Tag Archives: life

My life as mom.

12 May

When my son Kekoa was born in 2005, I became a mother for the first time. When my daughter Oli was born in 2007, I became a completely different kind of mother. I became a special needs mother. When my last daughter Ginger was born in 2010, I became a different mother again. Each child has changed me, made me grow, and taught me new things. Each child has made me the mother that I am today, but not the mother that I will be tomorrow. As each year passes, as each child gets a little older, as I in turn get a little older (boo), I learn. I learn and become a little more comfortable with this messy, unpredictable, smelly, funny, weird, magical thing we call motherhood.

When my son was first born, I was a wreck. Seriously. I panicked over everything. I was terrified that someone was going to breathe on him the wrong way and give him the plague. I was scared that someone would hold him the wrong way and his neck would snap off or they would drop him on his head. I was afraid that formula would make him less smart or that the wrong baby food would give him some kind of weird disease or give him explosive diarrhea.

When he was 2 months old I seriously thought that he might have some kind of syndrome. I studied him too long one night and my lack of sleep and new mother brain absolutely convinced me that something was wrong with his face. Didn’t his nose look a little too flat on top? Weren’t his eyes set too close together? Was his head supposed to be that big? My husband laughed at me and certified me exhausted. I was sent to bed and he looked normal to me again in the morning.

I worried that he slept too much or didn’t sleep enough. I worried about his clothes. I wanted him to have the most adorable new clothes and I worried that while I worked, my husband would dress him in mismatching outfits and wrong colored socks. I worried about him sleeping on his back. I worried about him sleeping on his tummy. Could I cover him up at night or would he smother to death? Was this the right kind of bottle or would it give him gas? Was this swing certifiably safe or would it be recalled in a month? Was I doing it right? Was I doing it wrong? And his manual was…where? Where was his manual? I would think, “This kid should’ve come with directions.” Then I would remember that I’m not so good with directions and then I would worry about THAT! I worried about everything. I was ridiculous. I was NEW!

And then I had Oli. Oh my god. THEN I had Oli!

I still worried about everything, but those worries changed. I worried about all of those other things and more! I worried that she wouldn’t live to see her first birthday and that I wouldn’t get to watch her grow up. I worried that she wouldn’t grow or eat well enough to thrive. I worried that blindness would handicap her in such a way that she would never enjoy her life fully. I worried that she would never walk or talk. I worried that she would never have any friends. I worried that she would never have a boyfriend, go to the prom, or get married. I worried that she would never get to know the joys of raising her own children. I worried that if she did have children, they would be affected by the same eye condition and also be blind. I worried that blindness would not be her only disability. I worried that there would be more.

And then I had Ginger. For the love of all the crying in the world…and then I had Ginger. She cried so much and I was so stressed out about having three children ages 4 and under that the only things I ever worried about with her was whether or not she had been fed and if her diaper was clean. I didn’t have time to worry about anything else. I didn’t have the energy either. She rarely got new clothes and often times, she wore the same clothes that she had slept in the night before. If she wasn’t crying, we were good. She cried all the time. Sooooo…we were not good very often. I still didn’t really worry much with Ginger. Maybe I had worried myself out?

Many of the worries that I had with Kekoa and Oli were valid as a new mother and as a new special needs mother. Many of them were classified as ABSURD, but many of them still stalk my brain at night. It seems that when the darkness falls, some of those old fears silently creep back into my mind. They try to keep me awake, pretending that I can predict the future and the outcome of what life holds for us. Then I wake up in the morning. When I wake up I remember again that life is a journey and an adventure and I don’t always need to know the destination. I only need to be present for the ride.

Motherhood is about changing, adapting, and growing. Old dreams may be lost, but new dreams are acquired. Old thoughts and ideas are discarded and new ones are developed and perfected. Things we worried about before are acknowledged as silly. Other things we worried about before still linger.

The point is…every mother worries. Regardless if you have a child with special needs or not. It’s a requirement for getting your motherhood license. You must worry about the most insane, ridiculous, irrelevant, nonsense matters. And you must worry about the reality and the responsibility of raising good people. We are all just trying to raise good little people and make sure that they grow up into respectable, responsible, productive members of society.

All of us just want to love our children and sometimes we just want to survive the day.

Because some days…mother’s just need to survive the day.

