Tag Archives: love

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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Flies, Trash, and Dead Bodies

25 Feb

“Like a corpse left in a garbage dumpster in the middle of summer.” -Sin City quotes

Right around the time that Oli turned 1 and got her first pair of prosthetic eyes, my mom moved in with me to help with the kids.

Which means she moved to the town of. . .Pahrump.

I wish I could tell you that it was a quaint little cozy city with white picket fences and the scent of fresh flowers in the air.

It was more like a city from Stephen King’s book Desperation with trailers sporting rotting sideboard and the scent of dead bodies in the air.

When we moved there we were sold on the idea of Parump becoming an up and coming city. With the housing prices sky rocketing in Vegas, we thought it would be an excellent idea to purchase a house in another town and wait for their market to increase. We thought there would be an influx of buyers recognizing the beauty and the quiet peace of living in the middle of the desert.

At least. . .this is what my realtor told me.

“Buy here! Buy now! You won’t regret it when your house doubles in value in a year!”

It didn’t work out quite like that.

Apparently everyone else spotted what I missed when touring Pahrump. The poverty, high rate of meth use, decaying landscape, trash, and a disturbing amount of flies. I guess the fact that Sherry’s Ranch was just down the road didn’t encourage families to move there either. Yes, this is a brothel.

What in the hell were we thinking?

And then I asked my mom to move there?

Granted we technically didn’t live in Pahrump. We lived in a track community about 5 miles outside of town.

It wasn’t far enough. The trickle of garbage, fly larvae, and stench of unbrushed teeth eventually made it’s way right to my front door.

The housing market in Vegas started on its downward spiral the year after we moved, which subsequently really plunged the value of my house into the toilet.

After my mom moved in with us she began to recognize that my optimism when describing my city was really just an act of desperation to get her to move to Nevada.

I used to tell her “It’s really not that bad. You’ll get used to it.”

I think she wanted to believe me at first until one afternoon she told a coworker that she had a blind date that night. The woman looked at her with hope and jealousy in her eyes, and sincerely asked “Does he have all of his teeth?”

That was the last straw for my mom.

It also didn’t help that her date turned out to only be in possession of most of his teeth and then offered her a sad plastic rose at the end of the evening.

She stayed though. She didn’t hightail it out of there fleeing like a woman who is being chased by smelly, aging, toothless men.

It did, however, end her dating career in Pahrump.

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My Special Needs Mother Hat

18 Feb

“A woman is like a tea bag; you never know how strong it is until it’s in hot water.”
― Eleanor Roosevelt

I talk a lot about my journey to obtain my special needs mother hat. I don’t know why I use this term. I guess it just gives me a good descriptive picture in my head and explains a major role I play.

To me, this hat looks different than a mother hat. My mother hat fit well the first time I put it on. It was easy to wear, simple, elegant, and light. It was beautiful from the beginning and did not tear easily. When it did, I could take it off at night and stitch up any holes it acquired during the day. My stitching was never loose, came apart or was crooked. It always came back together nicely. It rarely fell off and never seemed heavy. I was proud to wear it and frequently showed it off. I enjoyed this new hat tremendously and was very reluctant to turn it in for my special needs mother hat.

When I got this hat it was WAY too big. It fell off all of the time. Sometimes it just blew right off my head. In the beginning I forgot that I had it and a big gust of wind would come along and POOF! Gone. I would have to go chasing it down the street. Sometimes I threw it to the floor in a moment of rage, frustration, or grief. And sometimes I just tried to leave it on the counter at home. I tried to pretend that I didn’t have it and that it wasn’t sitting there waiting to adorn my head like a 1000lb weight. It was extremely heavy. It had all kinds of straps, buckles, and ties attached to it that I couldn’t figure out. It had random flowers on it with names that I couldn’t pronounce. It was uncomfortable and became worn out looking. Rips and tears began to decorate the sides and no matter how hard I tried to stitch it up, my stitching never fixed the holes. They were loose, crooked and simply came apart by an unexpected tug in the wrong way. The whole hat would just fall apart. I would carry my hat in pieces back home and painstakingly try to put it all back together. At first it seemed destined to be big, ugly, uncomfortable, and prone to making me feel like an outsider. It seemed nobody had a hat that looked like mine.

After I wore it for a while, I began to notice other mothers whose hats looked like mine. They were worn and tattered, but had been repaired with beautiful hand crafted stitching and appeared loved and cherished. These mothers looked at me in my hat and smiled a knowing smile and pointed to their heads. “See. I’m proud of my hat. It may appear complicated and worn out to you, but to me it’s beautiful. Your hat will be beautiful too one day.”

