Tag Archives: compassion

It’s a beautiful life.

20 Nov

When Oli was born my son Kekoa was only 17 months old. He had not even spent a year and a half in this life. On this earth. He was so incredibly young that I was still getting to know his little personality. I was trying to figure out what kind of person, what kind of man, he would grow into.

What kind of grooves would this little boy fall into after having a sister born with significant disabilities?
Would he stay locked into hers? Would he be able to find his way out? Would he be able to tread his own path, defining his own grooves? Would he be able to define himself and to find his own identity or would he continually be forced to follow along behind her?

Would I force him to follow along behind her?

Would he be mad at ME? Would he resent ME for the events in his life that were about to take place?
Would he resent HER for being born the way that she was?

As I sat on the corner of the tub, bathing my 17 month old little boy, I asked myself all of those questions. I cried over all of the possible answers that lay before me.

I cried for the little boy that I had promised to do everything for. I cried over the fact that I had somehow unintentionally just made his life so much harder. I cried because I was not going to be able to fix this for him. I was not going to be able to make this easy.

When she was born I never even considered the possibility that her birth could be the best thing that would ever happen to my family. I couldn’t even dream of recognizing the positive outcomes because I was so drawn into the pity parties and the negativity. I couldn’t stop feeling sorry for myself long enough to see the beautiful forest from the trees. I was stuck in an outcropping of horribly ugly, brown, leafless, dark, gnarly, trees. I hated those stinking trees.

As life moved on…

As I moved on…

As the world moved on… I began wondering what kind of person this experience would mold my son into. I began realizing that we had a unique opportunity to view our daily life as a constant lesson to learn about humanity. The good and the bad.

I learned and began to teach my son how to respond rather than react to people and situations that might not always be positive. I learned and then taught my son compassion and understanding rather than anger and resentment.

We talked about WHY people sometimes respond the way that they do to Oli. We talked about HOW we could and should respond when people are mean. We talked about how most people just don’t see the world the way that we do. We talked about how people are generally good and that sometimes they just don’t understand and are curious, but might not know how to ask about her condition.

We talked about a lot of things. We still talk about a lot of things.

Kekoa is 8 years old now. We talk like we’ve always talked, but now I try to get him to tell me how he feels about things. I try to get him to tell me how it makes him feel if someone is mean to his sister, but it’s hard.

He’s only 8.

Mostly he just says that it makes him sad. He says that he wished people understood her better. He wishes that people knew that she was just like them, but unable to speak or to see. He says that he wishes that they would consider her feelings when they were mean and not treat her like she doesn’t understand.

I wish that too Kekoa…

So we talk about those feelings and the actions that we can take to make it better.

I never really know how much he understands when I try to help him work through these things. I never know what he does with these talks and these experiences when he walks out of my front door in the morning and heads off to school.

Until now.

The mom of one of the girls in Kekoa’s school emailed me this morning to tell me a story about my sweet boy.

She said that her daughter Rachel, was being picked on by some boys at recess earlier this week. Her daughter told her that Kekoa had stood by her, comforting her, and helped her to reach a teacher who could help. Rachel told her mother later “Kekoa knows how to treat girls because he has sisters.”

Because he has sisters.

Because he has Oli.

Really that’s what it comes down to.

He has learned such compassion, such respect, such infinite wisdom because he has Oli to teach him.

He has a sister who has never looked into his eyes, never spoken his name, never uttered a sentence, but has taught him to be an incredible human being.

She is teaching him how to become a wonderful man.

I can see how beautiful my trees are now.

I can look my son in the eyes and never feel remorse or sadness about the way our life has turned out.

I can look at him and see the amazing gift that Oli has given all of us.

She has made every single one of us into a better person and has allowed us to live a life that I never even would have imagined.

It’s a beautiful life.

