I haven’t posted here in a while. Many of you know that we have had a lot on our mind the past week or so. Aiden has been tentatively diagnosed with a rare bone disorder — to go with the rare kidney disorder. Oh joy! Seriously, can my baby catch a break? If the diagnosis is confirmed, chances are he will need surgery on both legs before he can have his kidney transplant.

To be honest, I wanted to throw my hands in the air and scream at anyone who would listen, God included. But the very same day that we got this “tentative” diagnosis Aiden , once again, taught ME something.

After the long car ride to and from Dallas, he was exhausted and had spent most of the ride there and back crying because his legs hurt after long periods of time in his car seat ( the pain is apparently a side-effect of the bone disorder). He was talking on the phone to my grandmother after we finally made it back home and one of the first things he asked her was, “Is PawPaw doing okay?” Nevermind his pain, nevermind 2 rare diagnoses and surgeries and trials to come…he was concerned about the well-being of those he loves. My heart swelled. Surely God has given me a rare gem of a child. I am blessed.

Later that night, after hooking up to his dialysis machine we said our prayers. “Now I lay me down to sleep…” After the “Amen” at the end, Aiden added “Praise you Jesus.” Again, my heart was full. Full of love for this little blessing that teaches me so much. Instead of dwelling on the difficulties, he opts to Praise You, Jesus. And so….I will too.

I honestly think that my son teaches me more than any adult ever has. I pray that I am teaching him invaluable lessons along the way too.

Pray for Aiden.

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.