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