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Why I Feel The Luck Of The Irish Today

17 Mar

In the spirit of St. Patrick’s day, Irishmen, luck, and all that, I thought I’d write a few reasons why I think I’m so lucky to be a special needs parent. Now, before you throw up a little from my extreme sappiness and begin thinking that I am THAT mom (you know, the one who tells you everything in life is great, chocolate and strawberry milkshakes, cotton candy, and unicorns). Just know that I didn’t always feel this way. If you’ve read most of my blog you already know this about me. (And if you haven’t read it, please do. If you want to. I’m saying that in my mom tone.) And also know that I don’t feel lucky every single day. Some days are really rough, but who doesn’t have those days? Special needs child or not. My rough days might just involve more Q-Tips, poop, and dinners gone wrong. I just try to remember to be grateful every day because if I forget that…it’s a very dangerous place for me to be in (Eventually I’ll get to that part in my story. Stay tuned. It’s a good story!)

I felt soooo sorry for myself for such a looooong time.

Why did this happen to me? I didn’t ask for this. I didn’t expect to have to have this kind of responsibility in my life. I didn’t want to drag my child to hundreds of doctor appointments, therapy appointments, put her through surgeries, conformer appointments, evaluations, and watch people as they judge her, make fun of her, or feel sorry for her. I also didn’t want people to judge me, question the decisions I made for her, or feel sorry for me.I didn’t want to have to watch my child struggle. I didn’t want to constantly wonder what she was thinking. Wonder if she was really happy. Wonder what she wanted and what her dreams were. I never wanted to feel like no matter what I did, that it wasn’t enough because I just couldn’t fix it for her. I couldn’t make people understand her or love her or treat her with compassion. I couldn’t stop the stares or the questions. And I couldn’t really know how much of it she understood.

I didn’t ask for any of it.

But, you know what?

Neither did Oli.

Neither did she.

So, eventually I got my head out of my ass and stopped being the person that I hated. The one who felt sorry for her and felt sorry for me.

Which now brings me to the reasons that I feel lucky to be her mom. After that very long winded introduction.

1. First off, I feel lucky to be anybodies mom. Seriously. To be in charge of little people who are so interesting and funny, strange and bizarre, naughty and annoying, but who are ALWAYS loving and amazing. It’s so crazy and I cannot believe that it is possible to love anyone as much as I love my children.

2. The people that I have met because of Oli are some of the most influential people in my life. Other moms who share their journey with me and continue to awe and inspire me every single day. They are some of the most courageous, generous, selfless, positive people that I have ever met. Therapists, doctors, outreach coordinators, teachers, parent support coordinators, ocularists….the list goes on. I’m so lucky to have these people in my life. Without any of them, I couldn’t do any of what I do. I need support and sometimes I just need someone to listen. Because of Oli I have all of that.

3. I feel lucky that because of Oli I have something to write about. Bad reason, I know. But, it’s true. Because of her I get to tell our story. I get to reach out and maybe let someone else, whose been where I’ve been, know that it’s okay. They’re not alone. It’s really crappy at first. And it’s hard and it’s sad, but it gets better. It gets so much better. Even if it gets harder because our kids get older, it still gets better.

4. On that note, I feel lucky that I get to share my story with so many people who don’t have a special needs child. Because maybe they’ll read my story and gain a little bit of understanding and perspective. Maybe they’ll read my story and the next time they see a child in public who looks a little different or who is having a meltdown, flapping, shaking, humming or yelling, they’ll think of my Oli. And then they’ll remember what I have said about my journey. How hard it really is sometimes and that all we want is a little bit of compassion. Maybe they will try not to look at the parents with pity or not judge them because they can’t control their kids. Maybe I’ve reached someone out there and it will make a difference in someone else’s life.

