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.

We have spent way more than our fair share of time in the hospital over the past 2 years. Although living in the hospital is NOT my preference, it has allowed us to encounter some of the most wonderful people. Here are the 3 people you meet in the hospital.

1) The Angel — aka the nurse. This is not any or every nurse, but the one who reaches out to you. The one who loves and takes care of your child as if they were his/her own. The one that cares not only for your child, but for you. Some of the wisest words ever spoken to me were from the mouths of these angels. They are truly heaven-sent and I thank God for them. (We love you Grandma A and Debbie!)

2) The Other Mother – This is the one that has been there as long (or longer) than you. The one who REALLY knows what it’s like to live with a sick child…the one that you can hear say “Just trust God” and believe that they know what they are talking about. The only one that can get away with telling you “It will be okay”…because they know it will be okay, they have been there, they are there and they are invaluable as a source of inspiration and comfort. (Much love to you, Heidi!)

3)The Dr – I pray that you are as fortunate as we have been. We are blessed to have been surrounded by doctors who not only are excellent at what they do, but have a real heart and love for the kids they treat. Our doctors have been encouraging while remaining honest; have never given us false hope but have never given up and have laughed and cried with us. They love Aiden, they love what they do…and it shows. (Many thanks to the ICU staff of Medical City Children’s Hospital in Dallas, the surgeons and the ARCH group…and of course Dr. Q )

If we have learned anything, it is that God is always present. On days when I just couldn’t quite feel his presence and didn’t quite know what to say God always had someone ready to minister to me in the way that I needed. I thank Him for that and feel so very blessed to call the “people you meet in the hospital” friends and family.

Happy New Year!!

Praying blessings for each of you for the new year!

We have been so blessed in so many ways this holiday season. First off, it was Aiden’s first full Holiday season spent at home with no hospital stays! We have so enjoyed being home and enjoying friends and family this holiday season!

Many of you know that I have a cousin who was critically ill. The doctors gave absolutely no hope and were actually waiting on him to pass. He was in severe liver and kidney failure and they believed that his brain was effected and had possibly already herniated from increased pressures. The DNR had been signed and transplant teams called to harvest his heart upon his passing…..and then a miracle happened. He opened his eyes, began following commands and now 4 days later is sitting up in bed, playing his IPOD and talking! It is truly a miracle–no other explanation. Dr’s and medical staff from surrounding hospitals in ATX have been coming to see this miracle for themselves. To God be ALL the GlORY!! I know that God has a great plan for Alex and cannot wait to see what he will do with his new chance at life!

In 2010 I will be adding blogs on at least a weekly basis and will be having periodic contests for give-aways, etc. Please join our mailing list for updates!

Have a wonderful but safe New Year’s Eve!!!

Christy

….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