Tag Archives: death


29 Apr

Have you ever had a dream that you wake from completely devastated, but so happy that you’ve awoken from your worst nightmare? A dream that sits way too close to reality for comfort?

I’ve had a few of them, but three of those dreams stand out profoundly. These are three that I will probably never forget. All of them involve my Oli.

The first one was the recurring dream that I told you about in the very first blog that I wrote for my story. The dream that I was going blind. You can read it HERE. I’ve never had that dream again since Oli was born.

The second dream/nightmare happened after Oli had her first big seizure and we almost lost her. I must have had some kind of post-traumatic stress. I dreamed that she died that afternoon.

A van pulled up to my childhood home with my daughter’s body lying inside it. I met the driver of the van at the end of the driveway. I already knew that she was gone. The driver dipped his head in the sun, casting a dark shadow across his sorrow filled eyes. Then he walked around to the back and opened the hatch. When he turned around again he had a little bundle wrapped in a brown blanket in his arms. I couldn’t see any part of her. Except for her feet. They were lying across his forearm. I couldn’t tear my eyes away from her feet. She was holding them in a certain sweet way, so delicate and petite, crossed at the ankles. He handed her to me and I carried her wrapped in the blanket over to the shade of a tree and laid her quiet body beneath it. And then I just sat there. I sat there staring at her beautiful little feet. My heart broke into a million little pieces. How could she be gone?

I woke up from that dream gasping for breath, feeling the happiness and life being squeezed right out of me. I ran to the other room and sat on Oli’s bed. I sat there and stared at her chest, rising and falling with life. I rubbed her feet beneath the blankets until they wiggled and pulled away from my hand. I sat with her until that image of her lifeless form left my mind. But, it hasn’t left it completely. I still see those little feet lying motionless in the grass. I still vividly remember that dream.

It terrifies me.

The third dream I had last night.

I had a dream that I wasn’t her mother. I was her nanny and I was moving. I was moving very very far away from her and I wasn’t going to be able to see her again. It was so strange because in my dream I was looking at Oli through someone else’s eyes. Not my own. I saw her as other people must see her. She wasn’t my child, but I felt fiercely protective of her and completely torn apart at the thought of not watching her grow up.

She was sitting in a chair as I was saying good bye. Her curly hair was blowing in a breeze coming in through an open window. Her lips quivered in sadness. Her little eyes were filled with tears. She knew I was leaving.

I said, “Oh Oli. How am I ever going to live without you? I don’t want to go away. I want to stay with you forever. How am I going to survive?”

She wrapped her arms around my neck and nuzzled her face into the crook of my collarbone. Just like always. And then we said good bye. I cried and sobbed and screamed her name.

“Oli! Oli! No! Please! I can’t leave her! Don’t make me leave her!” The anguish washed a red tide over my heart and wiped all happiness away.

And then I woke up.

I woke up and my Oli was still sleeping safely in her bed. I hadn’t been taken from her. I was still her mother.

I don’t know what these dreams mean? I don’t know if other moms have these types of nightmares? Are other special needs moms terrified of losing their children? Do we all notice a visible line between life and death and are distinctly aware of keeping our children walking on this side? Do we all hover and protect, trying to keep them from falling off the edge only to have them flail beyond our control off of the cliff in our dreams?
I’ve never had dreams like these that involved my other children. They’ve never died or been taken away from me.

With Oli… I have. I still do.

I’m probably just terrified of losing her. Sometimes her life seems so fragile compared to everyone else’s. She seems so much more breakable. I imagine a lifetime of loving her and laughing with her, but I know that there is no guarantee. There is no guarantee with anyone, but with her it just seems so much more real.

Sometimes I just can’t seem to help being petrified that I’m going to lose her. I don’t want to lose her.

Chasing Rainbows and Running from Bombs

16 Apr

I’ve been thinking about writing this post since I heard about Gavin’s (Chasing Rainbows)death. He was 5 1/2 years old. He was a special needs child with special gifts and special parents and a special brother. If you haven’t read his mom’s blog yet or visited her facebook page, please do. You will be changed forever.

I’m sure I’m like most parents of special needs kids when hearing that one of our family has passed. I think, “What if that was my Oli? What if it was me taking pictures of my sweet girl as they wheeled her down the hall for the last time? What it was me giving her a bath and a kiss for the very last time?”

And then I sob and I cry and my heart breaks for this mother all over again.

I like to think of them as family because we are all in this together. Gathering inspiration and support, raising awareness about differences and forging our way trying to make an impact and an impression on the world that our kids are just like everyone’s else’s kids. Just a little bit different in more obvious ways.