5. Most of all I feel lucky to be her mom because…well, because she is just my Oli. If you’ve met her you know what I mean. She feels everything with a fierce emotion that is so rare. I’m glad to be a part of that. I get to see her face challenges head on and never back down. Rarely does she show fear. She trusts me so much that sometimes it scares me. She loves me so much that sometimes it takes my breath away. And she is so brave, strong, funny, curious, and stubborn that sometimes I just look at her in amazement. How can such a big, sweet, phenomenal personality fit into such a tiny little girl. She reminds me every single day what my purpose is in life and allows me to share this bumpy road with her. She forgives me when I mess up, she forgives me when I have to do something unpleasant to her, she forgives me when I allow doctors to do things that are unpleasant, she ALWAYS forgives me. She always just continues to love me. She might be mad for a little while, but then she will wrap her little arms around my neck, pat me on the back, and whisper “Mom-Mom” in my ear. It’s like she’s saying, “I know it’s not your fault Mommy. I know you didn’t ask for this either. I know that you are just trying to do what’s right and are doing what you think is best for me. I love you and I love that you walk BESIDE me and not IN FRONT of me. And I’m really glad that you don’t feel sorry for us anymore.”

And those are the reasons that I’m so lucky to be Oli’s mom.

I Still Remember How You Made Me Feel

14 Feb

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Despite my negative experience with some of the doctors when Oli was born there was one more nurse who would make a profound impact on my memories of those 4 days in the hospital.

Her name was Sharon and she was my labor and delivery nurse.

She was a little bit older than me with exceptionally long, dark blond hair. She seemed to be just a step out of time with today and wore her bangs in a feathered style around her face. She was very sweet and one of those warm, compassionate people who make you feel like you’ve known them forever.

She encouraged me through out my labor and didn’t even bat an eye when I threw up moments before Oli’s birth.

“It’s okay. Happens all the time.” She reassures me, even though I am completely mortified having displayed my dinner to her and my OB/Gyn not to mention the NICU doctor I worked with.

After Oli was born she let me spend a considerable amount of time with her before taking her to the

nursery. She even apologized when she finally laid her in the bassinet to wheel her down the hall.

“I probably should have taken her down 20 minutes ago since she’s a little early, but it’s so important to bond with your new baby. Besides, she looks perfect.”

Two nights later as I’m sitting on the hospital bed I hear a faint knock at the door. Sharon peeks her head inside.

“Mind if I come in?”

“No. Please, come in.” I’m nervous as she sits down on the end of the bed and am wondering if she heard about Oli. It quickly becomes apparent that she has when I see her eyes fill with tears.

“Oh Shannon. I’m so sorry. One of the other nurses told me about your baby. I just couldn’t believe it.”

“I know. I’m still in shock. Thank you for visiting us.”

I’m trying to control my own tears now. Not just because I am again reminded of all that has transpired in less than 48 hours, but because I’m overwhelmed by the amount of empathy radiating from this woman who was a stranger to me two days ago.

“Do you need anything? Can I help you in some way?”

I just gave her a hug, told her thank you and assured her that it was okay and I would be fine.

I should have told her that the simple act of having the courage to walk into my room, cry with me and tell me she was sorry had done more for me than she will ever know.

I wish I would have known then, how that moment would make me feel 5 years later.

A Young Nurse

13 Feb

imagesCABIVG4B (2)

As Oli began to eat baby food I realized that her GI reflux, which I had been assured would dissipate when I introduced solids into her diet, did not diminish at all. The only difference now was that the things coming out of her mouth and nose were colorful instead of milky white.

When I think about her reflux I remember a young nurse assigned to us in the mother baby unit in the hospital.

It was a few hours after Oli was born and I was finally asleep. The nurse came in to check on us and woke me up indicating that something was wrong with her. I sat up and saw her turning Oli onto her side as she gasped and snorted through a nose full of milk.

“She is spitting up pretty bad. You have to keep an eye on her and keep her on her side. Here, use this to suck the milk from her nose and mouth.” She says as she hands me the little blue bulb I would become very familiar with.

Although this is fairly common and happens to newborns something about the way she looked at Oli that night sent alarm bells ringing through my heart. She had that look in her eyes of a nurse who knew something was wrong, but couldn’t quite put her finger on it. The way she looked at me as she turned and switched off the light said more than her words could have expressed.

