6 months

It's been 6 months since our sweet Maddie Grace went to Heaven.

Dear Maddie Grace,

How I long to see your sweet little face.
Six months have gone by...
And I am not going to lie
Our hearts are still in so much pain
For life without you is such a big change.
Missing and coping for you in the only way I know
My sweet Maddie Grace, I love you so.

Time is flying by

On April 30th it will be 6 months since Maddie Grace left this worldly earth of ours. I still find her death so surreal and am still often in tears. I think about all the good and sad times. I think about her taking her last breathe and beating her last heart beat on the Tuesday afternoon of October 30th. It was so final. I struggle with finding inner peace to all of the sorrow that my husband and our two other girls are going through without Maddie. I remember during her time in the medically induced coma that the neurologist had stated that 20% of patients won't pull through. My heart fell to the ground and I could not even stand up straight knowing that this might have been a possibility. I didn't know how I would survive without Maddie. Yes, it's been almost 6 months and yes, I am breathing, eating and sleeping and living life....however surviving without Maddie. Tears and heartaches are part of our every day life. My oldest girl broke down in tears at school because she missed her sister so much. It broke my heart that she is so young to have known this kind of excruciating loss. They were only 19 months apart and as close as two sisters could ever be. I know Maddie has shaped Marissa into the little young lady she is today. My life is more slow paced and filled with lots of alone times which I often prefer. I view some things so differently and don't seem to be in rush to go out and do everything! My faith is unwavering but I still wonder why her? Why us?

3 months

It's been 3 months since our sweet Madeline went to Heaven, 3 months since we last kissed on her, 3 months since we said goodbye and held her as she took her last breathes and her little heart stopped beating. 3 months seems so far away at times while at other times it's just like yesterday. Not a moment goes by when I don't think of her. Maddie was always so full of love, smiles and hugs. I remember how she would light up with her signature smile as she listened and rocked to her favorite music. I remember how happy she would get to hear my voice as I came home from running an errand. We would greet with hugs and lots of kisses. Life is sure not the same without her beautiful presence in our lives. As our lives go on, I still find it hard to not have our girl with us. I am overcome with longing and sadness as tears flow like a river while listening to her song. I miss you so much, Maddie, my love!

Coping

It's been over 2 & 1/2 months since Maddie Grace went to Heaven...at times I find myself crying more than ever and other times life is somewhat the "new" norm. You don't get over losing anyone in particular your child. I think it's the worst tragic pain possible because losing a child is so out of the norm. Children shouldn't die in the natural scheme of life before their parents. How does one cope and deal with this since the loss of a beautiful child? A piece of you is gone with the child along with your hopes and dreams of your child and of her future. Even though Maddie was special needs we had so much hope for her to excel at all that she was capable of doing...I was so excited to start our homeschooling program where she was doing so well the month of August. I am finding all kinds of materials and ideas that I had made, planned, and were going to try with her...it hurts that I won't be able to use these materials on her...it hurts so deeply not to see her big and contagious smiles. Maddie Moo Moo was nonverbal but she sure said a lot. I miss her tremendously and more than ever. We are living each day to day in our new normalcy but something is still out of place or missing. I'm not sure when this sense of longing or lose will ease up..only time will tell. Time...another word that I wish I could use to turn back the clock to when we had our girl with us. ..when she was so full of health and life. I am thankful for the 7 wonderful and blessed years that God had given her to us but the longing and ache that I feel for Maddie Grace is still ever so strong and constant. I think as parents we want to be able to protect our children, to nurture them and to be able to raise them to the fullest. All of this was out of our hand so it feels like something is wrong or misplace/out of place. Our family dynamic has changed to where before we had our three beautiful girls now just the oldest and the youngest, which we are so grateful for. I know God definitely gave us Elyssa to help us with our sorrow. Maddie and Elyssa were 6 years apart. Elyssa’s demanding personality makes us cater to her needs and not our own. She is so sweet at times and constantly says, “Mad, Mad”. (Elyssa’s nickname for Maddie. ) Marissa is also such a blessing. God planned her birth order accordingly because she was like a second mommy to Maddie. She helped Maddie and us in so many ways. Marissa is also one of the most compassionate girl that I know. We are so blessed for one another and our health. Our life will never ever be the same again but we have fond and loving memories of Madeline that we will cherish forever. The picture of our beautiful three was taken last February. Oh…my heartaches for the three of them together like this always.

