Riley has spent the last several days feeling overwhelming sad and angry. He does not want us to touch him or talk with him. He tells us to stop talking and to go away. This is so hard for us to hear. We want nothing more than to scoop him up and to tell him that we're going home and that we'll never, ever have to come here again. We don't want him to feel pain or to be poked and stuck with needles or drugged with sedatives anymore. We want to love him and to hear his voice and to see him smile. We miss our little boy so much. My whole body aches and I feel so sick. I just want him to come home and to sleep in his own bed, to play with his cars. I want to hear him in the backseat of my car reading the street signs and telling me that he sees a Porsche or an Audi or a Volkswagon. I want him to ask us to read Busy Town and Cars, Trucks, and Things that Go (aka Goldbug). I want him to sit at the kitchen table and eat a big bowl of pasta with olive oil and cheese on top. I want him to keep teaching his baby brother all of the letters of the alphabet. I want to see him play baseball again. All of those things seem like a dream now, like something that I made up. I don't understand why this is happening.
Riley is now in surgery. There was some concern that he is developing an infection because his white-blood-cell count was rising. His blood-sugar level was also high, so he was getting a insulin drip this morning. He was taken down around 8:45 am. We were told that surgery could take six or seven hours.
We need him to get better so that he can come home. I just want to hold him and kiss him.
Sunday, April 01, 2007
Hug your children
Posted by Mother in Chief at 4/01/2007 10:07:00 AM
Subscribe to:
Post Comments (Atom)
11 comments:
Suzanne,
I feel your pain. I remember when my Simi had his open heart surgery. Afterwards, he just shut down. It was the worst experience ever. Now here you are, experiencing it over and over and over again.
More than anything, I hope you get successful results soon. And more than anything, I look forward to the day when the hopes you wrote come true.
oh suzanne, how i long for you to take your riley home again to let him be his normal sweet child-self. hang in there, sweetheart.
We are hurting right along with you Suzanne and Ken. You said what we are feeling also. We love you
Grammy and Wayne
Suzanne, Ken and Family,
We've never met but I've been following your blog since my daughter had OHS in February (www.RamonaMae.com). I cannot imagine what you must be feeling. I remember being so lost and in a wilderness of worry.
I'll be hoping and praying for all of you, especially Riley.
Jane, Ramona's mom
Suzanne
My heart aches for you.
I remember back to our dark days of Jilly's two surgeries and you were such a source of comfort and inspiration. Since then you have always remained inspiring with what I perceived to be a very strong woman. But in the face of our babies enduring so much pain it's hard to remain strong and healthy.
It sounds as if you have a truly amazing amount of support. I will keep sending all the good thoughts I can your way and hope that you are able to hold your Riley very, very soon.
"During our lives we're faced with so many elements as well, we experience so many setbacks, and fight such a hand-to-hand battle with failure, head down in the rain, just trying to stay upright and have a little hope. The Tour isn't just a bike race, it tests you mentally, physically, and even morally."--Lance Armstrong
Push through this "tour"....
We're all here for you
Love you guys,
-Dave and Marisa
We do all feel the same! Although, I am only the Aunt - I remember the day Riley was born and how exciting it was (and then how scary)! If I love my nephews as fiercely as I do, I can only imagine what it will be like to have my own children - and what it is like for you to go through this difficult time! We prayed for you in church and you are now on our church prayer list. All of Baltimore has you in their prayers and is sending positive thoughts your way.
Riley will be home soon and will be doing his favorite things and be happy again. Cannot wait to be with you guys...just to hug you and be close. Love, Auntie and Stephen
Hi Suzanne,
I am a Mom and a Grandma, and I teach with Grammy Peg. As I read the blog and started to cry, my 4 year old grandson, Connor, asked to see pictures of Riley. He said, "He looks like my friend, Brett, he has "yellow" hair, too".
Connor hugged me tightly and patted me for a long time. He told me about a little boy from school who is sick, and the children are sending him rainbows. He asked if he could send a rainbow to Riley. I said we will think very hard about rainbows, and send a special one to Riley right now. Then he later said, "You love your grandson very much, right Grandma? I said yes, I love you very much,Connor...then he said, but I meant your grandson in California"!
I said he was my friend's grandson, but all the grandmas who know him, are being Riley's grandmas now, and sending lots of love and prayers. He liked that answer very much. We are hugging our grandchildren, and holding Riley as well in our hearts, and in our prayers. God bless all of you, and bring your little Riley home to run and play all summer! Love, Pam Yax
Dear Suzanne,
My heart aches for you, too. The tears are streaming down my face thinking of all that you and Ken are going through. You know I know what it's like to go through the emotional roller coaster ride that IS the hospital "experience". Some of the worst moments of my life have been handing off my daughter, Cassidy, to the doctors for her numerous surgeries and other procedures. It goes against everything in our nature as mothers (and fathers), even though we know the doctors and surgeons are impeccably qualified. We know what a hard road recovery is for these amazing souls. It's so much more than they should ever have to endure. It is so important to not take our kids for granted.
I want more than anything for you to get your Riley back home with you and for you to get back to your "normal" lives. I truly believe it will happen but it's hard to put yourself in that place right now. I remember with Cassidy's last (& very long) hospitalization that it just seemed like one complication after another and it felt as if we would never all be home together again. We finally are, though. I also remember what an incredible source of support you were for me during those very dark times. You may not feel like it right now but you are a very strong woman and mother. I know you know this, but Riley is lashing out at you and Ken b/c he feels safe with you......he knows you'll always be there for him. I know it doesn't make it any easier for you, though. I remember feeling guilty when Cassidy would get like that with us in the hospital.....like "if only I wouldn't have brought her here for this surgery, she wouldn't be so unhappy and mad at us!" It doesn't make any sense but that's how I felt. The hard truth is that, unfortunately we don't have a choice. If we did we'd run for the hills!!! Riley KNOWS you love him and you are there for him, no matter what.
It's obvious from all the wonderful comments from friends and family that Riley and all of you are deeply loved and supported. Thank you for taking the time out to keep everyone informed. I will be keeping Riley and you in my thoughts constantly.
with much love,
Gwynne
Suzanne,
I want that for you more than anything (for your whole family)!! I am so sorry honey and pray that this homecoming will come true for you soon. I'll give you a hug in person and I am sending you all a hug through cyberspace.
joce
My heart is with you at this difficult time and I have been praying for you all each day. Having just had my own, I can almost imagine the anguish you are going through, and offer all the love and support in my being. You are all strong souls and are blessed to know a beautiful light like Riley. I hope he recovers to play in the sun again with his brother and friends again
Debs & Renee (Helen's sis)
Post a Comment