Mama’s meltdown

 Not a good day for me. I think that the exhaustion of 6 hours of driving for a one-hour clinic visit, combined with a very angry infant screaming madly for 60 minutes straight and worrying foolishly until I hear the results of the test leave Mama mentally…um…liquified the next day.   Today was just a bad brain day. Some days I just cannot shut off the worry..and I know that worrying is a sin to God.  I know it and I yell at myself for it every bad thought that crosses my mind…and Im weak and incapable of handing it all over to Him..and until I do I wont find peace.  

I read statistics and I browse UCD message boards and I know what might happen in the future…and it makes me so frightened….so tremendously sad for the baby-story that could have been…for the carefree life that he might have had…and to know that I contributed something to make my child have a life that will always be different and difficult…its a guilt that is overwhelming. This beautiful baby boy…this 1 in 57,000 little life that I grew and have loved from the very moment I looked over and saw the bottoms of his feet…this burden I gave him genetically…I am so sorry sweet baby…mama didnt know.

Cor's appointment went really well.  He spent an hour showing off to the doctors. Exhibiting the neck control of a giraffe and as bright-eyed and alert as any other baby…I was pleased and so were the professionals.  He went from 9lbs 2.9 ounces last week to 9lbs 9 ounces this week.  He had a difficult blood draw and that was slightly traumatic but the nurses managed to tap a good vein and save the day.

Corrigan shared his first smile with his brother two days ago and while I was a wee bit upset that *I* didnt get to be at the receiving end of that sweet expression my heart soared that Connor was the one that eeked it out of him. Connor adores his little brother so much and he deserved that first smile.  If Corrigan only ever smiled for his brother it would be okay with me..because it means so much to Big C.

Speaking of smiles…Corrigan's doctors keep asking me if he is smiling deliberately yet..and I get the distinct impression that this is important. The fact that he is NOT smiling often now has me worried.  I have tried to avoid comparing Little C to Big C because I know that his development might be delayed due to his rocky start and I didnt want to put pressure on Cor to live up to something he couldnt possible live up to…but I did Google about babies smiling. From what Ive read it says that 5 weeks is too young to be smiling frequently ( if at all ) yet I still feel like he has "failed" everytime the doctor asks and I have to tell her "no."

The little developmental landmarks that babies are expected to achieve are tiny landmines for me.  I avoid them..I walk carefully around the concept of "reaching milestones" simply because I have no idea how Corrigan has been affected by his ordeal…and I am too afraid to ask the doctors what they think his level of cognitive impairment might be.  When Connor was little I spent a small fortune on every parenting magazine and book that was on the shelves. This time I am terrified to buy one…as if opening the pages and reading an article about something easy and simple regarding an infant would somehow shine a light on something that Cor is behind on…or wont ever do…or might do well and good and I just dont know it yet. There are so many "what-if's" and Im afraid to be too positive and determined to not be too negative. I want to see him as I would any baby…and for the most part I do…but when you've had the wind knocked out of your sails like we have..I think that I dont want to get my hopes up. But by not having my hopes up…by not giving Cor every benefit of the doubt..that he can do everything on time…I'm somehow hindering him and not even knowing it.

I need a nap. and a hug. and something chocolate-y.  ooooh and some chips. lightly salted with Xanax .  please.

 

 

 

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5 thoughts on “Mama’s meltdown

  1. New to your blog. Delivered a beautiful baby girl 6 weeks ago and her story is similar to Corrigan’s. After 5 weeks in the NICU being treated for CPSI, we finally have her home (until we get a call that a liver is ready for her!).

    Going back to read through your entire journey is inspiring. This post particularly hit me today – that guilt is something I’m dealing with right now. Thanks so much for sharing your story!

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    • Congratulations on your beautiful baby girl! I took a peek over on your blog and on your CaringPage site. Luca is gorgeous. What a little fighter.

      That post that hit you hard, I just went to see which one, and I feel so sad for that Mommy. My heart hurts to think that you feel that way too. I want you to know that it gets better. Not just with Urea Cycle Kids, but for all parents in the grip of a brand new diagnosis for their child. I still see glimpses of that Mommy, in the post you mentioned, but not as often.

      Please keep in touch about Luca and her liver transplant. My very dear friend just had her son’s liver transplanted (She was at Children’s National too, I am certain she would love to speak to you about it all) and he is doing WONDERFULLY. I think that you are in very capable hands over in DC!

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  2. Hi Kt, this is Mindy’s friend. I left my contact info for you on your guestbook, please feel free to contact me with any questions that you may have. You guys are in my prayers!!!

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