9 months!

So much has happened in 9 months. We started a foundation called Butterflies of Hope, have held two big events. I'm a consultant for thirty-one all proceeds go to Butterflies of Hope. The websites are butterfliesofhope.org and mythirtyone.com/JanetCongero We have spent the summer traveling, did Rylee's headstone. The list goes on and on and yet, I'm still in the same place as I was 7:57pm on January 10th. Life is going on, I look like I'm living it, I should win an oscar, because it's all fake. Life has stopped, it does not move, I just act. I love when people tell me how great I look, and how well I'm doing. Cut me open, slice me in half because that's what my heart looks like inside, split forever. The holidays are looming and the cement boulder that sits on my chest gets heavier and heavier. I don't want to trick or treat with out Rylee, I don't want to be Thankful on Thanksgiving, I don't want to wake up Christmas morning to a half empty tree, I don't want this life. I don't want January 10th to come. She has been gone as long as I carried her inside me. I live for Drew. He needs his Mom and Dad. I feel like we are doing the best we can for him. His life is as normal as possible. I pray he has no clue how hard this is for us.I'm petrified of the next few months. Every night, I cry. I will never understand. I wonder if I will ever write an uplifting entry again? If I do, I wonder if it will be real or me pretending? I know it's only 9 months but, it's 9 months of not having her. Her big eyes staring into mine, head on my shoulder, hand on my heart, hands in my mouth feeding me food, dreams, just dreams. What's she doing? Who is with her? Can she eat? So many questions.

Say Rylee To Me

This weekend will be 6 months. I don't know how we have made it 6 months and not sure how we will make it though 6 more. I miss her so much.

This is something that was given to us from one of the leaders of a support group we go to.

SAY RYlEE TO ME


The time of concern is over. No longer am I asked how I'm doing? Never is the name of our daughter mentioned to me a curtain descends, the moment has passed. A life slips from frequent recall. There are exceptions close and compassionate friends, sensitive and loving family, for most, the drama is over. The spot life is off. Applause is silent, but for me the play will never end. The effects on me are timeless. Say Rylee to me. On the stage of my life she has been both lead and supporting actress. Do not tiptoe around one of the greatest events of my life. Love does not die. Her name is written on my life. The sound of her voice replays within my mind. You feel she is dead. I feel she is of the dead and still lives. She ghostwalks my soul. Beckoning in future welcome. You say she was my daughter, I say she is. Say Rylee to me and say Rylee again. It hurt to bury her memory in silence. What she was in flesh is no longer with us what she is in spirit stirs within me always. She was of my past but she is part of me now. She is my hope for the future. You say not to remind me. How little you understand and I can not forget. I would not if I could understand you. But feel pain in being forced to. I forgive you. Because you could not know and I would forgive you anyway. I accept how you see me, but understand you do not see me at all. I strive not to judge you. For yesterday I was like you. I love you, will make no exceptions toward you, but I wish that you could understand that dwell in both flesh and spirit. The mystery is that you do too, but know it not. I do not ask you to walk this road. The assent is steep and the burden is heavy. I walk it not by choice. I would rather walk with her flesh. Looking not to the spirit roads beyond. I am what I have to be what I have lost you can not feel. What I have gained you can not see, and I would not have you. Say Rylee to me for she is alive in me, She and I will meet again, though in many ways we've never parted. She and her life play light songs on my mind, sunrises and sunsets in my dreams. She is real and shadow was and is. Say Rylee to me and say Rylee again. She is my daughter and I lover her as I always did.

Poem on a card that a friend sent.

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.

No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author Unknown

The Words are painful

Everyone keeps asking if I have blogged? I want to, but, writing is almost to painful. Mother's Day and 4 months happened with in a day of each other. The day before Mother's Day we picked out Rylee's headstone. I can't begin to explain how awful that was. In that moment, it seemed to real. The guy had to draw the whole thing out. Looking at a piece of paper that is designed like a tombstone with Rylee Bridget Andersen 2-5-07 - 1-10-10 on it hit like a ton of bricks. Why? What purpose does it serve? I will never understand why my arms were not good enough. Mother's protect their children, they make them better. On the night of 1-10 my baby looked into my eyes, crying and gasping for air and there was nothing I could do. I could not take her pain away, I could not save her. So, on Mother's Day I felt as if I had let her down. I am proud to be Rylee's Mother and I will always be her Mama. I just hate that she is not here and that I could not stop her body from failing her.

Would I choose to not have had Rylee?

