Attention all FL CAH families! I need your help!

I have been very fortunate to have come into contact with some VERY impressive support group leaders who are implementing programs that effect the CAH community and their families in their states. I personally will be starting to also try and tackle some of these programs that will benefit our children in case of emergencies. I will need the support of families as strength in numbers is always better. Please contact me directly if you are in the Tampa, FL area as this is the city I will be starting in and then moving on from there. I am anxious to get started. Please contact me directly marisalangford@msn.com I look forward to meeting you!

CARES Foundation

Since 2004, when Jake was diagnosed with CAH, at 4 days old, we found the CARES Foundation online and I have been amazed ever since. This foundation is so important to people like myself who had no guidance or anywhere to turn when a diagnosis is made with your child. Being a new Mom, learning the ropes of motherhood, all in addition to learning about a rare disease that now becomes top priority because without learning about it, your child will be the one who suffers...is all SO much to take in. With the support of CARES through phone calls and online direction as to how to educate myself on CAH, I can now say that over the past 5 years, I am confident in my understandings of this rare disease and would like to start to help more people who feel just as lost as I did at the beginning of my journey.

I am going to attempt this through assisting more people in FL who might need assistance or just someone to talk to (and for those who know me well, I am always one to listen and talk).

This is not an easy task. Learning about how to care for a child with CAH is wearing on the parents. We as parents only want to best for our children and sometimes it is just nice to talk to someone who has been through the same types of experiences. CAH is still so rare and many questions come with many "possible" outcomes. Personal experiences are one of the best ways to learn.

A huge thank you to all of the main CARES people in NJ and especially to Debbie Brown. She has been a wealth of information and such a nice person to speak with.

For all of you who I am so excited to meet, please know that I am available at any time to talk, pass along information or give you any insight to my personal experiences with my son and soon my daughter. I have learned alot through ecperience with CAH, doctors, medicine, etc. I hope that some pieces might help someone out there as I remember how scared I was at the beginning. There are great people out there to help. I hope I can be one of them.

Inspiration

So it is 4:05 in the AM and if you know anything about my 3rd and last pregnancy, you would know that this is a normal wake up time for me these days. Well, it has been a while since I have been able to keep up any of my blogs...yes, I know it's corny, but honestly, I seem to not be able to keep a journal for the life of me, and writing online seems so much more doable these days. I feel I have so much to tell, no one to listen (not that I care) but maybe someday people will find this and maybe be inspired...I am all about inspiration these days. Alot has happened in 2009 (and it's only July) that I have been trying to grasp everything and it's meaning as to why me...why us...why to the people I love...

I am exactly 30 weeks pregnant with Shelby Grace and can't figure out how I have actually made it this far. I didn't think it would happen towards the beginning of this pregnancy. This entire pregnancy has been an experience I will never forget and I believe that it has made me an even stronger person for myself, my children and my family. Shelby is my light at the end of this tunnel my family and I seem to be swimming in. I cannot wait to meet her and introduce her to the wonderful people I have in my life.

Life. That's another topic I have been struggling with these days. I seem to look to more people for inspiration to help me realize how lucky I really am. Yes, again, I know this all sounds so cliche, but it's just the way I fell these days. Keeping a positive attitude and focusing on what I have, not on what I don't...what I can do...not on what I can't do...how I live each day, knowing that I am lucky to be here for my family and my children helps me focus on the more important things in life.

I started to re-read The Last Leacture again today. I haven't picked up a book (unless CAH related, parenting related or trashy magazine/ gossip related) since 2004. It really has been a while and it's honestly been too long. This book is inspiring. Inspiring because you, the reader, are not in his shoes. I can do all the things that this man so desperately wants to do, but won't we able to. Certain things get to me these days and this is one of them. If you haven't read the book, go get it, or watch the lecture on You Tube.

I hope that I will be able to post more things on this site that might inspire someone else. I don't feel I am a good writer at all. I don't expect people to follow my blogs, or listen to me be philosophic. I am a terrible speller (please excuse any grammatical errors). I would love to leave behind more than just material things for the people I love while I am here. I want my children to see that being a good person, inspiration, faith and positive attitude are what it really takes to get through life. Chance, Jake, Mia and Shelby are my inspirations. I hope you find yours...

Thank you to everyone!

Well, we are already into Spring 2009 and the Gasparilla 1/2 marathon has come and gone. So much has already happened in the past 2 months I am not really sure where to begin! Unfortunately, I was unable to compete in any race during the Gasparilla Distance Classic this year. We are expecting our 3rd child in September, and I have been very ill with the beginning of this pregnancy. Fortunately, my husband Chance, was able to train, run and finish the 5K with our friends, who were also running supporting Jake. I just wanted to thank those who ran and those who donated to the C.A.R.E.S. Foundation. It is a wonderful organization that is near and dear to our hearts. I plan to train and run again (soon) as I will continue to support this organization.

TEAM C.A.R.E.S...ARE YOU IN???

WOW! Has 2008 really gone by that fast? I can't believe that 2009 is almost here. Mia, my youngest, just celebrated her 3rd birthday today. Life truly goes by quicker than you think and I can't be more thankful for my families health, happiness and most of all them. I am ready to jump right into 2009 and live life to the fullest. Why not!? Always a good motto: Go BIG, or GO HOME!!!

So, with that being said, Gasparilla 2009 is right around the corner and I am ready to sign on for the 1/2 marathon this year. And I also wanted to thank EVERYONE who supported me in my efforts last year (and of course Eric, my running partner...thanks for inspiring me with your drive. It really means more thank you know.)

Any takers to run along side me this year? (Tennille, I know you're in!) I know it is going to be a real challenge (the 10K last year was my longest run ever) but I am ready. I would love to have anyone on my team that wants to help make a difference for the families across the nation that look to The C.A.R.E.S. Foundation for support. They are amazing for what they do for families like mine. If your in, e-mail me marisalangford@msn.com and start training!

If this is your first time on this site, please read below for more information on C.A.R.E.S. Foundation and about my precious little boy, Jake, who I thank God for everyday that he is as healthy as he is. We are among the blessed...

THE BIG DAY!

So the big race day wa Saturday morning and I was up at 5:30 because I couldn't sleep. I was going to pick up Eric and then we would drive down to the race site. We both forgot safety pins and had to make a trek to the convention center before the race started (note to self...never forget safety pins for a race again!!!). There were a record number of participants at the race. I think they said like 8,700 people. It was a beautiful day and I was pumped. It was great to have Eric there for support too. (He blew my time away so he was a great motivator too!)

Once the race started, all I could think about was how lucky my family is to have such awesome freinds and family members to support Jake's cause. It really meant so much! I ran the whole race. Eric finished in 72 minutes and I finished in 90 minutes.

It was a great feeling to finish. Not only because it was not an easy race to train for, but because Jake has a long road ahead of him and I know that with love and support from family and friends, he too will lead a happy and healthy life.

Thank you so much Eric for partnering up with me to do this. And to everyone who donated money to the C.A.R.E.S. Foundation, thank you. From the bottom of my heart, thank you. Until next year...maybe a 1/2 Marathon...who knows...I would run to to ends of the Earth if I knew I could make a difference in someone's life. And because of you all, I know that I did!

Team C.A.R.E.S.

My good friend, Eric Rabinovitz, will be joining me on Saturday to run for Jake. I know that we will make a great team. I can't thank him enough for his support in helping us raise money for a good cause. It really means alot...thanks so much. If anyone else would like to join us. You know where to reach me!