I’m concerned about your baby girl. I’m young and intimidated because I know you are also a nurse, but look at me and recognize that something is off.

Of course, I was still deeply submerged in denial and ignoring those alarm bells. I wouldn’t find out until the next day that Oli was blind and I wouldn’t know for another three years that her reflux was linked to another devastating diagnosis.

I just smiled confidently, tucking my covers under my arms as she walked out of the room and assured her that I would watch her closely.

I wonder if that nurse heard later that her instincts were correct?

What about me mom?

7 Feb

“A sister is God’s way of proving that He doesn’t want us to walk alone.” -Anonymous

Apparently I have seriously offended one little person in my house by not writing about her yet. When I picked Kekoa up from school yesterday I excitedly told him that I was able to tell a story about him on a website.

“What’s the story about mommy?”

“I just told people what an amazing person you are and how much you love your sister, Oli.”

At this point I hear a little voice pipe up from the back seat.

My 2 year old Ginger, is not about to be left out.

“Me too mom! You wrote a story about me too!”

She is far to grown up and sophisticated to use silly words like ‘mommy’ and ‘daddy’. We are mom and dad and sometimes, we are Shannon and Seth.

“Not yet Ginger. I haven’t gotten to that part of the story yet.”

“Awwww….I want a story.”

So now I find myself needing to write about Ginger. Although it in no way follows the normal sequence of Oli’s story, I have to tell you about my little princess. She is not about to be left out, let alone not be the center of attention.

This is Ginger.

Ahhhhh….Ginger. Where do I even begin?

Ginger was born when Oli was 2 months away from being 3 years old. I thought that it would be easy to have another baby at this point because Oli was getting a little bit older.

I was wrong.

To describe Ginger as being a difficult baby really doesn’t accurately portray the first 5 months of her life. I had no idea what I was in for when she was born.

She was a terrible infant. She cried all the time. And I do mean ALL THE TIME. Literally. If she wasn’t eating (which she always did) and she wasn’t sleeping (which she never did) she was crying.

Oli had a really hard time when she was born. She is very sensitive to loud noises and Ginger screamed like she was in a special baby crying contest and was intent on winning first prize. I’m sure my neighbors were convinced that I was somehow torturing my newborn.

We found out when she was 1 year old and stopped nursing that she was allergic to milk. She would break out with a rash all over her face every time I gave it to her.(I’m sure she was sensitive to breast milk too.)

Yeah. . .that would have been good to know when she was a baby.

Oli really wanted nothing to do with her. Every time I would try to put Ginger in Oli’s lap or even next to her, she would push her away immediately. I couldn’t blame her. Sometimes even I couldn’t handle her screaming anymore. But by the time Ginger was 5 months old she was much better.

I couldn’t convince Oli to like her though. I’m sure she had no idea what this little loud thing was. She’d never been around a baby before. So, one minute it was just her and Kekoa and life made sense. She had routines and structure and plenty of mommy time. The next minute she had erratic routines, no structure and mommy time usually meant sitting with me while I had a wiggly little body attached to my boob. It took Oli about 18 months to let Ginger get near her and now she loves her. But that was only because of how Ginger approached and treated her.

The personality differences between my oldest and youngest children are striking. They are polar opposites.

Where Kekoa is quiet and sensitive, Ginger is loud and bossy. Kekoa wants to help other people and never strives to be the center of attention. Ginger just wants everyone to cater to her and will do whatever it takes to make sure that someone is watching her. She is constantly singing, dancing, and performing. And if what she is doing is not immediately grabbing your attention she will get in your face and absolutely demand it. And that is exactly how she approaches Oli.

She just grabs her by the hand and pulls.

“Oli! Come play with me!”

(Oli has a lot of trouble standing up by herself.)

