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.

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A Place for Mama… December 11, 2009

….welcome back to where it all started….. Tales of the Toot was my very first blogging experience and it was such an important outlet for me as well as a great way to keep others informed of what was going on with Aiden (our little Toot) while we were spending so much time in the hospital.

 But I have missed having somewhere to share my musings, my thoughts, my experiences. I try to keep Aiden’s site (www.aidenscross.com) and his associated blog, pretty much just about Aiden and keep my personal thoughts/feelings out of it. I miss having that! So here I am!! Back to blog as I wish and decided to keep the name: Tales of the Toot. As much of my day revolves around my little man I am sure there will be many tales of the Tootster here, but this will also be my place: to share my thoughts, prayers, feelings, opinions, etc. 

Of course we always think we have important things to share…but I truly believe God has given me Aiden, and the trials in my life for a reason. If not to share, to make a difference somewhere for some other mama, then what for? Surely God can and will make good of everything. Even the incurable and “ultra” rare disease can be used for good.

I have a heart for mothers. All mothers, but especially those dealing with an ill child. I also have a heart for the mother-less. I know what it is like to feel like you have no one to mother you; what it’s like to be afraid that you will not know how to mother as a result of your upbringing. I also know that God has given us everything we need to overcome those fears and I know first hand that God provides us with “spiritual” mothers when our natural mothers will not or cannot fullfil their roles. I pray that one day God will use me as a spiritual mother to someone who needs it and I thank Him for my own spiritual family. They were and are so very important to me.

All of that to say this….I’m not sure exactly where this blog may go. But it is mine! For those of you interested only in Toot news, please continue to follow his progress at www.aidenscross.com. There will be a great mix of Aiden here but also personal stuff on me and my journey as his mother.

Can’t wait to see where this blog takes us……

In Him,

Christy