Just another day

Today's was a strange day, I woke up to no coffee. I looked at the coffee maker and wondered why it was turned on...hmmmmh maybe it was because I forgot to set the timer on, I turned it on, still no coffee. I looked at it again thinking we really need to get a new coffee maker. I turn it on again and it quickly turns off. Urghhh..I growled..getting  really frustrated. Chris comes downstairs and I tell him that the coffee maker might be broken. The on light tends to go out lately so we have to play with it some. Immediately to my dismay, my hubby shows me where I had forgotten to put in the coffee and water...hahah!  So I finally got my coffee and could function for the day. It was a day of relaxing and cuddling with Elyssa with the other free time cleaning up after the messy and busy toddler and some time pinning on Pinterest. Does anyone know of any other toddlers who has to get out so many bowls and cups all day? And on top of that she is now tall enough on tiptoes to get her cold water out of the frig on her own. Let me tell you, she loves to transfer water from cup to cup or to bowls and we have water spills everywhere. I get tired of the mess but am so blessed that she is able to do all of these typical toddler things...Maddie was not able to do any of these things but was so sweet and special in her own way. Elyssa turned on my IPhone music by accident this evening and Maddie's Favorite song Somewhere over the Rainbow came on. It brought tears and longing to my heart and eyes. She will always be such a part of our lives. I feel that she needs to be here to enjoy and not miss out on all the things Elyssa and our family are doing. After two months...life still feels so strange, different and not right or out of place without our Maddie Grace.

Keeping the faith

My heart is overwhelmed with sorrow as death or illness is all around me. A friend loss her sweet nephew on Christmas Day and a visitation was held yesterday, others from church with loss of fathers or sons, and other friend's of friends whom have also lost their child. And so many battling illnesses including our wonderful preacher whom had a surgery late last week to remove a tumor from his brain and is now in a hospice house because the prognosis is not much different than the chemo or radiation path. I keep all of these previous souls and their family in my thoughts as I am filled with my own grief of the lost of my sweet Maddie. I know in life there is life and death but it seems like lately there's is just so many. Please Lord be with all of the ones that are so deep in my thoughts and hearts and please provide comfort to all of the loved ones that are caring for them or that are left behind including myself and my family. In your Son's Name. Amen.

Not a moment goes by that I don't think of my sweet daughter...even when I don't...her pictures on the screen savers will pop up. Oh, how my heart longs for Maddie but I know holding and kissing her physically can't happen right now...at this time. My other girls keep me busy as we are enjoying Marissa's last day of Winter Break today. I've also tried to keep myself busy with reading and pinning cool things on Pinterest. Life is hard when there's so much pain and suffering around me, I have to keep my faith strong and remember others such as Job who suffered so much. I also recall one of my favorite hymnals, "It is well with my soul." God is in command and will provide me with everything that I need including comfort. My desire is always to please him, our Heavenly Father. Hoping to have a very blessed year this New Year 2013.

Sent from my iPad

Blessings

This was our very first New Year since Maddie’s birth that Maddie was not with us to celebrate the incoming “New” year. We celebrate her through beautiful memories that we will cherish until we take our last breathe. Not a day or hour goes by that we don’t have a thought of our Sweet Girl.  Maddie Grace lives in our hearts forever.  Time is slowly healing the pain and however, we are still hurt and so very devastated by the lost of our beautiful beloved child but know that she is in a much better place. God is in control of all and we are so blessed by our faith, the health of the four of us and growing closer as a family through all of the heartaches and tragedy of last year. We are thankful and grateful for Chris’ job so that we were able to celebrate Christmas, take a much needed vacation to California and try to have some fun and make new memories. We are so blessed by our local church congregation for all the love, support, encouragements, and prayers. We are so so deeply blessed by our family and friends from afar…no matter the distance we can feel all of your love. This 2013 New Year, we are hoping that everyone will have joy, health and much peace in 2013. We are also so mindful of so many needs and are keeping all of our friends and loved ones in our thoughts and prayers as those we care about are going through health concerns and tragedies. God bless each one of you.

