Letter to Abby

Dear Bug (Abigail),

The day your father and I found out you were blind we were crushed…I was lost.  I couldn’t imagine a world without sight, a world in total darkness.  I love the light. I love the setting sun, the rising moon, I love the soft candle light glow on a birthday cake; all these things bring me joy and happiness.  I did not want to believe that you’d never, in this life time, get to experience these beautiful things.  I cannot tell you how many nights I’ve cried in prayer trying to understand why this has happened to you.  The warm smile on your face brings so much joy to my heart and it breaks it all the more, knowing you don’t see the same smile on my face.

Words to describe how I feel on a daily basis would be; anger, happiness, sadness, joy, exhaustion, disbelief and faithful. However, the word to tell you best how I feel is love. Abigail, I love you so much. You are such a beautiful and wonderful baby girl. You are always smiling and talking, I like to think you’re imagining what your father and I look like and you are picturing us as angels.  It is only when you’re laughing for no reason; I begin to think you might be seeing us as funny looking clowns or make believe creatures.  You are truly a sweet little girl.

I just want you to know, Abigail, that Heavenly Father does not make mistakes. Your blindness and what other problems may arise are how you’re meant to be. He knows what you can handle and if you could not rise above this challenge, He’d not have sent you to us this way. You have a purpose honey, whether it’s to touch peoples’ lives, or to be a tool for a miracle, He has a plan for you.  Even now, as I feel your little brother kicking and squirming in my womb, I know that you’ll be the perfect big sister for years to come.

This world is such a glorious place to look at, but you’re going to have such an advantage over those of us with sight. You’ll enjoy things we take for granted such as taste, smell and touch.  Now, as an infant, the smell of my perfume causes you to nestle deep into my arms for comfort; the touch of your father’s five o’clock shadow lets you know he’s there and brings a smile to your face and the sounds of our voices rock you to sleep. You are definitely not what we imagined you would be like. No, my sweet daughter, you are so much more. You are a tender and sweet spirit sent to love and to teach us, your young mother and father, things we would never have learned without you in our lives. 

Abigail, I promise to be your eyes for as long as needed.  I’ll be there to capture every moment for you and to describe in best detail how everything looks. However, you will have to learn and it will be hard. I pray that you’ll overcome this trial in your life and that you will learn to use it for good. I hope that you will not always depend on me to be your eyes and that you will do your best to live in this world and go to college and have a family. Your life is only going to be as normal as you choose it to be.

I know it will be years down the road before you read this letter and fully understand it. Hopefully it’ll fill you with hope, joy and ambition.  I pray for a miracle… that maybe, just maybe one day you’ll see. However, for now, you are miracle enough for me. I love you with all my heart and my only wish right now is that you’ll always know how much I love you.

Love,

Mom

A Miracle 

When Abigail was born my heart was filled with such joy, and so many other feelings that can only be summed up with two words… Unconditional Love!  

When I fell in love with Jonathan, I couldn’t believe I had such strong feelings for him, and I was sure I could never love anyone as much. Then almost a year after we were married our angel Abigail Cindy Lee came into this world. Her eyelashes were long and beautiful…and her toes and fingers were delicate and soft and well she was perfect! She IS perfect! 

Every day since she was born, my little Abby has been a shining light in my life. On the worst of days it only takes her smile and the light in her eyes to cheer me up, and on my best days she’s the icing on the cake.

At three months I noticed she never seemed to be looking at anything or anyone. My mother was concerned for Abigail and kept asking me if I noticed something was wrong. Abby was born three weeks early and so I assumed she’d catch up. However, as I read and researched more about infant eye development, I learned that she should have been able to at least see in front of her from four weeks and on. I began to worry, but prayed that things would change by her four month check up.

When the time came our doctor evaluated her and as always was impressed with her rapid growth and bubbly personality.  I mentioned to him our concern for her eyes and he suggested we go see an eye doctor. A couple weeks later I received a phone call saying Abigail’s appointment would be for May 16^th. At the end of April she was officially five months and I began to see that not only was she not seeing my husband and me, she wasn’t even reacting to light. I called and called the eye doctors to try and reschedule for an earlier date. I was told over and over again that they were booked and it wasn’t going to happen. 

Well, God must have heard my prayers because we were put on the cancellation list and were the only ones on the list. So when someone cancelled their appointment we got bumped up to May 7^th. 