HAPPY 6TH BIRTHDAY OLIANA!! MAY 10TH 2013

10 May

I made a slideshow for Oli’s 6th birthday. *Warning* Content may cause viewers to burst into tears. Use extreme caution when viewing and the use of tissues and/or sleeves is advised:) I hope you guys enjoy the pictures, the story, and the music.

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But she might…

8 May
As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, "Oli we're HERE!!! It's time to ride your horse!" And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn't understand. Just look at her face. I KNOW she knows.

As soon as my tires hit the gravel and I pull into R.O.C.K where Oli rides her horse, she gets THIS look on her face. She knows exactly where we are and what is about to happen. Then I say, “Oli we’re HERE!!! It’s time to ride your horse!” And she starts frantically clapping and yelling. She knows. No one can tell me that she doesn’t understand. Just look at her face. I KNOW she knows.

I posted this picture on my facebook page today. I posted it to show an example of what one of Oli’s expressions look like. This is an expression of “I know what is happening and I’m going to sit really quietly for a second and then I’m going to get really excited because I love what we’re about to do”. She has LOTS of these looks.

Some people have told me throughout her life that because she has an intellectual disability, is delayed and has autism, she doesn’t understand. That she couldn’t possibly understand because she doesn’t speak and because her cognitive development is delayed. We know that she is missing some of her genes off of her 14th chromosome. We know that this has affected her development and her learning. We know because she has done everything later than everyone else. We know that. I know that.

I know that despite being told that she may never walk independently, eat independently, have anticipation of events, be aware of her surroundings, have a sense of humor, the ability to laugh and to love, be funny, be brave, show strength and determination, cry, be sad, be mad, get frustrated… she has. I know that she has proved those people wrong every single time. And I know that she DOES understand. She does. I know because I KNOW her. Sometimes I feel like I know her better than I know myself. For whatever reason, she just can’t tell me what she understands with words.

I know that I may NOT know exactly what she is capable of in the future, but that I will ALWAYS give her a chance.

I know that I will ALWAYS believe in her.

ALWAYS.

That’s my job as her mother.

To believe in her despite all the odds, the challenges, the setbacks, the regression, the frustration and tears. Despite text books that tell me what she will or won’t do. Despite well educated doctor’s opinions and the opinions of the rest of the world. I will believe in her. I will never expect her to do less than her very best and I will never accept the words “She will never…”.

Because she might.

Because she probably will.

And even if she doesn’t do something or say something, I will go to my grave believing that it is still possible.

Some may call that naïve or say that I’m in denial. I’m not. I know that there is always the possibility that she will never move out, go to college, or get married.

But she might…

I will never ever be able to look into her sweet face and not see the sky as the limit. I will never take anyone else’s opinion on what she will or won’t do as fact. Oli will have to prove it to me. And even then, I will still push her. I will push her to have confidence and believe in herself. To set goals and achieve them. I will push her to develop her own sense of identity and to be kind. To love other people and to be respectful. To be understanding and to be grateful for what she has. To live and to laugh and to never look back. To view past mistakes as learning opportunities and chances to grow. To greet each day with optimism, and with a smile on her face, and to act better than she feels. To know that every day will not be perfect, but that’s okay. I want to push her to do her best with what she has and to be proud of who she is. I want her to be prideful instead of pitiful. I never want the world to take pity on her and I never want her to feel like she deserves it when they do.
Because they will.

She may never be able to do these things.

But she might…

IN MY DREAMS, SHE FALLS OFF THE CLIFF

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?

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.”

Mombot Commands

9 Apr

I feel like I’m some kind of mombot running around performing preprogrammed tasks on autopilot and spewing out prerecorded commands to my husband and children. These mombot sentences can be heard several times throughout an average day in my house. I say them so often that they come out in a monotoned, digitalized voice that echo one after another.

Sometimes my recordings have a skip in them and I don’t even realized that I’ve repeated the same sentence 3 times in a row.

” Stop. Picking. Your. Nose. Stop. Picking. Your. Nose. St-st-st-o-o-o-p…P-P-P-Picking. Your. Nose…What’s. That. Smell. What’s. That. Smell. Wh-Wh-What’s. That. Smell…”

And I wonder why my children tune me out?

Here are the top 20 commands and questions that are programmed to loop throughout my day.

