So who are these people?

Thanks for stopping by mooney=mc2!

My name is Mindy and I am the wife to a wonderfully patient husband, Mark, who has tolerated my shenanigans for more than 19 years now. (21 years if you count those dating years!)  God has blessed us with two amazing, and totally different boys. Connor is a thoughtful, wise and goofy, yet well-grounded, 16 1/2 year old perfectionist.  Wow, that makes me feel really old to type that. I must have started having babies at age 6, right?  Right? Not buying it? Hmmm.

Our youngest is Corrigan who was born into this world in May 2008 and is, without a doubt, the cause of every single gray hair on my head.  He is a dare-devil with a high tolerance for pain and a low tolerance for the word “no” but when he looks at me, really looks at me,  I feel like the most important person in the world.

I do not blog for profit.  I blog because I never want to forget this amazing, insane, wonderful, stressful life (and if I had to write it, rather than type it, much like dusting my house, it would never get done) and because I love photography but am terrible about actually printing my photos I add a lot of pictures to my posts.  So really, I blog because I am lazy. Type, click, upload…voila! Memories there for the taking.  Oh technology, I love thee.

I am an unapologetic Believer, lover and follower of Jesus Christ. I absolutely know that I am a wretched sinner worthy of nothing but misery but am wonderfully cleansed by the Blood.  I am also a Republican so there ya go.

I am not an expert on Citrullinemia or Urea Cycle Disorders. I do not know how I could be having only been on this path for 6 years.  I respect the wisdom of the families that have been living with this disorder for far longer than we have. I wish that they all had blogs.

Sometimes I talk about Corrigan’s citrullinemia and all of the super fun(not!) stuff that comes along with that diagnosis and sometimes I don’t.  When I do “speak” about Urea Cycle Disorders it is only in regards to how it relates to Corrigan.  My deepest desire is that there will be a cure for Urea Cycle Disorders very soon and anything that I can do to bring attention to the rare disorder should probably be considered my duty. Awareness is key.

I do not write to impress people with my words or post photographs so that you can think that I am a good photographer.  I have terrible grammar and punctuation. We all need outlets and hobbies and this blog is mine.

Finally, I realize that I have two sons but that the blog leans more towards Corrigan than Connor.  Connor is into his teen years now and prefers that I do not share as much about him and I nearly always ask Connor permission before posting photos or stories about him.  I am careful to respect Connor’s need for privacy and hope that my readers do not equate the fewer Connor-posts with how much I love that boy.  He means the world to me but he is growing up and doesn’t need his mom embarrassing him online.  Corrigan, however,  is different. He comes with extenuating circumstances and his disorder, and it’s rarity, means that there is a wonderful chance here to bring awareness and give others hope.  If one day Corrigan decides that he doesn’t want me to share any of his story, I will oblige him as well.

Stick around, read a little and if you feel moved to do so, I would love to hear from you…either in the comments or by email.  (mindy.mooney@gmail.com please put something about UCD or the specific disorder in the subject email so I won’t lose it to Junk Mail or Spam Folder ) Whatever is easiest for you.

and remember
“Your worst days are never so bad that you are beyond the reach of God’s grace. And your best days are never so good that you are beyond the need of God’s grace.”

May 2010

December 2008

ccblog2

March 2010

November 2010

                                                                     June 2011

25 thoughts on “So who are these people?

  1. I read your entry of Corrigan’s last hospital stay, the one where he received a medi-port. My granddaughter is only 3 months old and has Citrullinemia too. She had a g-tube (the botton) put in in January. She is fed almost entirely with a bottle, but the g-tube is for meds. We will be taking over some of the caregiver duties in March as the mom must go to back. She carries all the insurance through her job. As the grandmother and partime caregiver of a child with a urea cycle disorder, I want to talk to as many people who are dealing with the same issues that I am. Our granddaughter lives and is being treated in Minnesota. I would love to talk sometime.

    Like

    • Thanks for contacting me! I would love to talk to you too about any issues or concerns that you have. Corrigan does not yet have the g-tube but I know that it could be in his future. Please feel free to ask anything at all. I hope I can help…I am no expert but have had some experience in these past eight months that might be useful to you. How wonderful of you to offer to help care for Afton….and how good for you to look for support. Contact me anytime!!!!! My email to best reach me… mindy411@hotmail.com

      Yours,
      mindy

      Like

  2. Hi Mindy,

    I’m Julie, the editor of “Mamapedia Voices”, and we feature guest bloggers on Mamapedia, a site for Moms all across the country. I’ve just found your blog, and would like to invite you write a piece which could be featured on our site.

    Though Mamapedia Voices has just started out, it is already receiving a lot of attention, both on our site, on our guest bloggers’ sites, and beyond. We promote our featured guest bloggers through emails, Twitter, Facebook and more. It’s a wonderful opportunity to grow your audience!
    If you would like to participate, please take a look at Mamapedia Voices. Next, sign up here http://bit.ly/UTCGU to be on the blogger roster, and then you will be able to see the complete (and easy) instructions for submitting a piece for consideration.

    Also, because we like your blog, please download a recognition badge from us- there are many fun designs to choose from here: http://www.mamapedia.com/voices/blogger_badge

    Thank you, and I look forward to reading more of your work!

    Best wishes,
    Julie D’Agostino
    Editor, Mamapedia Voices

    Like

    • ahahaha. nifty is a great word. I wanted something brighter. I love pens, um…a lot. I have a pen problem…so perfect blog theme for me!

      Like

  3. HI Mindy,

    Popping by through SITS. I saw that you had some picture done at Johns Hopkins Hospital. I used to work for them. Wonderful place.

