Tales of the Toot

'Cuz special needs kids need special mamas!

When Your Nightmare Becomes Your Reality January 13, 2010

Dramatic title, huh? Maybe not- if it’s YOUR truth. As moms, we hope, dream, wish, and pray for nothing but health and happiness for our kids. From the time they are in the womb we are dreaming big for them. We are tenacious in our love, and fierce in our instinct to protect them at all costs. Is it any wonder that we are then shattered when we are told they are sick? Can we help but feel that there is no hope for all the dreams we had for them?

Let me tell you something, mama. Don’t stop dreaming.

When my sweet little boy was diagnosed with an ultra-rare disorder, I felt robbed. Robbed of the ability to kiss all the boo-boos away; robbed of a “normal” life for him and for me; robbed of the dreams that I had for my little boy. I cannot tell you how many nights I literally lay on the floor in his room, sobbing and praying and asking “Why?” And then I realized…

If I stop dreaming for him…I am robbing him….I am robbing myself. So, I looked around at the blessings, the joys, the wonders of all that he is. And, I thanked God for every good day we had and made plans to have as many of those good days as possible.

It’s not easy having a child with special needs. We don’t fall into the “normal” category, but we make it work. We’re okay with being “special”.  Today, I dream of a cure, a holiday season without a hospitalization, a transplant and a life without a dialysis machine. In the meantime: we take family trips, we play, we LIVE and we DREAM.

We have vowed to make everyday count. We will not let this disease define our family, our son, or how we live – and we will never stop dreaming.


18 Responses to “When Your Nightmare Becomes Your Reality”

  1. Heidi Says:

    You are so right Christy. What is it with mommies and boo boos. That was the hardest thing in the world for me when I was pregnant with Timothy, I could not fix his boo boos. Mommies are supposed to be able to kiss and throw a band aid on any boo boo and it would be okay. The awesome part of boo boos that I have come to realize…God always puts the much needed band aid on my sweet angel. It may not be the band aid I would have chosen but it has always been the RIGHT one. When God hand pucks mommies for His angels with special needs, he knows what he is doing. Aiden is very lucky to have you as his earthly boo boo kisser!! Keep dreaming big for that boy and WATCH OUT he will achieve more than what you could possibly dream!! Love you!

  2. STEPH Says:

    sniff sniff!!!:) you are a very strong and courageous woman. you have endured and suffered more since Aiden has blessed us all with his presense than I have in my entire life!!! love you and cant wait so see you and that precious lil man!! I pray for you and the rest of the bunch always!!!glad I didnt have my make up on yet. Love ya!! steph

  3. Kim Orlando Says:

    Love how you turned your perspective around. I know it didn’t fix the problem but it sounds like it is a whole lot easier to bear. Thanks.

  4. I am so sorry for this stressful diagnosis! And I absolutely love the way you are facing this with courage and determination! What a beautiful position to take. You can beat it : )

  5. Elizabeth Says:

    That’s such a beautiful testament to your son– you are right, when we stop dreaming, we stop believing, we stop achieving. It’s so easy to lose sight of what really matters, to get so bogged down with “today” that we lose all hope for “tomorrow”. This is a great reminder to take it day by day, but still look to the brightness of the future.

    Confessions From A Working Mom

  6. meanmamareviews Says:

    I love that you said “stop dreaming for him” and that is robbing him and yourself. What a perspective that many could apply! Your post was very moving.

  7. Jenny Says:

    aww that’s so sweet. i agree. always look at the bright side 😀

  8. Naomi Says:

    I’m so sorry to hear that your little boy has been diagnosed with a rare disorder. That must have been a shock to hear. But you have a wonderful attitude and perspective. And the truth is people with special needs are some of the most important special people on the planet. They teach us things that no one else can. And they teach us to love in ways we never knew was possible. Thank you for your post. You are a beautiful person and an inspiration.


  9. Brae Says:

    What a sweet family- sweet little boy. You made me cry a little. Good luck, and God always bless.

    Following from MBC. Come see me too!

  10. jenelle77 Says:

    Dropping by from MBC’s aspiring writers… what a beautiful post. You are a strong Momma, which I think we all are – but sometimes it takes these little “life-tests” for our Momma-bear instincts to show themselves.

    You are an inspiration…
    Jen 🙂

  11. Lesley Says:

    It is hard to have a special needs child. You don’t want to make them feel different from the other children around them but at the same time you have the fierce desire to protect and advocate for them. We might choose a special needs child for our next adoption. That seems like a really good thing to do in this world but also very scary. There are days I pray we don’t find out anything more about our daughter that we were not told or don’t suspect now. But it will always be the best thing we ever did. Happy SITS Saturday Sharefest

  12. Shell Says:

    That is beautiful and a great reminder, too.

    I want to write a fabulous comment, expressing how much this means to me, but I have no words right.

    Just beautiful.

    Stopping in from SITS.

  13. Meg Says:

    What a beautiful posting! In all my years as a principal, I am most thankful for mothers like you. Your son will succeed because of your never-give-up attitude. Cheers…here’s to you!

  14. Angelia Sims Says:

    That resilience can only be found in families with chronic kids. I remember when my sister asked why over and over. Now she is the best nurse I have ever seen in the ER at Texas Children’s. Seeing her speak to the nurses at graduation. Telling them to be the best they could be. I knew why. For her, the journey was to that place and I am comforted knowing she helps families like yours.

    Keep dreaming, your story is soooo very important and it will impact lives.

  15. Really an inspirational post. Your son is very lucky to have you. I am so sorry to hear that you have to go through this – and no one can understand what you are going through but you. I like that you’ve decided to keep moving forward and you’re showing him to never stop dreaming, no matter what.

    (Aspiring Writers Group)

  16. You are such an inspiration to me. I admire you so much for your strength and dedication no matter how rocky the road may become. Both you & Aiden have touched the hearts and lives of so many and will continue to do so. I pray for God to give you continued strength so that you can endure and overcome any challenges that you may face. Love & Hugs!

  17. Ghada Says:

    Thanks for reminding me how lucky we all really are. Nicely written
    Following from MBC 🙂

  18. […] am all about living life abundantly in the face of this disease. My family is determined that we will not let this disease define us, […]

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