I think that Gavin and his parents did that in his few short years on this Earth. He did the impossible. He made a difference. And he did it with his life and his death. His mother and father also achieved a rarely attained goal. They have changed the world.. They have changed the world by sharing their story with us. Sharing their heart ache and their pain. Sharing their courage and strength with honest words and tear stained faces. They have taken an unimaginable, horribly sad event and maintained dignity and grace while the earth shakes beneath their feet. They have made selfless choices and decided that despite their grief and darkness they have chosen to give another family light. They tried to donate Gavin’s organs.

This was not to be however.

Part of his liver was unusable so it rendered the entire organ unusable. His corneas were not able to be transplanted either. Rather than be shattered by this one positive that his family was clinging to, his mother maintained her poise and managed to never lose sight of what life is really all about.

Living life on life’s terms.

She talks about giving gifts and expecting nothing in return. Because that’s what a gift really is. And if it doesn’t work out? Then it doesn’t work out. They tried. I will stop there because I REALLY encourage you to visit her blog and read her story. Like I said…it will change you.

So I’ve been thinking about this family. Gavin, his mother Kate, his dad Ed and his brother Brian. This family that I have never met, never spoken to, never “met” on facebook or on her blog. I know nothing about them other than what I have read and what others have posted about them. I don’t know them and yet I’ve been praying for this little boy whose pictures I can’t stop looking at and whose sweet little face that I can’t seem to get out of my head. And then I ask the obvious question.


Why do these things happen? Why did such a small, defenseless, amazing little boy have to lose his battle so early on. Why? He has touched so many people. He has given so many people strength and courage and taught others to continue on in the face of difficult situations, in spite of labels and disabilities and the unknown. He just continued on. He lived and he loved just like so many other little 5 year old boys. Except that he wasn’t. He was Gavin. And for some reason people were drawn to this little guy and his story. They were drawn to the way that he lived his life.

Just like people are drawn to my Oli.

I don’t know why these things happen. I don’t know why people are drawn to these little people who never even utter a word. I think it’s because of what I stated above. It’s because of the way that they live their lives. Just like my Oli, Gavin showed courage in fearful situations and strength where others would be weak. He celebrated accomplishments with the ferocity of an Olympic athlete. Because life is not always easy for our kids, but they carry on. The carry on despite slow progress and others telling them what they can and cannot do. They carry on and thrive and progress and amaze people every day. They reward us and surprise us every single day. They make possible the impossible.

And I don’t know why Gavin had to die. But I do know that although he is gone, he will NEVER be forgotten. I know that people all over the world are fulfilling his mothers wish for random acts of kindness in Gavin’s name. I know that he had a purpose and his purpose is to continue to be an inspiration. Continue to be that light in the darkness.

Little Gavin lost his life yesterday and then the bombings at the Boston Marathon happened. Another little boy died. A little boy who also has a name. His name was Richard and he was only 8 years old. I thought, “I wonder if this family has seen this? I wonder if they know that another little boy died today?” And I can’t make sense of that either? I can’t make sense of the fact that Gavin got sick and died, but Richard wasn’t sick at all. He didn’t get an infection or have cancer. He didn’t get into a car accident or anything else. His life was taken. Taken, on purpose, by another human being.

How do you go on after that? I cannot imagine either one happening, but the rage and the anger that I would feel if someone else stole my child from me…would never be forgotten. How do you see the positive in that? How do you get to the light?

I don’t know. I’m sure that Richard’s family knows though. I’m sure that he touched the world in his own way. I hope that we learn more about this little guy in the days to come. Because I need to know that a life was not lost without purpose. I need to know that this child will be remembered and that people will not forget what we lost yesterday.

I don’t know who would do such a thing. I’m not even going to venture a guess. It has happened and they will catch who is responsible for it. That…I am sure of. Rather that feed more hate with hate, can we remember the people who lost their lives yesterday? Richard in Boston and little Gavin. Can we keep them in our hearts and heal without spewing more violence?

I’m not saying not to be angry. Of course not. But, can we remember what really matters? Can we remember the kids and the friends, and the moms and dads, aunts and uncles, brothers and sisters, who will never see their loved one again. Can we honor their memory and be kind to one another? Can we stop the hatred and stop reacting with fear? Maybe just for a day. Do something nice for someone else. Do something in Gavin’s name. Do something with love rather than hate. How many times are we angry with someone and cannot WAIT to give them a piece of our mind? How many times do we take that same fire in our hearts and tell someone else that we love them, or appreciate them? How many times do we close our mouths to keep the vicious words from pouring forth? How many times do we open our hears and allow others to see our vulnerability. How many times do people see our love?

Never did words ring truer to me “Be the change that you want to see in the world.”

Something That I Don’t Talk About

28 Mar

Aggghhh….Okay. This is the post that I didn’t really want to write. I didn’t want to write it because it makes me really sad. Which actually says a lot.

People have asked me to talk about what I felt like once I became pregnant again. What happened to make me decide to have another baby once I knew all that I knew about Oli.