Slowly I began to notice new things about this hat that I hated at first. I was learning to pronounce the names of the flowers on it and figuring out the buckles and straps. It wasn’t so big anymore and no longer blew unexpectedly off my head. It began to fit better as each day I grew a little more confident in my role. Every once in a while I still throw it to the floor, but now my reasons are different. It still gets ripped and torn, but I am learning to sew it back up and now my stitches hold it together. It doesn’t fall apart so easily and my stitches are straighter and stronger. I’ve learned to love each and every rip, tear, crease, and stain on my hat because each one has a story. A moment in time and a memory of where I have been and what I have gone through. It isn’t so uncomfortable now and it doesn’t make me feel like an outsider. Now it makes me feel like part of a group. A group of mothers with special hats and special roles that we love and feel honored to have. Now I’m not ashamed of my hat and I never try to forget it on the counter. I walk out of my house each day with my head held up high. Proud to show off my journey with my special needs mother hat.

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Please Don’t Let Her Arm Fall Off

16 Feb

“Sometimes beautiful things come into our lives out of nowhere. We can’t always understand them, but we have to trust in them. I know you want to question everything, but sometimes it pays to just have a little faith.”
― Lauren Kate, Torment

Fortunately because my two small children were in the car with us that cold day in January it ensured that my husband’s enthusiasm for an adventure took a back seat. We made it to Oli’s surgery appointment unscathed, unstuck and virtually un-traumatized.

It was scary riding with a driver who was unfamiliar driving in the snow on gravel roads in the middle of the desert, but Seth was cautious. We got to the hospital 2 hours late to her appointment. I had gotten a hold of the surgeon when we realized that we were going to be late and she told us to go ahead and come whenever we could.

They prepped Oli for surgery and the nurses whisked my baby girl off to the operating room shortly afterwards. We were assured that Oli was in good hands and were sent to the waiting room.

I had never been the parent of a patient before Oli was born. One time I had to take Kekoa to the ER when he was 4 months old because of a high fever. We were only there long enough to make sure he didn’t have an infection and then left.

This was nothing like that.

I knew they were going to be cutting into my baby, however minor the operation was.

THEY WERE GOING TO CUT INTO MY BABY!!!

I had been involved in lots of surgeries with babies before Oli, but none was my child. My heart went out to all of the parents who had sat in those little plastic chairs before me.The parents that I myself, had sent to the waiting room when I was the nurse on duty the day of their child’s surgery. Many times I spoke the exact same words spoken to me that morning, “She’s in good hands. Everything will be fine.”

Of course there are no guarantees. I knew that. I was terrified.

The few hours it took to perform the operation and get Oli into the recovery area were some of the longest hours of my life. Oli has had a few other surgeries since then and it never gets any easier.

Remember I am a worst-case-scenario girl.

I worry about everything from a complete power failure when my girl is still on the ventilator and unconscious down to worrying that the nurse didn’t properly swab her IV port before injecting medication into it and subsequently she gets a terrible bacterial infection and her arm falls off.

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It’s awful!

Luckily none of those things has ever happened.

I want to trust people taking care of Oli. I really do. Most of me has to or else I would drive myself crazy, but this is my baby girl. I can’t trust them completely. I don’t think any mother ever does.

Moms worry about our children the moment we realize we are having them. It’s not any more difficult, I don’t think, when you have a child with special needs. We are just given more opportunities to worry. And we are given more opportunities to trust people and have a little faith in them. Sometimes they let you down, but most of the time they don’t.

Most of the time my imagination is far worse than reality.

Good thing!! Otherwise my girl would defiantly be missing a few limbs by now.

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An Adventure With Seth

15 Feb

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The morning of Oli’s fundoplication surgery (reflux surgery) I awoke in the darkness. I turn over and glance at the clock.

Uggghhh…4am. We had to be at the hospital by 6:30 and it was an hour drive. I shook Seth awake and then got into the shower. A few minutes after I got in Seth knocked on the door.

“You’re not going to believe this Shannon. There was a snow storm last night.”

“What?” Snow in Las Vegas. Sounds like no big deal right? The first time I saw flurries in the desert I laughed that they would even have the nerve to call the slightly thicker rain drops “snow”. That wasn’t snow. These people had never been to Iowa. I had about the same amount of trust in my husband and his knowledge of snow as I had in the people of Las Vegas. He was from Hawaii.

I knew that it was probably just cold and raining. At most it might look like snow falling from the sky, but would melt once it hit the ground. We were in no danger of missing my daughter’s surgery appointment. I forgot that in order to get to the appointment we had to drive over the “pass”.

Pahrump sat higher than Las Vegas and in order to get there we had to drive over a mountain at 9,700 feet elevation called the pass.

