June 16, 2011

Hoping for Hope: The Never-Empty Nest

I read the article The Never-Empty Nest today in Good Housekeeping about a family with two boys with Fragile X Syndrome (July 2011 issue, page 168 - or click here to read it online) and it brought on a flood of emotions. I paused halfway through to decide if I wanted to finish reading it. The feelings it stirred up were fresh, raw, and intense.

I am at the beginning of my journey dealing with Fragile X Syndrome. My son affected by the syndrome is only two years and 9 months old. Even though I have just begun to wage through the trenches of raising a special needs child, there are some days when I already feel old and tired and beaten down... and very, very alone. I am learning that there will always be more questions than answers BUT if I had to choose just one question to be answered it would be:

Will there be someone to love my Grant when I am gone?

Many nights I cry into my pillow begging God to answer the question. I know that I am not alone in the search for a hopeful future for my son. It is that search that motivates many parents like me to reach out to others for help.

I did finish reading the article. While it didn't answer the question (not that I thought it would), it was a great piece that said many things that needed to be said. I am thankful for the reminder that we, in whatever difficult circumstance we face, choose our attitude. Yes, there are days when I have to actively fight the urge to be bitter. But what does bitterness solve? I keep coming back to and resting on the truth that God has a purpose and a plan. I choose to trust Him.

Like the article, this blog post doesn't have any answers. Instead I leave you with a question:

Will you love someone's "Grant" in your life?



  1. I have the same question. It's part of the reason I'm trying to get a strong local support group going. I think we need to love each other's "Grants."

  2. My heart aches for you and the uncertainty you must feel about Grant's future. I believe God's plan for your precious little one extends beyond that which we can know or plan for or understand. Still, praying for your family and these questions that, for now, have no answers.

  3. @Abby

    Thanks for your encouragement and prayers. I am so excited to hear about your new little one on the way - congrats!!

  4. @Bonnie@TheFragileXFiles

    It is a heart-wrenching question that so many have. I have yet to meet anyone in my area that is dealing with FX... I, too, want to create a strong local support group. Let me know if you have any tips!

  5. Karen, this blog post pulled at my heart. I know what you are feeling, as after I gave birth to my daughter with Downs 12 years ago, it was the first thing I thought about. In fact, I grieved it. You will find your answer - no doubt - it simply takes time. May God bless you, provide answers, and bring you peace!


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