 

A Day for Crying

Today was an extremely hard day, watching videos of Maddie and crying my heart out while waiting for Chris to finishing grocery shopping. Elyssa was sleeping in the car so I stayed in the car with her and looked through my phone's videos and pictures. In one of the videos, you can hear Maddie's sweet little murmurs. Oh, I miss her voice, her squeals...everything about her. Chris wanted to know what I wanted for Christmas and I really don't want anything. I thought time would help heal the heartaches but it seems some moments are so much harder than others. It's strange still not having her with us. Marissa said last night that sometime she thinks Maddie's spirit is with her and they watch movies and sleep together. There are so many families that have lost their children this year...too many....too much sadden and death. It breaks my heart each time I hear about another child's death. I look at the sky a lot dreamily and wishfully that I could get a glimpse of my sweet girl. How do I go on? It feels like I should have already be better...but when?

Some answers

We are getting closer to finding an answer to Maddie's disorder. We received a phone call last night from Dr. C about Maddie's GeneDX results that was taken back in mid-September. They did find a mutation in one of her genes that may potentially be the cause of her epileptic encephalopathy, cognitive impairments and developmental delays. Both neurologists, Drs C & T stated that Maddie fit the clinical features of the gene mutation per what they know and what they have read on this particular gene. The gene PCDH19 (protocadherin 19) is on the X chromosome Xq22.1 and researchers have linked in with EFMR (epileptic female-restricted with mental retardation) in women also known as EIEE9 (epileptic encephalopathy early infantile type 9). They are not sure if this is the cause of her condition or if there is another underlying cause but her tests results showed that there is a mutation on this gene. The gene has a wide spectrum in females and Maddie may have had the more severe type. The Gene can be inherited from either the mother or father but can also just happen on its own. It was discovered in 2008 and not much literature is out there only that it affects females and is very rare. More information can be found at the following link:
http://www.nhs.uk/news/2008/05May/Pages/Genemutationinrareformofepilepsy.aspx and http://ghr.nlm.nih.gov/gene/PCDH19 . Chris and I will possibly be working with a geneticist to see if one of us is a carrier and if this will be something that may happen again in future generations to come. No matter what our sweet girl had we would given anything to have her not suffer the seizures and other disabilities that limited her life so much here on earth. We miss her so much and not a moment goes by that we don't wish to have our girl to hug, kiss and love on...however she and all of us are part of a bigger plan of God's.

Reflections and Pictures

As the year 2012 is slowly wrapping up, I reflect on the hardest and most horrible times of my life this 2012 year as Maddie dealt with seizures and feeding tube issues and was in and out of the hospitals too many times to mention again and where she finally succumbed to seizures on October 30, 2012 in a Hospice house. We are devastated not to have our sweet girl around anymore. Every day we grieve and wished that she was still with us as happy and healthy as can be. I can also say that our family’s tragedy also taught me a lot about people in our lives. I am truly blessed for all of my caring and endearing friends and family members including Laura, Darla, Robin, Arlene, Stacy, Lyn, Holly, and countless others that were always there for my family and me even though they had such busy lives themselves. God showered us with so much support that the ones that did not react to our situation at the time caused us some hurt but God reminded us of his constant presence to help us get through many hard days by all of those other wonderful people that truly love and care for us. I am so grateful for my friends and family and the love that they have for all of us.  Today, I went back to the Ryan House to pick up our last family pictures taken by Sweet Child of Mine (nonprofit organization that donates their time and talent to family with children in hospice). These were some of the last pictures of Maddie and of us as the 5 of us. We are so blessed to have had those pictures taken just 2 days before she passed away. We will treasure these pictures and the memories of our beautiful daughter.  Her death certificate also came in and which I picked up along with her clothes from the mortuary this afternoon. It doesn’t seem real…but yet it is.  I am in tears over my daughter’s death and I’m not sure when I won’t get choked up or teary-eyed, I just know that I will be true to God and myself and honor my sweet and loving daughter, Maddie.