Shocking question, I know! When I first heard this question by another Mom who lost her child my immediate thought was HELL NO!!!!!!!!!!!!! This Mother was asked this question by a friend around the anniversary of her child's death. It struck me, because she didn't know the answer to it. Her answer was " I don't know" She said " I don't know what I would pick, I am grateful for the time with my son but, to live with this pain forever is so unbearable." She honestly didn't know if her life would have been better never having had her son. I will not judge this women, I know her pain. Her son passed away four years ago and yet, she still does not know, because her pain from his death is so deep. This was so profound for me. My answer is still HELL NO! but, I had to stop and think after she gave her reason for not knowing. She's right, the pain is so awful and it will never go away. For me, I would never trade, the laughs, smiles, tears, screams, hugs, kisses, touch, feel, smell. She was mine, and I would never give that up. I would however, do anything to have her back where she belongs.

3 Months plus

It has been a little over 3 months since that awful night. I was hesitant to write about it. Society believes my life has gone on. That 3 months is long enough. People forget, or don't know what to say. 3 months is nothing, 2o years will be nothing. The gaping hole will be there forever. To society I want to say FU!!! There is no limit to grief, especially when it's the lose of my child. The days are busy, very busy. That is the only way for me to survive right now. We go on for Drew, that is not a choice. On the outside I look whole, on the inside I am shattered into a gazillion pieces. I find it hard to write this because nothing compares to what Rylee lived everyday and how hard she fought to be with us for as long as she could. I love her, it's so plane and simple I just love her, want her, miss her.

Mother's Day is right around the corner. We have to go back to NY. Part of me is happy so I can be at the cemetery and the other part of me just wants to stay here and ignore it all. James and I have to pick out the headstone. How did we get here? A headstone for our baby. I just want to scream. Friday night we will put on our happy faces and help his brother celebrate his engagement. I am truly happy for him but, dread that weekend.

Mitochondrial Disease

Grief

Grief is a tidal wave that over takes you,smashes down upon you with unimaginable force,sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces,only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you,if it doesn't kill you in the making.

Car

Two and half years ago I joined the world of the minivan mom. I hated to admit it but I LOVED it. Anyone who has had or has one knows how much easier it is for travel, friends, car pool, space. We decided to get it shortly after Rylee was born. This is the car that we have traveled all over with, the car that we went back and fourth to the hospital, Dr's in numerous states too. The car that Rylee would laugh at or with her brother, choke, and have seizures in. The car that I would constantly stare in my rear view mirror to make sure she was still breathing, not ripping her tubes out or watch her laugh and smile. This car has so many good and bad memories. When we got back from her funeral in NY I was not sure we would keep this car. Do we even need a minivan anymore? Now, the car is where I cry. See, for everyone else their lives went on and ours have not. I have said this many times. No one wants to see us upset, or have their day brought down. In the car I'm alone. That of course is half the problem. The car is where I can release all my emotions with out doing it in front of others, the car is where I can blast songs that remind me of our sweet girl, the car is something I now hate because she is not in it. The car is something I love because I can let things out. I will cry before I go somewhere or when I leave so I don't cry while there. Do we keep this car? Do I want this car anymore? Is it what is best for us still? I don't have the answers to any of those questions. I will hold on to it for a while before I decide. I would hate to get rid of it now and decide 6 months from now I want the car that she was in with us back. No matter what car I'm in I will cry, I will look in the rear view mirror wishing she was there. At the end of the day it's not the car, it's Rylee no longer being in the physical world with us. None of this is right. This was not the way it was suppose to be. She was suppose to be the one that beat the odds of this ugly disease.

Awesome Video from Amber

A friend made this for us. I can't thank her enough. It's truly priceless.

