Finding Perspective In A Life Under Water

Wendy Ferguson:

Such a great post from a friend. It helps put life in perspective.

Originally posted on Drifting Through My Open Mind:

photo: ThinkStock/Comstock

photo: ThinkStock/Comstock

“Darkness has a hunger that’s insatiable and lightness has a call that’s hard to hear.”

-Indigo Girls, Closer to Fine 

Do you know why I hate drama? Aside from the fact that negativity breeds like a voracious beast, it’s just so damn wasteful. So much time and energy can be wasted on drama. And almost all drama is manufactured, created… and life is full of enough hard stuff.

I DON’T DO DRAMA.

Because I know what it’s like to have good days and bad days. I know what it’s like to have a day so bad you feel like you’re drowning. Like you can’t breathe. Like there’s no way out.

I know what it’s like to watch someone you love live in unspeakable pain. I know what it’s like to spend the night with your brother in the hospital. Watching him writhe in pain. Begging you to put…

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Just One of the Girls

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“Mom, can I go, can I go, can I go?” is all I heard over and over again. My daughter, the daughter who is dependent on me and is rarely out of my sight, wanted to go next door to play with two little girls in our neighborhood. My husband and I kept looking at each other, then back at her, not sure what to do. She had a begging, pleading look on her face, wanting to go and play, just like the other girls. She is at the age of wanting to break away and feel independent. But how could I let her go? How could I trust that she would be safe and make good decisions? Although she is 9, her mental age is that of a 5 year-old. We have never felt comfortable with the idea of letting her go and play without one of us there. I had all of these…what ifs? floating around in my head.

For all of Abby’s 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and “my perceived dangers.” When I say “my perceived dangers”, I am referring to any and every possible harm she could come in contact with. Being an Emergency Room Nurse can give you a heightened awareness of every possible danger that a child could suffer. I could foresee the smallest danger and knew that it could lead to a tragedy. I did not worry myself sick, I just tried to make the best decisions when it came to Abby’s safety.

After we realized that Abby had a developmental delay, another mommy protective mechanism kicked in. I began feeling concerned about her being bullied, left out or made fun of at school. One particular day in early grade school, I went to eat lunch with Abby. I was standing in the lunch line with her and a little boy turned to me, pointed at Abby and asked, “she does not know very much does she?” I had to hold back what I really wanted to say. What came out of my mouth was “what do you really know at your age?” He did not say anything and turned back around. I looked at Abby and felt a wave of relief. She was holding her tray, standing on her tippy toes, checking out the food selection. She was not even affected by his comment. The beautiful thing about Abby is that she is innocent and simple. She does not even realize that she is intellectually different from her peers. She thinks she is just one of the girls.

“Mom, can I go, can I go, can I go?”

It was nearing dark on this particular night and the mosquitoes were out. Have you heard about the latest mosquito-borne virus that has just reached the United States? Well, I have and it sounds terrible. Once again, my motherly, ER Nurse self kicks in. I ran inside to get the Avon mosquito spray to put on Abby (the spray that I researched and decided was the best for kids). When I got back outside, she was gone. She had already run next door to play. Aside from feeling panicky, a part of me was really happy for her because it was almost as if she was “just like one of the girls”. I kept looking over the fence, checking out what she was doing. As worried as I was, I loved hearing the giggles and laughter from the girls. Even my husband messed around in the yard doing little things so he would be close, right there in eyesight and earshot.

Later after Abby came home, I quizzed her about her independent night of fun. She was so excited and already had the rest of the week planned with the girls. I felt so happy for her. She got to experience what is felt like to be just one of the girls, playing outside until dark, without her parents playing with her or watching over her. It felt refreshing to let her go for just a little while. Deep down I knew she was safe, I just had to let her go.

As I was giving Abby her bath that night, I couldn’t help but notice a new mosquito bite on her leg. Then I noticed how extremely dirty her feet were. I stopped bathing her, sat there for a few minutes and smiled. It really felt like she was just one of the girls.


 

 *Please visit Abby’s Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE.

*To learn more about Sanfilippo Syndrome, please visit www.mpssociety.org or www.teamsanfilippo.org

*There is HOPE for a CURE for Abby and other children like her. Gene Therapy has shown promising results but has not gone to clinical trial yet. We are raising awareness along with other parents of affected children to help start the trials at Nationwide Children’s Hospital in Ohio. If you are interested in donating towards a CURE for Abby, please visit her Go Fund Me page at www.gofundme.com/abbygracecure. We are forever grateful for your support. All donations are tax deductible and 100% goes towards research and finding a CURE for Abby.