We were blessed

The horrific tragedy that killed all those children and staff at the elementary school in Connecticut on Friday really tore at my heart. I cried for those innocent lives and for the parents, families and friends of loved ones that learned of their death in the most horrible ways. I cried again seeing those beautiful faces so full of live and so much to live for. I cried for my own child, whom died 6 weeks before...knowing that she will not be returned back to me on earth just like these precious ones won't be returned to earth. My family and I were very blessed that Maddie died from natural causes and that we had time with her through her last days despite the hurt and pain that came with knowing...we were somewhat prepared unlike the families of the school killing. I am so overwhelmed with sadness and pray that God will provide them with comfort and peace as only he can. We struggle daily with the death of Maddie. She is not with us physical but is forever in our minds and hearts. Our hearts still have lots of healing that only God and time will ease...just like he will for the Connecticut families. I pray one day to be reunited with Maddie in Heaven and for those families to also be reunited with their children or loved ones in Heaven.  This world of ours is filled with sin, pain, sorrow but through it all we must have faith in God's love for us

Whys & Hows

Cuddling with Elyssa on the couch and watching Mickey Mouse Clubhouse and missing my Maddie Moo. And tears are streaming as I think of my friend's Sara and her lost of sweet Mylee. It's going to be hard for many of us that lost loved ones this year as we have our first Christmas & other holidays without our sweet child or family member. I know both of our families are very blessed to have other children but the lost of our special girls is so very devastating. I'm not sure how this humongous void is going to be patched up or filled. Time supposedly heals all things but I can't fathom it right now. Our faith has to remain strong and constant so that one day we will be reunited with our girls. Why? Is a question that I find myself asking about the death of our sweet girl. Why then? Why her? Why our family? Why the tragedy? I try to think of happy memories but often think about her last two months and how she struggled so. How she took her last breathe and how her heart stopped beating and how she became lifeless and cold. How much we miss her as we try to live the new chapter in our lives without our sweet Maddie Grace. How we long for her....

Letter to Maddie

Dear My Lovely Daughter Maddie,

The pain of your death is still so raw for all of us. Sorrow hits me at different times throughout the hours, days or week, in particular when we are coming home from church. We would be on a pretty strict schedule and would feed you your formula through your feeding tube on our 40 minutes drive home. Daddy mentioned going out for lunch but Marissa has a friend's birthday party to go to so we may go after church tonight. It's so weird without you. You were nonverbal but you had so much to say with your sweet face and beautiful smiles. I get so emotional and I'm not sure how to stop being so emotional. It's so painful without you. I get choked up when people ask about how we are doing. Most of the time I'm not sure what to say because I'm not sure how I am actually doing. I'm reminded of you when I see parking spots for people with disabilities. Your tag was to be renewed last month and I'm unable to throw it away. My chest and throat gets so tight and I feel so constricted. I made some photo-books of you the other evening. You are in all of our hearts always but I like to look at your beautiful face.  I wish we had one more second, minute, hours, days, or years with you, sweet girl. I know that you are no longer in pain and able to do everything now but we still MISS you so much. Baby Elyssa loves kissing and pointing at all your pictures. She cries and throws a lot more tantrums and is very clingy to mommy...I think all of this is because of missing her big sissy Maddie.  Marissa loves and miss you so much. She stays in the room that you shared with one another. When I got sad the other day she reminded me that we were blessed to have you as long as we did because some children don't live as long and some babies don't even get to meet their mommies and daddies.  Marissa is so wise and is growing up so quickly. Daddy gets really sad and grumpy at times and I know it's because he's missing you. We were able to go to our friends' house last night to celebrate a birthday. I thought about how you were there with us on Mother's Day. We are trying do a new norm but it's still hard, you are constantly in our hearts and on our minds. We love and miss you so much our precious Maddie Grace. I pray all the time to our Heavenly Father to give our family peace and comfort and to get through each difficult day.