We had one week until her visit and each and every day a still small voice would tell my heart that Abigail was blind.  I would ignore it, but would eventually find myself in tears when my husband walked through the door. He kept reassuring me that nothing serious would be found. But in my heart I knew that was not true. 

The morning of May 7^th, 2010 came and we anxiously prepared ourselves for the appointment. We got Abby dressed and her diaper bag packed, and we packed our hearts and souls with faith and prayers.

The wait was not too long and Abigail was asleep for most of the initial check up with the nurse. The doctor finally came after what seemed an endless wait. She had me sit in a huge chair and hold Abby as she made noise and tried to get her to follow a toy. Then the doc shined a bright light in Abs’ eyes and as I watched, what I saw confirmed what I felt. Her eyes wouldn’t even blink and her pupils did not even dilate in the slightest. I knew my little angel girl was blind.

Some eye drops were put in her eyes, so her optic nerves could be seen. We had to wait thirty minutes for the drops to take effect and dilate her pupils. Once we went back the doctor looked deep past Abby’s ocean blue eyes as if she was searching for buried treasure. Dr. Kathy sat back in her chair sighed, then started to scribble like mad on her chart. I looked at Jon, who was looking at me with that same look which seemed to say “Oh no”. After a few silent moments the doctor told us that Abigail’s optic nerves were ten times smaller than usual. She called it Optic Nerve Hypoplasia and that it would be a struggle for the rest of Abby’s life.

I was shocked at the lack of information she was giving us. This woman did not want to be the bearer of bad news. Jon pressed her with questions over and over again to try and understand what ONH was and if Abigail could see. After ten minutes of drilling Dr. Kathy we discovered that Abs was blind and that there was little chance of her gaining any sight. 

Shock set in and acted as an umbrella, preventing any tears from touching me. We were also told that several other problems could come along with ONH and that Abigail would need an MRI to scan her brain. I felt certain that the MRI would come back perfect. After all, aside from not seeing, our daughter was bright and bubbly.

It only took two weeks for the MRI to be scheduled. We had to be at St Luke’s Boise at 9:00am sharp. We got there at 8:30am. After registration we were taken to the sedation area for children. There Abs’ vitals were checked and she was evaluated by a doctor. 

All the nurses loved her! The kept commenting on how beautiful she is and what a happy baby she is. Lying on the hospital bed and in her little hospital gown, I saw for the first time that my baby was not a newborn anymore. The nurses smiled as they rubbed special “numbing” cream on Abby’s hands and feet so they could thread a needle in for fluids and the sedative.

The cream had to sit for thirty minutes for it to take effect. It stayed on for about forty-five minutes.

 Jonathan and two nurses held Abigail down as the RN prepared to thread the needle and line. Abs laid there smiling as if they were playing with her. Once he RN stuck Abby’s foot, Abs began to scream and tears flooded her face, running down her little neck. My heart broke and it took all I had to not tell them to stop. The needle wasn’t going through so they had to go for her hand. I left the room but as I heard her cry I had to go back in and be there for my baby. I rubbed her head and sang to her as the nurse tried a second time to thread the line in my daughter’s little vein. Finally it went through and the worst was over.

After Nurse Danny strapped Abigail’s hand to a pillow and secured the line, I picked my baby up and held her close to me. I sang her favorite songs, and caressed her wet cheeks, until she fell asleep, pressed warmly to my chest. Danny came back in and said that MRI was ready for us, and commented at how much of an angel Abs was sleeping in my lap. We laid her on the hospital bed and Jonathan and I walked hand in hand down to the MRI area. 

We followed the nurse into a room where we watched her give Abigail the sedative. I saw in my husband’s eyes a deep love and concern for his daughter, his little bugaboo. The MRI team came in and said it was time to take her and that Jon and I would have to wait in the waiting room.

As we walked out my heart was screaming to me to follow them. Jonathan suggested we head down to the cafeteria to eat and pass the time. Sure enough after we were done eating it was already 11:30 am, only thirty minutes left at the least. We walked back up to the waiting room and started watching TV. It seemed we had only been there for five minutes, when I looked up at the clock and noticed it was 12:10pm. 

I heard a soft little whimper and I knew it was my baby. I jumped up and Jon and I walked out and there was Abigail, fast asleep, singing her usual tired sonnets. The nurses told us that she did great and again said what an angel she was. When we got back to the sedation and recovery room I held her once again close to me so she could my heart beat. I wanted her to feel and to hear the love I had for her.