    I would love it if you emailed me: TheFrugalKennedys@gmail.com
    Had (2) questions:
    1) Do you live in the area of Hopkins?
    2) I saw that you wrote about recycling in your SITS comment but I do not see a post about it. Am I overlooking it? I would love to learn more and invite you to write a guest post for me on my blog to teach my readers more too! We are a frugal bunch who use lots of paper and I would love to share your knowledge.

    Like

  4. Hi Mindy,

    Just wanted to jump on here and thank you for the kind remarks you left for me. I always enjoy your reviews of my work and appreciate your taking the time to do so; especially so with your busy schedule. I wish I had your will, determination and energy.

    And remember, as my work comes from my sight and feelings your’s are better as they come from the heart. That cannot be taught. Thanks, again, for your friendship.

    Glenn

    riffspics

    Like

  5. hi my name is Trina, and I would like to share just a little of my child story with you.
    My child was diagnosis with citrullinemia type 1 @ 4days of age under the care of Jewell C. Ward, MD, PhD UT Medical Group… she is now 21 with a child of her own. She had normal pregnancy her ammonia level stay at normal rage thought out her pregnancy. Her baby is a healthy little girl with no heath problems. She has been in and out of the hospital a lot in her life time (over 60 time) but for the most part she has lived a normal life. I just wanted to stop by to let you know you have nothing to worry about your little one has a chance to live a full and normal life. just keep doing what your doing!!!!!

    Like

    • Trina,
      Thank you! THANK YOU for coming here and giving me such hope! What a wonderful thing to find before bed. Your words mean more than a million dollars to me. May I contact you by email in the future?

      Mindy

      Like

    • Mindy, I was just reading your blog and came across this post made by a mom named Trina who had a daughter that has citrullenimia and had a baby. I was wondering if you ever got in contact with her and if so if you possibly still had her contact information. Any help would be greatly appreciated! Thanks!
      - Andrea

      Like

      • Andrea, I replied and asked if I could contact her in the future and did not get a reply. I checked my files (I keep a folder of all UCD families and information) and her information is not in my folder either. I am sorry. There is a chance that she may be a member of the Facebook Urea Cycle groups or the private/closed REACH UCD group run by the NUCDF (off of Facebook, contact Cindy LeMons at cindy@nucdf.org for an invite!) I hope this helps!

        Like

      • Actually, I have found something Andrea and have messaged you at the email address that you used when you commented. If that is not a good address, please email me at mindy411@hotmail.com and I can reply to you with what I have!

        Mindy~

        Like

  6. Hi Mindy
    My son was born on August 13th, 2010 and diagnosed with Citrullilnemia at Day 5 of life via the MN newborn screen. He was asymptomatic as far as we can tell and his ammonia on admission to the hosptial was 130. He responded well to treatment to get his blood values down and is currently doing well at home. He is on lowprotein formula and two medications four times daily. Just thought I may reach out to you to get more information on your experience. If you have time can you email me? Pet_Trackers@yahoo.com I would love to know about your experience in the beginning managing your son as an infant and what meds he is one, foods he eats, etc Any information would be helpful. We are hopeful, as you are, that our son can lead as normal of life as possible. Thank you for providing such a candid look into your life and experience. I look forward to hearing from you!

    Like

  7. Mindy, I’m so glad to meet you! Your blog is amazing and your journey, though tough, is inspiring. Thanks so much for sharing it.

    So great to meet you in the Mom It Forward Forum. I’m looking forward to getting to know you better there as well as through your blog. Can’t wait for you to upload some pics on the forum. I’m a big fan of awesome photography and wish I had some mad skillz of my own to contribute. Until that time, I’ll enjoy the work of others, so do share!

    xoxo

    jyl

    Like

  8. Pingback: 2010 in review | mooney=mc2

  9. You sound like me! Alysa is 11 and she has a high pain tolerance as well, and forget about the word no just isn’t a word she wants to hear! I hope they find a cure for UCD very soon! I get worried about Alysa and if her ammonia is high or is it just tired! Good luck with everything hun! God Bless!!

    Like

  10. hi Mindy

    Your blog is amazing. Its a very nice thing you are doing, very helpful for other parents.

    Our little guy passed away last September, two days before his 1st birthday. He was diagnosed with Citrullinimea Type 1 at birth and he was not doing well as a result of the brain damage due to hyperammonemia. Anyway, he is in a better place now.

    Appreciate your blog and wish you and your family all the very best..

    Take care,
    Meg & Sai M Rathi
    India

    Like

    • Sai,
      I am so very sorry for the loss of your precious boy. You are right, he is in a better place where his brain is perfect and he knows no pain. Thank you for your well-wishes! And for stopping by!

      Mindy

      Like

  11. Hello, my name is Suzy. I am a normal student who tries to raise awareness of rare diseases and support a rare disease foundation. While I was searching up some rare diseases, I accidentally stumbled across your blog and I find this blog absolutely stunning, because your blog actually talks about how it feels like having a baby diagnosed with a rare disease.

    Hence, do you mind if I talk about your little boy in my presentation about rare disease? I will be speaking in front of my whole school, and I thought your little story would be very, very effective to the audience.

    Thank you, and my e-mail is cocosuzy@hotmail.com

    Like

    • Suzy,
      Of course you can share! Awareness is very important to the cause of rare disease! Please let me know how it goes! Mindy~

      Like

  12. Thank you so much! I really do not know how to show my appreciation in words! I was deeply touched by your love towards your boys, especially to Corrigan, because I know how hard it is to have a child affected by a rare disease.

    Yes, I also believe that rare diseases deserve some serious public awareness as they are the most tough ones to cure, if research occurs at all. Hopefully, my presentation on rare diseases will grant me $5000, which will be donated to the Rare Disease Foundation. Wish me luck~

    Sincerely, Suzy.

    Like

Your comments are appreciated!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s