1. What’s that smell?
2. Stop picking your nose.
3. Go potty.
4. Eat your dinner.
5. Stop whining.
6. Stop fighting.
7. Stop yelling.
8. What’s that smell? 🙂
9. Is that poop?
10. Is that a booger?
11. Why are you crying?
12. Don’t put that in your mouth.
13. Don’t put that up your nose.
14. Go to bed.
15. Stay in your bed.
16. Go back to bed.
17. No, we can’t buy that.
18. Put your toys away.
19. I love you.
20. Did you fart?

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?

Is She Afraid?

4 Mar

I can only imagine that preparing a typical child for surgery is difficult for any mother. Trying to explain something about hospitals, doctors, sleepy medicine, discomfort, and recovery time to a 5 year old must be like trying to explain Japanese to someone who has never heard of Japan.

I have never had to do it. Oli is the only one of my children, so far, (I have a sneaky suspicion that Ginger will one day break something doing her karate, dance, acrobats off the furniture) that has spent any significant amount of time in the hospital.

This last October, Kekoa fell off of his bike and required a few stitches. However minor it seemed to everyone else, it was traumatic for him. He was really scared on the drive there. He wanted to know exactly what they would do, exactly how much it would hurt, and exactly who would be fixing him. He wanted to know what would happen if they couldn’t fix his cut? What would happen if it hurt too bad? (Worst case scenarios. I wonder where he gets this?) He needed all of the information and was not so thrilled about trusting someone he didn’t know to make him better. Up to that point, I had always done that.

“Why can’t you just fix it mommy?” He asked me that multiple times on the drive there. I told him that the cut was just a little too deep for mommy to fix. I talked to him about the nurses and the hospital room where it would happen. I told him that they would put some numbing medicine on it and that it probably wouldn’t hurt too badly. I told him that I would be right there with him the whole time.

Despite all of these conversations and words of comfort, he was really scared and nervous. Until we met a boy a little bit older than him in the ER waiting room that had gotten stitches a few months before. He told Kekoa all about it and assured him that it was no big deal and that it didn’t hurt. He immediately looked at me with relief in his eyes and said “See mom. It’s no big deal. I’ll be fine.”

I could only smile and thank that little boy for providing the comfort for my child that I just couldn’t seem to give him.

As I walked Oli into that same hospital on Friday morning I wished that someone could provide Oli with that. Despite talking to her in the waiting room, telling her we were there to see a doctor, and explaining what we were doing step by step, I still wondered if she felt afraid. It’s hard to explain a concept like surgery to Oli. I don’t know any other way besides just talking about it like I talked about stitches to Kekoa. When the nurse took her temperature, her blood pressure, listened to her heart and then had her change into a hospital gown, I just talked her through it.

But does she understand what is happening? Does she think we are at her pediatrician’s office, her neurologist, or another specialist? Does she notice that a hospital smells different than a physician’s office? Does she think that someone is going to hurt her eyes? The last time she had surgery she had an implant put in her eye. This was a painful surgery. Does she think that I am doing this to her? She’s always pretty mad afterwards. What does she think when I hand her off to a stranger and don’t go with her? Is she scared? Does she think that I’m not there for her?

I don’t know. It worries me more and more as she gets older. I think that she understands a lot and I talk to her like she does. The nurse did give her a sedative before they took her back. I’m sure it helps because I assume that she is scared just like any other child would be.

A child life specialist came into her room before the procedure and asked what would help her not to be afraid. I just said “Talk to her. Talk. Talk. Talk. Tell her everything. Tell her your name. Tell her before you touch her and tell her exactly what you are doing before she goes to sleep.” I told this to everyone who walked into her room that morning. Both the doctors, 4 different nurses, the audiologist, the student audiologist, and the child life specialist.

When it was time to take her back to the operating room she was fairly sedated and had a glazed look on her face. I gave her a kiss, told her that I loved her and that I would be there when she woke up. I handed my precious girl to the OR nurse who carried her away and prayed that God would go with her. I prayed that she understood what was happening and that she wasn’t scared. I prayed that they would quickly get her off to sleep so that if she was scared, she wasn’t for very long.

This not knowing…not knowing what she is feeling…is the absolute hardest part of being Oli’s mom. It’s so hard not knowing just what she understands.

I Choose To Call It “Helpfulness”

1 Mar

“No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you’ve got, say “Oh, my gosh,” and recognize that of all the balls there ever were, this is the one you should not drop. It’s not a question of choice.”

― Marisa de los Santos, Love Walked In

All I have to say today is: Good thing I started a blog when Oli was born and updated it a few times because I have forgotten half of the things that Oli did between the ages of 1 and 2. Stress induced amnesia? Sleep deprivation?