“Ginger, you can’t just pull on Oli. You’re not strong enough to help her get up.”

She will not be detered.

“Yes I am mom. See. Look at my muscles!

Come on Oli! Stand up. Let’s go.”

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She has never ever treated Oli like she is any different from anybody else. I would like to explain this away by her age. She just doesn’t understand yet. (She will be 3 in March.) I don’t think that’s it though. Only because I have always watched how Kekoa interacts with Oli.

Kekoa is more reserved with her and always has been. He is concerned that things are done properly with Oli and he is always cognisant of her visual impairment and her mental age. He has been like that since she was born. He doesn’t ever treat her like she is less than, but he is aware that there are things that she just can’t do or needs help with. I frequently hear him tell Ginger,

“You have to put the toys in her hands Ginger. She can’t see them when you just throw them at her! Put them in her hands!”

Kekoa wants to teach Oli things and makes sure that she gets what she needs.

Ginger wants Oli to pay attention to her. Ginger just wants to make sure that they are friends.

I really love this about her. I don’t have a sister so I know nothing about the special bonds of sisterhood.

I see it in my girls though. Despite their differences I see that bond.

Oli is so lucky to have two people who will always stand by her side. One who will make sure that no harm ever comes to her and the other who will make sure that no one ever leaves her out, pity’s her, or treats her differently.

What did I do before Facebook?

4 Feb

“Friendship is born at that moment when one person says to another: “What! You too? I thought I was the only one.”

― C.S. Lewis

As I struggled to understand what the doctors were telling me, looking up every unfamiliar word, phrase, and condition, I was also furiously searching the Internet for other families who had kids with Oli’s condition.

There had to be more of us out there! Where were they? This was pre-facebook when it was not as easy to find people or support.

Finally I stumbled across a Yahoo online support group for families of anophthalmic/microphthalmic children. I submitted a request to join the group explaining that I had a one month old daughter with the condition.

I was silently begging this woman on the other side of the country….

Please, please accept me. Please tell me that you can help and that you understand.

I received an email the next day telling me to follow the link to the online forum. I waited until everyone in the house was sleeping before I went back online.

With the darkness of the house surrounding me I was looking into a new light, a new hope via my small computer screen.

I clicked on the link and walked into a whole new world. A world in which my child was no longer a small minority with a strange condition. A place where I was no longer just one mom alone on this foreign voyage. I had found the hope and the sense of community that I had been looking for.

I read through numerous conversation links and looked at handfuls of photographs of children who looked like my Oli. Beautiful children with positive and inspirational parents who told me not to be discouraged. They told me that they too lived my story. My life, her life, her future was not to be without hope. I could be myself with them. I could be angry, express my grief, my sense of loss. I could tell them about the strange looks that people gave my daughter. I could tell them how annoyed I was when people thought Oli was sleeping because she couldn’t really open her eyes. They understood because they too had the same experiences.

They knew me and they knew my struggles. I never had to pretend with these women. In the months to come I clung to my computer screen in the darkness and welcomed that light. I asked many questions and always received honest and compassionate answers. I found friendship in a most unlikely place. With women I would never meet. Most of them have never heard the sound of my voice, invited me over for coffee or out to lunch. Most of them were just names on the computer screen. But, those women knew me in those early days. They knew me better than some of my closest friends because I told them how I really felt.

I never told them that I was fine.

Growing up with Oli

4 Feb

IMG_1076“You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement. You are here to enrich the world.”
― Woodrow Wilson

I have often wondered what it is like to be a sibling of a child with a disability. I know it’s an adjustment for any child when a new baby is brought into the house. But, what about the child whose life is forever changed beyond just having another little person to live with. It is so much more than parents now being more preoccupied with feeding routines, frequent diaper changes and crying episodes. And it’s more than just knowing that you now have to share mommy and daddy’s attention with a new sister when, well lets face it, you probably weren’t all that thrilled about her joining you. Especially since you were an only child up until now.