Love you always, my darling child,
Mommy & #1 Fan

I want that Happy Ending

The ache and longing for my daughter, Madeline Grace is still so strong. Often I am overcome with such grief that fills my whole body with overwhelming sorrow and despair. I had a dream about her last night one in where the doctors had told us that we had no hope then after an examination that she would have a chance to get better. I woke up with a realization that Maddie was no longer with us. Her life had ended too early at 7 years plus. Did Chris and I make a mistake in taking her to the Children's Hospital Labor Day weekend..where she did not get the compassionate and caring treatment from the neurologist covering that weekend...did she get the wrong meds...was it the coma? She fought so hard in the hospital and came out so full of sweetest and life. Physically she was different with being unable to hold herself or head up. In mid-August Maddie began having more seizures and sleeping more daily. This may have been her climax of her mysterious conditions. I can't blame any particular one thing or person. As a mom, I wanted to conquer that dragon for her...but i was helpless to fight the unknown battle. I know that Chris and I had made the best decision possible with what we knew for our family's situation at the time but it still ended up in a tragedy. I want that happy ending!! I know God is in control and master of all but it sure does hurt to NOT have our Maddie Moo around, to kiss and hold, to listen to her sweet voice, and see her movement so full of life. Her life was taken away too soon for us. I wish that I could turn back the clock to a year ago before all the hospitalizations. We all miss her so much even baby Elyssa at 18 mths often will take out Maddie's Photo album to look and kiss on her sister's pictures. She goes downstairs each day and points to Maddie's pictures. Her older sister, Marissa misses Maddie, and wants to name every doll or stuff animal Maddie. I'm not sure when it's suppose to get easier but sometimes I feel like that happy ending is only in the made up world of fairy tales. For those of you whom never suffered a loss of a child...hold on closely, love your child, enjoy each moment with your child, and be thankful that you have your child with you.

My daughter, Maddie Grace

I know is in a better place

My heart still grieves and her I deeply long

For my sweet child, I must be strong

Heaven I hope to meet again one day

My sweet child, I pray 

The loss I feel is so real

Sorrowful hearts and tears I must deal

Endless desire to have you in my loving arms 

My dear, Maddie always full of charms

I love you forever and ever, angel of mine

Sweetest Maddie with light that shine

Brightly In my heart 

Even if we are temporary apart

Slow process

Maddie's tests results from GeneDX maybe concluded by the end of this week so we might have an answer. I'm very nervous and anxious at the same time...could these results have made a difference in her life, prolonged it or changed her treatment plan? Or would it had anticipated her death and deterioration that we would have focused on that instead of our beautiful child? It still may not tell us anything either...it may also help our family if it's an inherited known genetic condition. No matter what I miss my sweet child with every waking moment of my life.

Sandy, Elyssa and I were able to visit our aunts and cousins in Long Beach, California last Wednesday through Friday. The last time we visited Long Beach, Maddie was with us. We have lots of relatives in Long Beach and enjoyed catching up with them and eating fresh fruit.  We also went to the Pacific Aquarium and on a 2 & 1/2 hour whale dolphin cruise. 600 dolphins swam around the boat. There were so many adorable baby ones. We did not get to see any whales but saw sea lions. The waves were very rough and we ended up getting sea sick so no pictures to show for our valiant effort. Chis and Marissa stayed home. Chris worked and Marissa so grownup stated that she didn't  want to miss any more days of school. We were so blessed that my close friend Ruby and her family were able to help out with Marissa so that we could take the much needed mini-vacation.