Nurse Danny was giving us the low down of the side effects of the sedative they used. She said that Abs would be tired, listless, and would sleep all day. Danny assured me that Abigail would not be herself until the next morning. Well, Nurse Danny had to leave and another nurse named Peggy came in to take over. 

Nurse Peggy continued to say the same things. And after waiting forever for Abigail to wake up she gave us a little two ounce bottle of sugar water to feed Abby. After the water our daughter was awake and going full throttle. She was kicking her feet and smiling. Instantly she wanted to sit up and play with her toes. Nurse Peggy looked at her and simply said, “Huh, that’s not normal”.

I thought of course it’s not normal, my daughter is exceptional. We were discharged late in the afternoon, and went home with a happy baby. All night, she played, talked and giggled as if she had never been to the hospital at all. I eagerly awaited a phone call from her doctor with the results of the MRI. It wasn’t until the very next day, Friday, May 7^th, that I got the call. It was from Dr. Kathy, the eye doctor.

She said that Abigail had Septo Optic Dysplasia; a disorder that came along with Optic Nerve Hypoplasia. Apparently, there were several areas of her brain there were underdeveloped, and one part, that sends the messages from her brain to her eyes, wasn’t even present. I was told that Abigail would need to see a pediatric neurologist and an endocrinologist. 

The pediatric neurologist is to determine the severity of her blindness and what chances her optic nerves have of developing. The endocrinologist is to follow her through her childhood and watch her growth and development. Children with SOD often have several disorders which causes handicaps and mental disabilities. She also has a chance of getting some form of children’s diabetes that causes her to constantly be sick and not able to go outdoors. We won’t know the extent of everything until those two doctor appointments. Still, the information was twice as hard to take, as when we heard she was blind.

Through all of this Jon and I were praying for a miracle. I was angry with God, because I thought after everything thing I went through, that my children would at least live a normal life. After the first appointment I was angry and after the MRI results I was even angrier. 

Where was our miracle?! Well, last night, as Abigail laughed and played with me, I looked deep into her bright blue eyes and saw her beautiful spirit. I knew right then, that she was our miracle. I know that because of my past, I will have the strength, the compassion and the love to be the mother she needs on this earth. 

My only question I have for God is; what does He see in me to charge me with such a valiant spirit? Only time will answer that for me. For now, I am going to love and cherish Abigail, my miracle.

Our Itty Bitty Life

  A lot is happening right now. We are busy raising our daughter and making a living. Jon is still working full time with Spring Creek and is starting school in the fall! He'll be done as fast as this first year has gone by…too fast! We are pregnant with our second child and are WAY excited! Our little family is certainly growing! 


Here are some pics of Abby and some ultra sound pictures.

Now the New Edition!

ONE OF THOSE DAYS

Today was one of those days, when you sleep in a little too late and your mind is in a haze.

You barely make it out of the room so with feet dragging; you get to work and grab the broom.

The baby starts to fuss, rushing to feed you stub your toe, and your husband’s not surprised you cuss.

He gives you an endearing grin, as you begin to feed, seeming to say smile and lift your chin!

There are errands to run and places to be, but oh so little time and a babe tired and fussy.

Just as you get to your front door, you soon realize, you’ve everything but what you left for.

By now your darling hubby, sadly, has left for work, and you’re doing it all, holding the baby.

You have so much to do, but your little one doesn’t want to do anything, but be with you.

Dishes are piling in your sink, looking around you wonder, “What would my mother think?!”

The kitchen needs swept, while in the fridge, there’s old food your husband insists be kept.

You’ve tried to lay the baby down but she cries, so you have to pick her up and dance her around.

It is five o’clock and nothings been done, so you turn on Oprah and pop corn for soap re-runs.

Another amazing woman is on O and you can’t help but wonder, where in you, did she go?

Frustration is building inside, and dismayed by your lack of work today, you heavily sigh.

Your husband get’s home from a long day, and the house is a mess and your hair is array.

He gives you a gentle peck on your cheek and takes the baby, knowing it’s been a long day, or week.

Going to the messy kitchen to make dinner, you’re sad and discouraged, wishing you’d done better.

While dinner cooks you wash a few things, you pause and stare, upset at the tears your emotions bring.

Oh, Heavenly Father, you softly cry, without you here in my life, I don’t know how I’d get by!

After super you’re ready for bed, but there’s so much left to do, before you rest your head.