 


 

My Greatest Sorrow is My Greatest Joy

“Enjoy the little things, for one day you may look back and realize they were the big things” ~ Robert Brault

She’s dying. My 9 year old daughter is dying. Today I can say it without crying, but not necessarily tomorrow. Each day is filled with up and down emotions. Some days I am hopeful for a cure, but many days I am filled with despair and an indescribable sadness. My heart aches. My tears burn. My head and my body are tired.

You see, my daughter Abby was recently diagnosed with a rare, genetic disease that is terminal. There is no cure or treatment. No cure. 100% terminal. Every child diagnosed with this disease will die. I have never felt so helpless. As mothers, it is our job to nurse our child’s boo-boos, dry their tears, teach them how to deal with sorrow and upsets, and give them hope for a future filled with success and happiness.

Abby looks like a typical, healthy 9 year-old but her little brain is slowly fading away. She was normal in her development and met the usual childhood milestones until age 4 or 5. She then started to show a decline in her cognition and learning ability. We went through years of testing to find out the cause of her developmental delay. What we found out was worse than anything we could have imagined. She was diagnosed with Sanfilippo Syndrome, a rare disease that we passed on to her. How could that be? How could our precious daughter be born healthy and at age 8, we find out she is not healthy at all? She was born with ten fingers, ten toes, passed her screening tests, walked, talked, potty-trained on time, and was very outgoing. We just did not understand.

Her disease causes progressive brain damage. She will lose her ability to walk, talk and feed herself. She will more than likely lose her hearing and have seizures. Most children diagnosed with Sanfilippo Syndrome do not live past their teenage years. Aside from losing her, our biggest fear is watching her suffer. The thought of watching her lose abilities that she once had, slowly fading away, just makes my heart ache even more.

There will be no driver’s license, prom, graduation, college, or wedding. My husband will not get to teach Abby how to drive or walk her down the aisle, I will not get to pick out a prom or wedding dress with her, we will not visit colleges, and we will not get to revel in her children. These are things that we are gradually learning to let go of. As parents, we just assume that most of these things will be in our child’s future.

Needless to say, we have done a lot of praying, researching, and connecting with other affected families to try and find our way through this life-changing event. Through all of the sadness and sorrow of the past year, we have been privileged enough to gain new perspectives on life. We found strength we never knew we had. Our faith has grown even stronger. We have learned not to take each other and each day for granted. Our relationship with each other has been strengthened. We rely on each other so much more to get through daily life with a special needs child. Our lives are filled with difficult conversations, making dreaded decisions, explaining her illness to people, never-ending doctor’s visits, things that most people just can’t understand.

The most important lesson that we have learned through this is that we have to live one day at a time. I used to be a planner and thought I knew the path my life would take. As little girls, most of us planned our entire life, down to how many kids we would have. I used to think I would work a particular job, live in a particular house, in a particular neighborhood, have 2 kids, 2 dogs, and have a pool with a cute little fence around my house. Since Abby’s diagnosis, my husband and I both changed jobs so we could spend more time as a family, we sold our dream home and down-sized, and we moved closer to our extended family. Our lives have done a complete turn-around.

After Abby’s diagnosis, we live by the cliche, “enjoy the little things, for one day you may look back and realize they were the big things“. Now, I just want to enjoy a smile, a hug, or a laugh from my daughter. I want to sit with her and play. I want to help her brush her teeth, wash her hair, and help her put her shoes on. I can’t take enough pictures of her. We celebrate the smallest accomplishments as if she won an Olympic Medal. I am aware of what the future holds for her but try not to think about future milestones. It is too painful. I just want to live in the moment and enjoy her right now, the way she is.


 

*Please visit Abby’s Facebook page at www.facebook.com/CureSanfilippo to learn more about her progress and fight for a CURE.

*To learn more about Sanfilippo Syndrome, please visit www.mpssociety.org or www.teamsanfilippo.org

*There is HOPE for a CURE for Abby and other children like her. Gene Therapy has shown promising results but has not gone to clinical trial yet. We are raising awareness along with other parents of affected children to help start the trials at Nationwide Children’s Hospital in Ohio. If you are interested in donating towards a CURE for Abby, please visit her Go Fund Me page at www.gofundme.com/abbygracecure. We are forever grateful for your support. All donations are tax deductible and 100% goes towards research and finding a CURE for Abby.