She started talking around the age of 2. She had about 15-20 words back then. She only said one word at a time except on one occasion where she used two. I guess this happened?.. because I blogged about it. True to my absent minded, fog clogged brain self I didn’t mention in the post what that two word sentence was. I have no idea now. That sucks…

She used to say the beginning or the end of a word. For milk she would say “ka” and later “ilk”. For drink she would say “dri”. She did say mamma all the time. It started as “ma-ma-ma” and later became “mom-mom”. Always strung together.

Maybe she got it from Kekoa? That boy never said my name just once and still doesn’t. It’s always “Mom. Mom. Mom. Mom. Mom.” It doesn’t matter if I answer right away or not. Of course I tell him he sounds like a broken record. Apparently I am no longer allowed to use this terminology with children, per the husband. He told me yesterday “People under the age of 25 have no idea what that even means. You can’t say record, tape, VHS…”

I can say it as long as I want. I can even yell it into a phone and then slam down the receiver!

When did I become old?

What was I talking about?….

Oh yeah, Oli. The main character in my story.

She also started learning to walk around this age. Not walk- walk, but Oli walk which started with me holding her up and moving her legs in a walking like motion.

So…basically it was just me, puppeteering her around the room.

I guess now that I think about it, it was ALL me.

I should describe this part instead of Oli learning to walk as Mommy forcing Oli to learn to walk. I was so impatient. Instead of waiting for the poor girl to do things at her own pace and in her own time I would impose my “helpfulness” on her.

I can only imagine what Oli is thinking when I set out to help her learn something new. Walking… talking… perhaps braille reading?

“Really mom? Why don’t you just go ahead and do that by yourself and come on back down to earth when you’re done. I’ll be here waiting in the land of reality when you get back.”

I chose to pretend that I helped her learn to walk.

Okay, really I didn’t. But I tried. I tried for almost 2 years. When Oli was ready to walk she did. When she was 3 and a half. Despite my deceptive attempts to tell people she was learning to when she was 20 months old. Who did I think I was fooling? If you came over to my house and saw me hunched over, carrying my 2yr old with just her feet dragging on the floor, would you have been convinced that she was walking?

“Look World! I am a genius! I give you—-Oli’s first steps! Just pretend you don’t see me here doing everything for her.”

I can’t help but laugh at my faked enthusiasm, my I-rock-at-this-parent-thing attitude and blatant foolery in my old blog posts.

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The Night Was My Enemy

1 Mar

“Sometimes the hardest part isn’t letting go but rather learning to start over.”

― Nicole Sobon, Program 13

I called Oli’s doctor and told her our decision to try Melatonin. She suggested that we start at 3mg and see if it helps. The first night I gave it to her I was so hopeful that she would begin a normal sleep pattern. I crushed up the pill and mixed it in some applesauce at bedtime. As Oli closed her eyes I whispered a little made up song in her ear.

“Sleep sweet Oli. Sleep tonight. Sleep sweet Oli until it’s light.”

It worked!! For the first time in months she slept through the night. I would like to credit my little song and the mystical powers of my voice, but there was a reason I was whispering it to her and not singing it.

Melatonin was now my best friend.

It was wonderful seeing what regular sleep did for her. She had more energy, ate better, and put on some weight. She finally weighed 20lbs at 20 months old.

It helped me tremendously too.

Before we tried Melatonin I would occasionally have anxiety attacks when darkness fell. I worried every night about how many hours of sleep I would get. Was I going to be able to function at work the next day? If I was staying at home the following day I worried that my temper would be short and that I would be too exhausted to do anything productive with the kids.

The night was my enemy. It held all of my fears, inadequacies, demons, unfulfilled dreams and unanswered questions. It made me feel weak and useless. I would hold my playful baby in my arms at 2am and silently cry so she couldn’t hear my anguish. I would turn my head so my tears wouldn’t fall on her face. And I would pray in the dark. I prayed and prayed for peace. I prayed for comfort and then I would wrap her up in her blanket and hold her tightly to my heart. Oli’s link to my heart and the complete love I felt for her was the only tether I had binding me to this life. This place and my role as a mother. I held onto her and gave this tiny person the power to hold me down and keep me from floating away.

Once she started sleeping it lifted some of those anxieties from my shoulders and allowed me to take a much needed deep breath. I actually took deep breath.

I hadn’t done that in a very long time.

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