Your life changes because now life is riding in the car for hours and then sitting in little rooms with crappy toys and being told to “be quiet” while you try to wait patiently. It’s waiting in these rooms several times a week when all you really want to do is go back home and play with your toys and watch the Cars movie…again. It’s sensing the atmosphere change in your house and feeling the weight of a sadness that you don’t understand but, seems to have followed your sister home from the hospital. The weight that seems to intensify after waiting in another one of those little rooms.

As you get older you start to notice that your sister, who you have waited to play with since she was born, never seems to get old enough to play like you. She doesn’t sit up very well when she does learn to sit up and then she can’t see when you try to show her your newest Lightening McQueen car or your new Hot Wheels race track. Mommy tells you to put your toys in her hands to show her things, but frankly this doesn’t make sense either because then she only puts your new toy in her mouth and ruins it with slobber. She never learns to move around the house which means mommy has to carry her every where. The words “Oli just needs more help” are lost on you when you just want to be picked up and carried around like before. You love your sister but, just don’t understand her. You ask questions and want to know why she is so different than you but, mommy’s explanations that God made her different don’t make sense. Why can’t the doctors just make her better. She is obviously sick and this is what doctors do. Why doesn’t she ever get any better? Why do they keep taking her to the doctor if they don’t fix her?

As you grow and change, learn your letters, learn to count and tie you shoes you try to show your sister so she can learn too. But, your attempts are to no avail and she doesn’t seem to get it. She won’t talk to you and now you are drifting farther and farther apart. She starts to do strange things like flap her arms, hum loudly and shake her head. You try to play like her to connect with her in some way but, what seems to amuse her is just boring to you.

You never give up though. You never give up trying to form that connection with her.

She is your sister despite your differences. Mommy and Daddy have always taught you to love her and help her and that is exactly what you do. Not so much out of a feeling of obligation but, because that is just who you are.

Kekoa you are such a special little boy. I love that you just love her and even though it’s been 5 years since everything in your life changed, it has never dampened your spirit or your love of your family and life. Please keep your kind heart and don’t pay any attention to people who may try to lead you down a different path.

You, my son, are going to change the world.

The doctors opinion

1 Feb

“One person’s craziness is another person’s reality.”

― Tim Burton

Continuing on our scavenger hunt, the woman from the blind foundation gave us another name. A pediatricians name. Oli had already seen one since leaving the hospital, but we were not impressed.

The opthamologist told us to make sure that Oli’s pediatrician drew labs to check her pituitary gland. She told us that she knew kids with microphthalmia commonly had abnormal pituitary glands and that it was imperative to check the labs.

Her first pediatrician just blew me off with an annoyed look when I asked for the labs to be drawn. Apparently this was a common attitude with this particular group of pediatricians.

Don’t we need to check her pituitary labs to make sure she doesn’t need medication? Don’t we need to check her growth hormone?

No. We don’t need to check them right now. We’ll just watch her and see what happens.

Watch and see what happens? She’s not a science experiment or an action movie! I don’t want to just watch and see what happens! I want answers!

We will just wait until after you see the geneticist and see what she says. I’ll wait for her recommendations.

There was only one pediatric genetic doctor for the entire Las Vegas valley. The waiting list to see her was 6-9 months long.

Don’t you think we at least need to do an MRI to take a better look at her brain? Don’t you need to draw chromosomes? I’m sure the geneticist will want chromosomes drawn. What about her kidneys? The doctors at the hospital said that you should refer us to recheck her kidneys.

No. I’m not going to order any tests.

By this point she was really annoyed with me for questioning her. She knew, that I knew, that she was uncomfortable taking care of Oli. She had no idea what to do for her.

I left that appointment feeling frustrated and bewildered that a doctor wouldn’t want to look further into what was going on with my daughter. Why didn’t she want to help her? Now what?

Then we went to the open house at the blind foundation and received the name of the perfect pediatrician for us and for Oli.