It was sad to see my sister leave for Missouri on Sunday. We were so glad to be able to have a nice visit with one another. We wished that we lived closer to one another along with our other siblings. I am still unable to talk on the phone. Hearing my dad's voice the other day made me choked up and I was unable to chat with him. Chris, the girls and I all miss our Sweet Maddie Moo so much. We can't believe that it's been over a month. We are so blessed to have so many loving and caring friends and family. This grieving process is very slow....

Now a family of 4 instead of 5

I never knew Deep pain Could exist With the loss of our sweet child... could be As painful as this pain And the heartache that I'm Feeling right now. I'm going through some of her stuff and have been donating some of her items. It's very painful this loss of our sweet Maddie Grace. I am finding many hidden things of hers that I had kept over the years and even items that were in different little bags from trips to the hospital or trips to the stores. I wonder when this pain will start to lessen? Will it be tomorrow or the next day or next week next month or next year?

This past Thursday was the first Thanksgiving for us without our sweet Maddie. Thanksgiving was the first of many without her. Maddie had a feeding tube but we always tried to get her to test taste the gravy or mash potatoes. We miss her tight and loving neck squeezes and her sweet smiles. This week has been extremely difficult and I not sure when the pain will lessen.  On Black Friday, my sister, Sandy came to visit us from Missouri. She had originally booked a flight to help us with Elyssa and Marissa while Maddie would have been at the hospital for a 3-5 days EEG study. We had the study cancelled when she was put on hospice. Sandy's visit has brought us much comfort. I'm very blessed to have my 4 older siblings whom love my family and I so much. My older brother Tory and his 3 boys put a red rose at both Maddie's and Mom's graveside on Thanksgiving and promised to visit there regularly since she is buried so far away from us.

Sometimes I get very choked up when talking about Maddie. Friends and family have called with concerns and to offer comfort but I'm still having difficulties speaking to love ones over the phone. I don't really have much to say on anything. We are trying the best we can to survive without our sweet girl.  I find it very difficult to remember that we are now a family of 4 instead of 5. All I have is memories in my mind, heart and pictures of my sweet Maddie's beautiful and loving face.

How we are coping

November 14, 2012 4:10 pm

This week has been very hard...I thought my tears were beginning to dry up but a teacher friend of mine at Marissa's school asked how I was doing and offered Her deepest sympathies. Tears welled rapidly in my eyes and I got very choked up as I tried to speak.  I had some dried hours but also some tearful ones. Lots of little things remind me of my darling girl. I love looking at her pictures which showed a dear girl who loved life, was full of life and always full of smiles for her photographer. She was such a strong little girl and fought with all of her might until her body became too weak from all the seizures.  We got a beautiful Azalea bonsai tree from my sweet friend, Melanie and her family in Georgia yesterday. Today, a group at Chris's work sent over a lovely orchid and another group sent fresh cut flowers and yellow roses. All these things of nature and beauty remind us how our girl was so beautiful. The man who delivered the flowers to my house smiled and said that he had just been here last week. I broke the news to him that the flowers were in memory of our daughter that had died at the young, young age of seven. He was very sad and offered his condolences. It's very hard at times but I know that I have to keep trekking along on this lonely road without my baby girl, my heart, my angel.  Sometimes the emptiness is so overwhelming and powerful that my knees get weak and I am unable to stand upright. I have to hold on to my faith and hope that one day I will be reunited with my Maddie Grace, my love, my life.

