, there are no surprises. Mia's work here was done and that little girl demanded that we live, we live each and every day to it's fullest. She didn't want her mommy wasting her time with nonsense and that's why there are no regrets, she demanded we squeeze every drop of living out of each day and spend all of our time together and love each other with all we have. I love my daughter beyond words, but you know, how can I be sad when she has bestowed a lifetime of precious joyous memories upon us? I love you all and I am not gone, I am still here and I love to hear about my daughter and talk about her so you will not lose me here. You are all my family and we love you and your children greatly. And make no mistake, Mia is with you as well.
we love you all.

Click one time on the photo to see a larger version:

Mia at the hospital and letting go.......

the board, her butterfly, her music box, her programs, her bubbles......

Mia's big celebration of her life.....

Mia's cake......

our beautiful angel......

her program....

her music box, sorry it's blurry

her Jasmine...

Happy Memory in Hawaii

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