As we left the house I wondered if we really were going to make it. Snow was actually sticking to the ground. I had heard when we moved to Pahrump that the pass occasionally closed when it snowed up there, but that it only happened maybe once a year. Surely it wouldn’t be closed the one day that we absolutely had to get to Vegas. Surely our luck wasn’t that bad.

It was.

As soon as we reached the base of the mountain I could see police lights directing people to turn around and go back.

I looked over at Seth who was driving. “What now? It’s going to take a month at least, to get another surgery appointment.”

“We’re going. I will get her to this appointment.” He says with determination and a look of excitement in his eyes.

Oh no. I’ve seen that look before. That look that comes from a man who loves off-roading and driving through the back desert.

“Are you serious? The gravel roads are going to be bad. I think we should just call and cancel.”

“Nope. Don’t worry. I’ll get us there. No problem.”

I am very worried.

Seth likes a good adventure and his adventures usually end up with us being stuck somewhere. I have been on many of these “adventures” with him. I have been stuck in the desert overnight, in the mud, with nothing to drink but cheap beer and coyotes circling us looking at my little dog like a quick and easy meal. I have been stuck 5 miles from the lake, with a flat tire and no jack, no one around for miles, for hours in 110 degree heat, with nothing to drink but cheap beer. Don’t worry. We always had beer.

These are just a few examples. Others include motorcycle trips in freezing weather and extreme heat when I have been totally convinced I was going to die.

I know Seth’s idea of an adventure.

This could end badly.

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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.

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You’re probably not a special needs parent if….

2 Feb

1. You have money.

2. You drive a small car.

3. You drive a nice car.

4. You don’t know what IEP stands for.

5. You don’t have a small panic attack, cringe, or cry when you hear the word IEP.

6. You go out to eat at restaurants and stay longer than 20 minutes.

7. Going out to eat does not mean going through the drive through at McDonalds.

8. You regularly enjoy meals without someone spitting a mouthful of chewed mush all over your shirt and then clapping and laughing. This is not done by your baby.

9. Your purse doesn’t weigh 5,000lbs and include things like emergency medication syringes, extra-large diapers, special snacks, multiple packs of boogie wipes, or weird toys.

10. Your wallet isn’t bursting with business cards from doctors, specialists, therapy places, schools, and support groups.

11. You never get emails titled “Sale! Feeding chair only 1 million dollars (regularly priced at 5 million)”

12. You don’t schedule your day based on what kind of mood your child is in.

13. You can go shopping with your children and never end up back in the car crying.

14. You’ve probably never been bitten, scratched, spit on pooped on, peed on, or thrown up on all in one day. Unless you’re a nurse.

15. Poop on the walls is DEFINITLY an emergency.

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Why would He do this to me?

1 Feb

“We love the things we love for what they are.”

― Robert Frost

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I really should have put this picture at the beginning of my story. This is Kekoa and me in the background. Yes, I was about to cry when it was taken. The picture accurately emphasizes and portrays everything that is me. When I look at it I see someone who looks absolutely terrified of the reality that has just come out of her body. Why God would choose to give someone like this a special needs child is beyond me.

I mean look at me.

I was a wreck and he was fine.

When we got home from the hospital my husband loaded the pictures from the delivery onto the computer. He pulled up this one and burst out laughing. “Look at your face! You look like you are convinced that the nurse is really a child predator and is about to run off with your baby.”

I came over and looked down at the computer screen. Yep. That is exactly what I was thinking. “Don’t laugh. I just love him so much.” I try to explain very near the brink of tears. How can he not understand? I mean this little person just came OUT OF MY BODY! I made this little guy and he is perfect. It all just became so real. When they’re in your body it’s just a faint idea. Especially when it’s your first. Once they actually come out it’s a whole new ball game.

I think I look the way I do here for a couple of reasons.

First of all, I was totally mortified by the whole child bearing experience. The gush of body fluids, squishy stuff and baby from my body was beyond embarrassing.

How would my husband ever look at me the same?

Second, I really hadn’t given the whole idea of baby = with you the rest of your life, a sufficient amount of contemplation. I just wanted a baby. But once I looked into his eyes and felt a kind of love that I had never experienced before, I knew that I was in trouble. My heart felt like it was bursting with love and breaking with fear all at the same time and either way I looked at it I was in danger of literally loving this little guy to death.

Once the nurse placed him on my chest, cleaned him off, and then took him away to the warmer to wrap him up and snap this picture I was totally and completely smitten.

I also started feeling other things that I had never felt before. A fierce protection of my little boy that was almost crushing when the nurse took him from my arms.

In the picture I am looking at the nurse like “OMG you are totally going to break him. I do not trust you at all. Give him back. Give him back before I cry.”