November 19, 2012

We, the four of us miss Maddie so. Even Elyssa the baby saw Maddie's pictures on Facebook and pointed to her sweet sister's face and called her, "Mad". This was the nickname she gave Maddie because she couldn't say Maddie’s whole name. She proceeded to give Maddie’s picture a kiss and then waved her hand bye-bye. Elyssa did this throughout the weekend when she would point and stare at Maddie's pictures. Marissa spent the night at a friend's house on Friday night and when she came home we cuddled in my bed and she stated how she missed Maddie so much and felt Maddie all around her including in our bed. Maddie's presence is all around us. I remember how her face would light up when I would come home from class or after running an errand. Maddie was not able to call us by our name because she was nonverbal but she recognized everyone around her and gave each person a special gesture or sound. I miss her sweet sounds of delights. The girls and I went out to eat with some friends and enjoyed the love and comfort our friends offered. Maddie was almost 50 lbs and was quite a load for me to carry in and out of bed but I did not mind her weight. I would have bore all her weight forever if I could have kept her forever. I know it will take time but the ache that we feel not having Maddie with us is so very deep and strong. Chris tries very hard to be the strong one in our family but last night he wept openly as we were going to bed. He’s such a wonderful father and husband to the girls and I. We know our lives will never be the same. The hole in our hearts will remain with us until we are reunited with Maddie again. The emptiness will be a great void for awhile but we know that Maddie is with God and as happy as can be...which is what we know according to our beliefs and faith. 

This lonely road

This is a lonely road of bereavement of Maddie that I am on. Over the hills and through the woods, in the evening, dark nights or early dawn this road must surely come out somewhere bright and full of sunshine. I long to see her beautiful smiles and unconditional love. I think back to the last minutes that Chris, Marissa and I held her as she took her last breathe and heart beat. I wished that I could have taken all the pain, needles and prodding that she had endured in her short 7 years in particular the last few months. She never complained and was willing to do whatever was asked of her. She was always full of smiles to see everyone and all the attention that she was getting. I think of Christ whom bore all of our burdens of sin without complaint as he endured agony and pain that no human had to endure. I got very weepy eyed at church this morning singing the beautiful hymnals from deep within our hearts and souls. Chris, the girls and I are so loved by our church family, our friends and our own family. Everyone has offered words or hugs and prayers of comfort but this journey is still something that we must walk alone even by myself.  I must walk alone not knowing when the ache and longing will subside for my sweet Maddie Grace. Some roads we bear with friends, some we bear alone. This moment, this journey, this path I think I only able to bear alone the pain, the agony, the sorrow and ache that I am feeling without my Maddie. Pain and grieving is all I know at this time, this minute, this second.  Today I've cried thinking about her, longing for her...I cried through one of her favorite songs IZ "Somewhere over the Rainbow". I remember how her face would light up along with mine as the song would play on her favorite Pandora Lullaby station. She's somewhere over the rainbow, way up high. I hope one day that I will see her again...I cry. I snuggle up to her favorite bunny and remember the day that we made it so long ago at BuildaBear. Marissa laughs at how her mommy sleeps with a stuffed animal but in the end she also fights me for Maddie's bunny and the memory of our sweet Maddie. The tears keep coming today and seem so endless...I could easily talk to so many close friends or family members but I can't right now. I think back to summer, last spring, last Christmas...what if we'd known... would it have made it any easier? Would we have cherished those precious moments more. Chris and I looked back at all her pictures and the pictures revealed that she had been declining slowly the last 2 years...why didn't I see it..why because we loved her so and had hoped and hoped. Eric Clapton's Tears in Heaven best describes my most inner thoughts right now. Yes, this is a very lonely road that I must take but I'm truly not alone for God is always with me.

Eric Clapton Tears In Heaven Lyrics

Songwriters: JENNINGS, WILL / CLAPTON, ERIC PATRICK

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
Cause I know I don't belong here in heaven...

Would you hold my hand
If I saw you in heaven?
Would you help me stand
If I saw you in heaven?
Ill find my way through night and day
Cause I know I just can't stay here in heaven...

Time can bring you down, time can bend your knees
Time can break your heart, have you begging please...begging please

Beyond the door there's peace I'm sure
And I know there’ll be no more tears in heaven...

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
Cause I know I don't belong here in heaven...