With the kitchen neat and tidy, baby and dad asleep, you gratefully slip into your nightie.

You pray once more to God above, sadness weighing you down, not thinking you’ve done enough.

A weight is sitting on your mind and heart; you didn’t fulfill your role, or do your part.

Finally you drift off to sleep and dread the day to come, knowing your chores are head deep.

Someone looks down upon you, and gently says, “My daughter, you’ve done all you should do”.

There was no time to sweep, but watching you love your daughter, caused the heavens to weep.

Over the toilet you had not toiled but holding her and calling her princess, reminded her she is royal.

Your to-do list seemed to you to mock, however her grins and giggles made you forget the clock.

A mother isn’t a maid, or servant woman, sure her duties to clean is plain.

However, your house is number two, for your unlike it, your children will always love you!

Heavenly Father looks down proudly, as he watches you fill your motherly role soundly.

So those days when your hair is greasy and frayed and your chores delayed,

All because your children wanted to play and be with you every second of the day,

Just bring out the toys and play with, love and cherish your little girls and boys.

And when they are all grown and away, you’ll look to heaven and say,

“Heavenly Father, I wish and pray that I could have, again, one of those days.”

By: LeAndra Lee

Family Love

Abigail is growing up so fast!!! She has such a cute and perky personality! She is sleeping through the night now and is a bundle of cute fun during the day.  I can’t decide who she looks more like, Jonathan or Me? Every day I spend with her I tell myself that I’ll do whatever it take to be a good mother. What is a good mother? A mother just isn’t the woman who gave birth to you.  Many mothers abandoned or bring hurt on their own children.  I know this from experience. But I have a mother, one who has taught me many great things.  She never carried me in her womb for months, never suffered the pains of labor for me, yet she’s suffered pains of the heart for me. Shari Lynn Johnson (my mother) has shown me true mother’s love.  Because of her I know how to love my daughter and how to raise her right.  Both my parents have taught me many things in life to prepare me for now.  I know at times when I was in high school I’d do things that through them for a loop, goodness even after high school I sent them reeling. But just because I made a few bad choices on my own doesn’t make them bad parents. Because I’m living a life and happiness and love and doing the right things and am faithful to myself, my husband, and my God it proves I was listening to their lectures.

I just want to shout out to everyone what a blessing they have been and are in my life.  I hope to be the mother my mom is to me for my little angel girl.  And I picked Jonathan as a husband because I know he’s the type of father mine was and is. I couldn’t have married a better man!!!!!!!!!!!!!!!!!!!! He’s such a good daddy! Every night when he comes home, he give me a big hug and whether or not she’s sleeping he gives Abigail a peck on her forehead and says: Daddy’s Loves you!

Just the other day while playing with her Jon discovered that she likes to clap. He’ll take her little balled up fists and clap together, causing her to shrill and smile in delight.  

Just the other day we went to see my sister and her three adorable children! I haven't got all the pictures done yet, but here is one of little Eliza holding her "precious, gorgeous, darling" (in her own words) cousin.

January 21, 2010

It has been awhile since I last blogged.   Abigail is growing fast and gaining more of a personality every day.  She is awake more often now and loves to lay in her mom’s lap and play.   Tonight we had an open house for her at Mom Cindy’s and it was a blast! Some women from the ward came and they were all more than delightful!  She got plenty of cute clothes, a cute toy and a kick and crawl play mat.  We also got a New Parent Survival Kit! I registered for one ages ago and it’s nice to finally have it on our shelf.  She’s sleeping right now and should be waking up any minute to eat. 

I have had some very interesting experiences lately.   As you may know I am in the process of writing a book. Its title I am unsure of, but it’s an autobiography about my life.  So far I have 3 ½ chapters finished and will work on as much as I possibly can after this post.  I have to work on it at night when I am up with Abigail otherwise I never find time to get it done.  Anyway, since I’ve started writing it I have pondered upon many things, mainly my family.  I keep thinking how blessed I am! My mother and father are two amazing people who have taught me many things.  Looking back, it may not seem like I ever listened to their advice or lectures they gave, but if they were to look at my life now, they’d see that I was very much so listening to every word. 

I have brothers and sisters who are some of my bestest friends! I also have grandparents, aunts and uncles, nieces and nephews and in-laws that I love dearly and whom I know love me just as much.  This is a short post because all I wanted to do was tell everyone how much I love them!!!!

                                                                            

I LOVE YOU!!!!