I thought I would be completely honest in this blog and report the happy experiences as well as the unhappy ones. Although it may seem that Brad and I have maintained a positive outlook, that isn't always the case.
Every now and then, I find myself having "freak-out moments." Yesterday, I had several. In fact, since the "moments" sort of strung together, they probably are better described collectively as a "freak-out day."
I'm not quite sure what prompted my "freak-out." All I can tell you is that I suddenly started to ask myself how I would ever handle all of the challenges that we likely will face with Claire's condition: Pediatrician visits, neurologist visits, shunt placements, shunt revisions, shunt infections, physical therapy, occupational therapy, speech therapy, seizures, feeding issues, sleeping issues, etc.
I don't want Claire to have to grow up being dragged from doctor to doctor and therapy to therapy. I want her to be a happy little girl with a care-free life.
I don't know how I'll find the time, either. As some of you may know, I have a very busy job in which 12-hour days are the "rule" rather than the "exception." In fact, yesterday, I didn't leave the office until 9:00 p.m., and today I left at 8:00. I love what I do and don't mind the long hours, but my schedule makes it difficult for me to take care of myself, let alone another child - especially one with challenges like Claire's.
I feel so torn because I love Claire and want what is best for her, but I realize that I won't be able to provide what is best for her without my job. I'm sure all parents experience this to some degree, but somehow I feel my concerns are amplified by Claire's situation.
Thankfully, Brad was able to talk me off of my ledge after speaking with the mother of a child with the same condition. She has helped us maintain perspective throughout this experience, and it is reassuring to know that someone else has been down the same path before. I'm sure I'll probably have another freak-out day (or a hundred) before Claire is born, and afterwards as well, but I will just have to remind myself that if other people can get through it, I can, too.
I know that it seems incredibly rough and some days you are going to feel that way...and, you know what, that is ok. If you didn't have freak out moments, you wouldn't be normal. Just remember, God is with you. He can help you face any challenge. Remember that although you may have to deal with a few "extra" things in a given day or week or month, you still will have your beautiful daughter. The little girl that you prayed for. The little girl who will love her mommy and daddy so much. A little girl that will be a gift to you and Brad, your family and, quite possibly, the world. She may be the reason a cure is found for this awful disease...you never know what the plan is. You and Brad continue to be in my prayers.
ReplyDeleteHugs to you and Brad! You can do it! I know it.
ReplyDeleteAmy and Parker
You, Brad, and Claire are given these challenges because GOD knows you can handle them and so do I. We love y'all! ~ M&J
ReplyDeleteI remember very clearly my freak out days. I remember one in particular when I was about 30 weeks pregnant. I sat on the floor of our bedroom and just sobbed deep, gut-wrenching, heart-breaking sobs. I made it through that day and others. I think the worst part of all of it was the pregnancy and feeling like I couldn't do anything to help Elijah. Once he was here and we knew what we were dealing with and we knew we were helping him, things got easier when you expected them to get harder.
ReplyDeleteMy family's love goes out to you, your husband and your daughter. There is actually a pretty good-sized online group of parents who have been through this before. I can "introduce" you to them if you'd like. :c)
Hi! Jennifer told me about your blog. I have a 2 year old with hydro. I remember well how scared I was about having my son. His vents were in the high 50's at birth. I agree with what Jennifer said. Once your little Claire is here, everything will be so much easier. The bad news is yes, I have to cart my son around to physical therapy, occupational therapy, speech therapy, the eye dr., neurosurgeon, neurologist, pediatrician, etc. BUT (and it's a HUGE but) These appointment will begin to thin out the older your child gets and I am pleased to tell you that my son is carefree and the happiest little guy you could imagine. He has not clue there is anything "different" about him. He just enjoys his life where ever he is! I have seen plenty of children with ventriculomegaly go on to be perfectly typical. And if she is not, my advice to you is to make sure that you both LOVE your therapists. That will make it fun to see them. If you have any questions or would like to hear more about our story, email me at sherrilynnlee@gmail.com or visit our blog at http://sherrilee.wordpress.com
ReplyDeleteBest wishes!!
I feel the same as Jennifer and Sherri, that it got easier once Cayman was born. I had freaking out days too. I use to sob in the shower every morning for awhile as I looked down at my growing pregnant belly.
ReplyDeleteCayman is sitting next me staring at the computer as I am reading your story. I asked her, "do you want to leave a comment too?" So here's a little message from Cayman to make you smile::
ReplyDeleteujchejjjjujdfjjsxc mcxmndjkxjuu
Kristen,
ReplyDeleteThis is Brad and the message from Cayman made me smile! I'm still smiling! She is such a sweet girl! Tell her I said "thank you!"
Sherri,
ReplyDeleteWe were actually looking at your blog last night before we went to bed. Miles is a cute kid! He looks like he is doing well and is very happy! I "friended" you on Facebook, just so you know who Brad is!
Hi Brad and Amy! I understand the unknowns you are faced with. We were told our daughter had "issues" when I was 33 weeks pregnant. My Perinatologist told us our daughter most likely had Down's Syndrome and he wanted to do an amnio to confirm. The FISH results came back with no Down's. Audrey was not shunted at birth because her Hydro was mild in the beginning. We learned of her official diagnosis (Grieg's Syndrome) when she was two weeks old. She has been through a lot and in the beginning it was very hard for me to understand. Other issues have come up since she was born that have been related to her hydro and I used to sit holding her in my arms and just cry uncontrollably, I would cry in the shower, I would cry in the car, I would cry at my desk. But once I learned to take everything one thing at a time and my husband and I worked together, it got manageable. God has blessed me in more ways that I could have ever imagined. Every little thing is not taken for granted.
ReplyDeleteMy family and I will pray for your family. The unknowns are difficult to think about. I'm a follower now so I will check in often.
Oh, Brad- Sorry! I didn't realize who it was on facebook. I will send you a new request :)
ReplyDeleteHi Amy & Brad, Jennifer told me about your blog. I had plenty of my freak-out moments myself. My son, Tyler, has x-linked aqueductal stenosis (genetic hydrocephalus). We found out at 20 weeks gestational and his head circumference was 54 cm when he was born. He is such a happy boy and we are so blessed that he is a part of our life. We have met so many great people that we would have never met and I am so grateful for their friendship. I will keep your family in my prayers and hope that your pregnancy is as stress-free as can be. If you have any questions, please feel free to email me at dldemarest@hotmail.com and check out my blog www.tylerstrip.blogspot.com.
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