Dr. Rosemary Hyun.

The day of Oli’s first appointment she came in the room and sat down.

How are you doing?

(You can guess my answer.)

I’m fine. Thank you.

I’m glad that you were able to meet another family with a child like Oliana.

Yes. The mother of the boy gave us your name. We weren’t very comfortable with Oli continuing to see the first pediatrician we scheduled.

I’m glad you’re here. Let me just take a quick look at her and then we will discuss what tests need to be ordered and if there are any additional things you want ordered.

She was asking my opinion? Really?

I was so surprised. This doctor was actually considering what we needed as her parents. She was thinking like a parent herself. What would she want to know if it was her child. I probably don’t even need to say this but, for a doctor, this quality is very rare.

After she looked over Oli carefully she began to write down a list of tests and labs to be ordered. She asked us if we needed anything else. Then she handed us the slip of paper detailing everything that she had ordered.

Cardiologist appointment for an echo.

Endocrinologist appointment for labs.

Urologist appointment for her kidneys.

MRI of her brain.

Lab appointment to draw her chromosomes.

A follow up appointment with her.

A referral for the geneticist.

It seemed like an overwhelming amount of appointments. Especially, since I was used to seeing the doctor only once every 3-6 months with my son.

But I needed answers.

As I walked out of her office a startling realization hit me.

Was this how the families of my patients in the NICU felt when I sent them home?

When I discharged them from the hospital with a list of appointments, doctor names, medications, medical equipment, and specific feeding times.

Was this how they felt when I carried their baby through the sliding glass doors of the hospital, handed them the car seat and 15 plastic hospital bags containing all of the things they needed to keep their child alive and said “Good luck”!

My experience with Oli began to give me a whole different perspective and a new found respect for the families of my NICU babies.

Fix her

21 Jan

“Once you had put the pieces back together, even though you may look intact, you were never quite the same as you’d been before the fall.” -Jodi Picoult

I used to get so mad when people would try to talk to me about “fixing” her.

They would say things like “You never know what the future holds. Someday they will invent a way for her to see”. I didn’t want to hear any of it. I knew they were just trying to give me hope and trying to get me to see the rainbow at the end of all this but, I couldn’t hear it.

I again, being a –worst-case-scenario- girl, wanted to make myself believe that she would never be able to see. Secretly, this was only part of me.

Secretly, I wanted to have hope.

Let’s face it. I am a nurse. I wanted them to give her some kind of magical pill or hook her up to some kind of machine and fix her. I just wanted so desperately to wake up one morning to a baby with vision. I wanted someone to tell me what her future looked like and that she would be okay.

I had that tiny seed of hope for a little while. Until one day I didn’t.

Until one day the growing list of things wrong with her outweighed any hope I had of her living a “normal” life and the disappointment became too much. Until one day, another doctor, another specialist, another therapist unknowingly squashed that little seed of hope like an insect they didn’t even notice. They never noticed that little seed of hope that I had for her future.

Let’s talk about all of those specialists.

Let’s talk about how to approach new parents of a special needs child. First of all, if you’re the pediatrician delivering devastating news to parents about their newborn, you should probably wait until both parents are present in the room. Not tell the new, already hormonal mommy by herself in the hospital room. You are changing somebodies life forever. You need to be compassionate and gentle. You need to have some kind of emotion.

Also, sometimes parents need a break in between all of the bad news. You can’t just sit parents down with a newborn and give them a 4 page list of everything they think, might be wrong with her. I don’t know. Break it up a little. Give us a coffee break. Offer us some pastries. By this I DO NOT mean send us back into your tiny overcrowded waiting room where we have already been sitting for the past 2 hours. Your waiting room is not that cozy and I do not enjoy your uncomfortable chairs or your rude receptionist. Obviously I’m not exactly sure how this should be approached with new parents. But, I do know this. They way it was done with my husband and I wasn’t conducive to acceptance.

thecrumbdiaries

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