Make an on-line slide show at www.OneTrueMedia.com

Two Months:(

I keep thinking it can't be two months. This can't be my life. I could not have possibly gone this long with out seeing her beautiful face, feeling her against me, screaming because she did not get her way, no Dr's or hospitals. How? Why? It makes no sense to me at all. I can't wrap my brain around it. That night plays over and over in my head and I can't get it to stop. I'm not sure that it ever will. I walk through life everyday as if we are normal, and we are so far from that. I vividly remember people talking about us behind our back, saying that we were lying about Rylee, and she was not as sick as we were saying because she looked fine. I look like I am fine, yet my world crumbled in an instant and I am far from fine. The hole is so deep and it can never be filled. Please, don't ever judge a book by a cover. I wish my life was moving forward. I wish I could join the rest of the world. I wish she were still here. On FB today a friend wrote something that she thought might help. I am so thankful that we have so many people that care for us. Thankful that she tried to help, so, please when you read this don't take offense. It was about looking back to the first day, and realizing that nothing is as bad as the first day. I could agree with those words and take comfort from them if it were not my child. A spouse, parent, sibling, friend maybe, not my child. I feel no less pain, I feel no more strength, I feel no more healed today then the first day. In some ways it's worse, the numbness has worn off and all I am left with is the reality that I will never see her, feel her, kiss her again. I cry in the shower, the car, I choke up all the time. When will it feel different? Tomorrow James and I head back to NY for his Father's Memorial. We will fly on the same plane that we flew 2 months ago to bury our daughter. We will spend two hours in the place that we last saw her, touched her. We will do it together though for his Father. His life deserves to be honored too. I'm afraid to see everyone. It's much easier to hide the pain from people who have not known us our entire lives. Afraid to go back to the cemetery and face that she is really there and never coming back. The numbness seems better to me at this point. Thank you to all our family and friends who have been there for us. Thank you for helping us celebrate Drew's 6th birthday this week. We continue to be blessed by so many wonderful people. Please continue to pray for Madelyn, Abbie Grace and Savannah.

Signs

When Rylee was getting sicker, and the Dr's were not sure what was going to happen, the word death came up. It hit hard in so many ways but, instantly I thought I needed to let Karen and my family know that if anything happened, James and I wanted Rylee brought home to NY. We did not want her buried in FL. NY is home, no matter where we live and, I didn't want her to be alone. While we sat on the couch knowing our daughters life was coming to an end, I found myself second guessing what I wanted. I didn't know if I could leave her. I felt this way until we were at the cemetery. I needed signs, silently begged for them. I did not want my baby to be alone. We decided to go ahead and bring Rylee back NY. The thought of having her here was worse then leaving her in NY but, still looked for something to tell me this was right. I'm going to back track a little. In October while I was in the hospital with Rylee a close family friend suddenly passed away. I was heart broken for this family, for my parents who wouldn't leave us to be there. I received an email from Mr. Reardons daughter saying that his death had to have something to do with Rylee and that she whole heartedly believed he was another angel in heaven fighting for her down here. I wanted to believe this so much and if it helped his family to believe he was helping Rylee I was all for it. We needed all the angels we could get. I hated that it had to be someone we knew though, and that they were hurting so badly. Now to bring you to the morning after Rylee passed away. I was not taking phone calls. Friends of ours came over and fielded the phones for us. I was upstairs and Terra came up and she looked at me saying "I'm sorry but she won't take no for an answer, it's a Maryann." It was Mrs. Reardon letting my know that she wanted us to use Mr. Reardons car when we got to NY. We landed late into NY so we were not going to Locust Valley until the next day. My parents picked James and I up in Mr. Reardon's car and off we went to the cemetery. After talking about what we wanted we were taken down to an area that had space available. My parents decided to get a plot and James and I would need two. When we got to the area that we could choose from all of a sudden I started to listen to everyone saying " I don't want to be up the hill, I don't want to be in the shade, I want sun, I want some tree's" As I was listening to this all I said was "I don't want her to be alone" Everyone was looking were there was no one around. I knew James Grandparents and my Grandfather were in the surrounding areas which was good but it still did not feel right. My Dad moved over to another area and said "what about here?" then he walked over to see who she would be near and all I heard him say was "Oh my God, I can't believe this" My Mom went over to see who it was. She turned and looked at me and I said "who is it" her answer was "Tom Reardon" We just started to cry. Our baby was not going to be alone. There we were in his car at his grave site and he would be with our baby girl. That was our sign. Sadly, he did not pass away to be her angel on earth but he is her Angel in heaven. James and I took great comfort knowing that Mr. Reardon would be with her. We found out we could not put her right next to him because his son had bought the plot next to him but we bought the 3 plots after that.It was fine, he was close enough. I knew she was in the right spot, God and Mr. Reardon lead us there. My baby is NOT alone!

Heart in the clouds

I just downloaded this layout and although it does not look perfect, the name of the layout is Heart in The Clouds, PERFECT!!!

Displaced

Displaced is what I feel coming back here. I left here to go to caringbridge because I felt I was dishonoring Drew by writing most of my blog post about Rylee. Now, Caringbridge is not the right place either. None of this feels right. A lot of what I write will about the journey of life into death and what I'm going through but I will also write about Drew and what our family is up to. Thank you for following us and for all your support and prayers, they are what keeps us going each day.