Missing Maddie Grace

Oh, my heavy heart aches for my Maddie Grace. Her presence is in everything around our house, our van, and our thoughts..our hearts. I still can’t believe it’s been a week and 2 days and 4 hours and 15 minutes since we lost our precious girl. I go into her room where her bed is made as if waiting for her to lay on her sweet pillows. I find her quilt blanket and nightgowns and hold her items to my heart and try to smell her sweet scent. These are the items I have yet to wash for fear of losing my sweet girl’s scent even more. I am teary eyed as can be and choked up every time that I get a moment of silence to think of our sweet Maddie Moo girl. I try to focus on the happy days when she would light up a room with her contagious laughs or smiles. Her smiles were always so real and from her heart. I try not to think of her last few months where she fought a very hard battle as hard as she could and instead lost. I think of this past summer where none of this was even in our thoughts. I think of the beginning of August and how much my girl was trying so hard to be as independent as her disabilities would allow her to be. I think of all the home school items and ideas that I had planned for her. All of my dreams…our dreams gone, gone, gone. ...We are so blessed to have so many pictures and some videos of her especially the one of her puckering up to kiss me. When she had come out of her coma, I feared that she would not know how to do a lot of the things that she used to do. Kisses were natural to her as she leaned forward to pucker her lips against mine. I will never forget her sweet and soft lips which were often very dried from breathing through her mouth so much…but she sure could kiss you with all of her love and more.  I will never forget how her arms would wrap around my neck for a big tight hug or how she would hug and kiss to get out of work. I cherish those moments that meant the entire world to me. How I long for my sweet girl with tears of sorrow in my eyes…trailing my cheeks and this BIG empty space in my soul and heart. Then I think of where she is in Heaven above with our Lord and how happy she is…life has to go on for us here on EARTH but oh, how my heart and soul long to be reunited with my sweet Madeline Grace…

Sleeping Beauty Laid to Rest

Sunday, November 4^th in the year 2012, our Sleeping Beauty was laid to rest next to her grandmother on a beautiful fall sunny day as Seven red balloons flew high towards heaven released by 7 children in honor of my sweet 7 year old who will never get to celebrate any more birthdays here on Earth. Beautiful bouquets of bountiful flowers all around, hearts, and angels in the mist, hugs, kisses, comforted and so loved by our family and friends from both near and in spirit from afar. Lovely cards and sweet notes on colorful note cards with endearing messages to add to Maddie's scrapbook. All which my family and I will read and cherish as we remember our sweet Madeline Grace. My husband spoke some sweet words as a Celebrations of Maddie's life here on earth and her eternal one in Heaven. Tears of sadness and joy while we cry for our loss of our darling girl but rejoice for our girl whom is in heaven and without all the pain and suffering she had endured here on earth...all these are priceless as we laid our Maddie Moo to rest on November 4th of 2012. Random thoughts and words are in my mind as I quickly jot them down in this paragraph that probably doesn't make much sense. I read the poem below during her celebration of life which best describes that love and humongous hole in our hearts that Chris and I have now without our sweet Maddie Grace. We miss her so much….

Sweet Child

by Unknown Author

God made a sweet child
a child who never grew old
He made a smile of sunshine
He molded a heart of pure gold.
He made that child as close to an angel
as anyone ever could be
God made a Sweet Child
and He gave that dear child to me
Then God saw His wonderful creation
growing very tired and weak
so He wrapped the child in His loving arms
and said, "You my child I keep"
But now my Sweet Child is an angel
Free from hurt and pain
I'll love you forever, until we meet again
So many times I have missed you
So many times I have cried
If all my love could have saved you
Sweet Child you never would have died.

And a poem Maddie's older sister wrote for her sister. Marissa was unable to read so Chris read the poem to all:

My Little Maddie

My Little Maddie

I miss so much

went to Heaven as I watched 

She was a beautiful girl

She had a beautiful soul.

She couldn't walk, fly,

Nor talk, except in her own way

But now she can do all,

In Heaven above

She is safe from all, too,

Down here is  an awful place for her,

Up there is a wonderful place,

She had a short sad life,

She had some good times, too

We all miss her very much.