In what world does it make sense for Life to give this kind of mom a special needs child? I couldn’t handle the thought of raising this little guy, who was completely normal.

Can you imagine the picture of me after I found out that Oli was blind?

Or maybe this picture explains completely why I was given a special needs child…

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8 things I wish I would have known when Oli was born.

26 Jan

“None of us is as smart as all of us.” Eric Schmidt

1. I am my child’s parent 1st.

I am not her therapist, or teacher. I am definitely not her drill sergeant. It’s okay to just be her mom sometimes. Of course, I still have to work with her at home. But, I no longer have that tremendous amount of guilt when I just cuddle her instead of doing physical therapy exercises. I don’t feel guilty when I carry her up the stairs once in a while instead of forcing her to walk up them when she doesn’t want to.

A woman from the Texas School for the Blind and Visually Impaired told me this when Oli was 4 years old. It was the first time anyone ever gave me permission to “just be her mom”. I will never forget that because it was the gift that I had been aching to receive since the day she was born.

2. Think about today.

Boy, does this one catch me up sometimes… I don’t need to worry about the things that Oli will or won’t do 10 years from now. (I really like to do this!) It just weighs me down when I do. I have realized that she can do what she can do today and that is just fine. I really can’t tell you what her future will look like but, for right now, what she is doing is perfect.

3. Don’t be afraid to be Donald Trump

If a doctor talks about Oli while she’s in the room like she is not even there, I fire them.

If a doctor is not compassionate and does not realize the he/she is treating my whole family and not just my little girl, I fire them.

If a doctor or therapist seems annoyed that my 2 year old is crying and my 7 year old keeps interrupting because he wants me to look at his latest accomplishment on his Nintendo DS game, I fire them.

These doctors and therapists have no idea how many times I have dragged my other children to these appointments. How many hours of their short lives have been spent in waiting rooms and in the car driving to different appointments. If they cannot respect the fact that my other children are also affected by Oli’s disabilities, we find someone who does.

4. Google is my friend.

5. Laughter is an even better friend.

6. I probably have Post Traumatic Stress

Oli’s wonderful pediatrician in Las Vegas, Dr. Hyun, told Seth and I this while we were sitting in her office one day.

It could have been our red swollen eyes, lack of matching clothes,all around disheveled appearance and the “Holy shit! What just happened?” look on our faces that tipped her off.

It was the first validation I received that all the craziness in my head had a diagnosis.

7. Functional not Perfect

So many therapists would spend hours trying to get Oli to do things perfectly. She was never successful because the reality is, no child does things perfectly when they are just learning to do something. Special needs or not.

Oli’s new physical therapist, Cathrine, was working on trying to get Oli to stand up from the middle of the floor. (We had been working on this for a couple of years with different therapists.)

She told me on her first visit, “I don’t care how she does it. I just want her to be able to do it. It doesn’t have to look pretty.”

And guess what….Oli did it!

8. Special = Expensive

Having a special needs child is very very expensive. I had to claim bankruptcy when Oli was 6 months old because of the mounting medical bills, co-pays, and things our insurance didn’t cover.

Very Special = Very expensive

(It’s okay. I’ll still take very special, even though it means I’m broke all the time.)

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Would she ever see a sunset?

25 Jan

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside it’s chest.” -Debra Ginsberg

The next day the doctors performed a few tests on Oli. One was a CT of her face to determine if she had any eyes or any abnormalities of her brain. Another was an ultrasound of her pelvis to determine if her kidneys were present and normal. And the last was a hearing screen.

It was so hard watching the nurse wheel my baby out of my room that Saturday morning. I knew in just a few hours the results of those tests would be delivered to me and would determine her life, quality of life, or her death. I couldn’t think about the outcome of those tests anymore but, I couldn’t not think about them either.

Would she be able to see her handsome daddy’s face, admire a sunrise in the mountains, or see a sunset over the ocean in her daddy’s beautiful Hawaii?

Or would she spend her life in darkness.

Was her brain normal?

Or would she spend her life confined to a bed, unable to ever care for herself and perform daily activities.

What about her kidneys?

Would they be missing or badly deformed and non-functioning?

Would she spend her life attached to a dialysis machine multiple times a week for hours at a time?

Would I be forced to administer numerous medications with harmful side effects in order to keep her alive?

Was she able to hear her sweet brothers voice when he called her his “bee-bee” and kissed her head?

Was she able to hear how many times I had whispered “I love you” into her ear?

Did she hear how many times I told her I was sorry that this had happened to her?

Did she hear me tell her that I would have offered God anything if He would allow me to trade places with her?

Did she hear me tell her that I wished it had been me that had been born blind and not her?

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