I’ll start by telling you that it wasn’t an easy decision. Especially after we learned that Oli had a genetic deletion. It was something that could affect subsequent babies, although the likelihood was only 5%. 5% feels pretty huge once you already have an affected child. Any percentage above 0 feels like an enormously stupid roll of the genetic dice.

You want to know how I felt when I looked down at that little white stick and saw 2 pink lines appear?

I felt terrified. I felt scared and selfish and happy and overwhelmed.

I felt like I had probably just sentenced this tiny little miracle to a life of blindness. A life of doctors, therapies, and disabilities.

I didn’t have a whole lot of time to process learning that Oli’s condition was genetic. I found out about her OTX2 deletion and then found out I was pregnant just a few weeks later.

Many scenarios ran through my head once I knew that I was going to have another baby. One thought, which I really really HATE to talk about, was maybe I shouldn’t have her. Maybe I shouldn’t go through with this pregnancy.

I don’t like to talk about that thought because the idea of my Ginger not being a part of my life literally brings me to my knees with pain. It sends a stabbing knife of sorrow straight through my heart and makes it hard to breathe.

My baby girl. My little Ginger. I had seriously thought about not having her.

See no one really talks about this.

I was raised Catholic and abortion is something that you are never allowed to even mention let alone talk about. I never thought it would be something that I would ever consider. Because I never thought that I could do it. I always thought that if I got pregnant then I got pregnant and it was my responsibility to take care of that baby. Abortion was never an option.

Well…right at that moment…it became an option.

My views on abortion have always been more pro choice. Mostly because I don’t believe that I ever have a right to tell YOU how to live your life. That goes for my beliefs on everything. Religion, marriage, abortion… You name it. I don’t feel like I have a right to tell you what’s right for you. I’ve never lived your life, had your experiences, dealt with what you have. I never would feel comfortable telling you what to do. I don’t believe that anyone really should. Just because something may or may not be right for me does not mean that it may or may not be right for you.

So anyway…I struggled with what the right thing to do for me, my family, and my unborn baby might be. I did a lot of crying and a lot of praying and pleading that nothing was wrong with this baby. Eventually one night I was lying on the couch late at night. I remember lying there thinking, I have to make a decision before it’s too late. I tried to picture myself going into a doctor’s office and having the procedure. I tried to feel what it would be like to not know that anything was wrong, but choose to play it safe and not have the baby. How did it make me feel? Could I live with myself terminating a baby if I didn’t know that she was blind? What if she was blind? Was it really that bad? Even if she had other disabilities or something else happened, was it really better to never have been?

The answer I came up with that night was…no. No. I couldn’t do it. I couldn’t end a life based on the fact that it might be hard for her. I couldn’t not have her because it might be hard on me. It was going to be scary, but I just couldn’t terminate the pregnancy. I decided that it would be way worse to NOT give this child a chance at life, then to just have the baby born blind. I chose blindness as a possibility for this child over death.

I’ve never made a more significant decision in my life.

I went to the doctor and then called the Albert Einstein Medical Center to see if they could do genetic testing on the baby before she was born to find out if she was missing her OTX2 gene.

It was scary. I was scared the entire 9 months that I was pregnant. Even after the amniocentesis came back and said that she was fine…I was scared. Because what if something else was wrong? What if they missed something? They missed noticing that Oli’s eyes were small before she was born, what if they missed noticing something with this baby?

It was scary because I continued to wonder if I had made the right decision.

Another baby was going to take time away from Oli. She needed so much more time because of therapy and doctor appointments and she just needed more help with everything. It was going to take time away from Kekoa. He had already had so much of his time stolen away by Oli’s disability. Another baby was going to take more. And the baby. What about the baby? Would I have enough time and energy or even enough emotion left for this baby? Would this baby get enough of what she needed?

Was this the right thing to do?

Could I do it?

I had all of those questions throughout my pregnancy.

And then Ginger was born.

I laid my eyes on the most beautiful baby girl. This little baby looked at me with eyes that said “Just love me. I don’t need anything else. It doesn’t have to be perfect. Just love me.”

And I knew that I had made the right decision.

It was the right decision for me. I look back and think about what if things had been different? What if something had been wrong? Now I know that it wouldn’t have mattered.

It would have been a different road, but it wouldn’t have mattered. She would have been perfect anyway.

Because Oli is too.

Oli has taught me that life doesn’t always lead me down the nice, friendly, easy path. It’s not always sunny and clear. And that in my life I have received gifts that I never would have looked at as gifts. But that’s exactly what they are. If my last child had been born with a disability then she would have had a disability. She would have been different. And that’s okay. Different is just different. No more, no less.

I would have gotten through it.

Just like we all do when life hands us something that we are not expecting. We hate it, are angry with it and scream at it. We deny it and argue with it. And then we get through it.

And we move on.

Because really?

What else can you do?


Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

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