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.

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397 thoughts on “My Greatest Sorrow is My Greatest Joy

  1. Ishiah 53:4 says “But he was pierced for our rebellion, crushed for our sins. He was beaten so we could be called whole. He was whipped so we could be healed.” 1 peter 2:24 says similar… Psalms 103:3 says “He forgives all my sins and heals all my diseases.” Believe that he can do this. Look into Andrew Wommacks ministry and teachings on God was ta you well. I pray these scriptures over and claim healing over your daughter. Jesus died so she can be healed. I know this sounds crazy but we need to stop doubting what Jesus can do and claim it.

    Liked by 1 person

  2. gretchen and wendy i am glad that i read this collum it make me feel that there is hope for another life with the same syptom what your daughter has so i hope that you feel good about yourself, this case is very special.

    Liked by 1 person

  3. I lost my brother 12 years ago when I was a 14 year old child. He suffered blood cancer and I think everybody around was expecting his dead soon except my family. We thought he would be okay and we never understood death. But the day he died, I not even met him once to bid a farewell. This is one thing I am going to regret for the rest of my life. You know, death is certain, today or tomorrow we all will die. I wish I could have lived his last days at fullest. A complete 24 hours sitting in front of him, watching him and maybe kissing him. Our story ended there but my life didn’t. We as human are blessed with the power to move on in life; cherishing memories of past and weaving future. They say time heals and I believe it. I just have a request to make: live your days at fullest and make these chapters of your life filled with beauty and love. You will meet your daughter somewhere again, keep faith and be patient :)

    Liked by 1 person

    • Thank you so much for this message. I am sorry about your loss and really appreciate your sharing it with me. I agree with you and do believe that we will be together again one day. That vision gives me comfort. Thank you again for reading and sharing your thoughts. :)

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  4. I saw a documentary recently about this terrible illness. I’m so sorry that this is happening to your family, and my heart goes out to you and your little girl. My mum always says that she thinks children choose their parents before they are born – I’ve always thought that’s a really lovely idea, and I don’t know if it’s comforting to you, but I thought I’d share it.

    Liked by 1 person

    • Thank you so much for sharing your message and sending encouragement. It does give me comfort. She is such a special little girl and we feel blessed to be her parents. :)

      Like

  5. Reblogged this on I define my world and commented:
    “enjoy the little things, for one day you may look back and realize they were the big things“

    It’s 3am. An hour earlier, Enya came over to my room to wake me to sleep with her in her bed, again. I was frustrated with her. Why can’t she, at 3 years old now, not sleep through the night, but still wakes up daily in the middle of the night to get me over her bed to sleep with her? Why does she has to make my parenting life so difficult? Feeling frustrated as I’ll have difficulty falling back to sleep immediately once being waken up. Chanced upon this blog while battling with my insomnia, and made me want to hug her now.

    May my trio’s (hubby and my 2 girls) little things be my big things in life, always.

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  6. Hi Wendy, I chanced upon your blog, and I said a little prayer for your family. Thanks for sharing and reminding us to “enjoy the little things, for one day you may look back and realize they were the big things“. Her days may not be long but they are well-lived because of you. Abby is beautiful, and I’m sure she’ll melt hearts with her smiles wherever she goes. Hugs.

    Like

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