Saturday, August 8, 2009

CDH Loss and where I'm at

I asked for prayers this morning for Jackson Beal here on the blog and after a simple, take-for-granted and ordinary day, I checked their blog for a possible update and found out that he has passed away this afternoon.

I always do my best to leave comments on the blogs I read because goodness knows, I like reading mine. And yet, something like this happens and I have a tough, tough time finding the right words. I am aware that there is probably nothing worse that these parents will ever experience. I know that this was a possibility from the moment their baby was diagnosed with CDH. I even know it's a possibility with my baby and if you're reading this as another CDH mother or mom-to-be, you have this possibility as well.

It's hard to face this. A little secret for everyone out there, I sometimes hate (or extreme dislike, as I'd tell my son) the CHERUBS site, simply because I think the little angels and lists of lost babies is depressing. I think there is a wealth of information and goodness knows, I printed out the little Cherubs booklet as soon as Ireland was diagnosed, but since then, beyond supporting their information output, the emails of what they need, and little updates on my facebook account...well, I don't like that first page of the website. Who, atleast during this pregnancy stage of hope, wants to continuously be reminded that death is part of the equation? Who wants to really own up to the little 50-50 statistic? I sure as hell don't want to.

I remember at the initial diagnosis of Ireland. The complete feelings of being distraught, sad, depressed and thinking the absolute worse. I googled all I could. I got educated. I got mad whenever I'd see people talk about the blessings of CDH and totally roll my eyes at the disgusting thought. I reached out trying to find someone that could be mad with me and had one or two that said it was okay to feel that way. ....that was a pause moment. ...a stop and thank God someone finally agreed with me, validated my emotions, let me know I wasn't alone. Thanks especially to Bobbi, the friendly Canadian.

That's about the time I began this blog. I, not so slowly, began to chip away the anger and began to feel some hope. I found mothers from all walks of life and in differing stages of their CDH journey. I found the full spectrum of emotion that comes with this diagnosis and heard the joys and sorrows as well. Every step of this blog and my journey thus far, I've done my best to be true in my writings and to also support the others I meet in this small world. I've also done my best to remain positive for myself, the life within me right now, and to the outside world (whether here on the internet or in the world, at large). Nine times out of ten, I truly am that positive and hopeful. You have to be...or rather, I have to be.

My biggest fear is Ireland passing. I can't fathom the hurt, anger, sadness....any of it. I don't like to go here at all and truth be known, as I write these words, I tell myself not to worry, she'll be alright. But do you know that? do I? I certainly pray that she will be a quick recovery. I've invested time, emotion, money, and a ton of love already in this unborn baby of mine. I dream for her, worry about her, laugh at her, call her stubborn, call her adorable, want the world for her, and named her. She is real and I feel her. She is with me every minute of every day right now. And for the life of me, tears come so fast when I think of her birth. Yes, I'm excited to have her and hold her and love her into this world.....and I'm scared. She will be whisked away from me immediately and we'll be apart. How long? Can you say I'll see her in a few hours and think this is what I dreamed of for her, for me? Do I want her on a damn machine that is helping her survive? ..........yes, yes, we all know the routine, the fancy words for the scary equipment and medicines...the actual terminology of what's going on with our babies' organs...what's needed to get better...yada-yada-yada. I wonder if I'll think 3 weeks was a quick time for my miracle baby or if 4 months in the NICU helped my baby soooo much or if the lifetime of worrying about a patch not working or her reherniating or her not having such great hearing or struggling to eat or ....so many damn things......I really don't know what to wonder about here because I just want my baby to get well and come home and be well. Ya know what? Candice sure as hell probably thought these same things.

Anyway, countless mothers unfortunately have the better words right now for Candice. I would just pray she knows that I atleast know where she has been before today's sad news and because of that, I ache for her and her family. I ache for the families that have been through this before and for the ones that will face this later on.

9 comments:

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  2. Unlike you I didnt know that Kasey had CDH until he was born (we knew something was wrong, just didnt know what). I can completely relate to your feelings! I know we all hope, pray, wish and dream for the best. Unfortunately the reality is that 50% dont make it...you are educated now so you are prepared for all situations most of which are not in your hands :( I will be thinking of you and Ireland and hope she defeats the odds!!

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  3. I was never in your situation- yes I have Kayla who was born with CDH but in the blog life- I didn't have this when I was preggo for K. I knew what my doc had said- 50-70% survive. I banked on the 70%... didn't know any of the babies that died- until I had K and was introduced to this blogger life. In a sense- it's great for you to see all the survivors but then it's hard for you to stay positive with those that grow their wings so young. I don't know how you do it. I would be a complete mess- as I was in the very beginning. So I guess my reason for commenting is to tell you to TRY and stay positive as hard as that seems at this point- and just remember every CDH baby is different. I don't know if this helps- but I can totally understand your position here- reading the great blog posts to reading the not so great... stay strong! :) I'm here if you need me.

    Kate

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  4. You have every right to feel as you do. But from a mom of a CDH angel, please know that we are not trying to remind you of the horrible side of CDH. When our babies pictures are posted it is in loving memory of the battle they fought. You may feel there is more death on CHERUBS, but that may only be because other sites have a seperate board for grieving mothers.

    Praying for your Ireland.

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  6. Thanks for the comment on the blog Chanda! You have every right to feel hate with this condition, as well as, all of the other emotions you have been through and will go through as you bring Ireland into the world to battle CDH. Spending time with Candice and Rob yesterday brought back so much anger after once again seeing what this condition is capable of. Seeing such devastation happen to such wonderful people and friends really pisses me off. There was a short time in the beginning, that I would drive myself crazy with the worrying and survival %'s. Not sure if this is the right way to handle things, but I am an extremely competitive person in life, sports, work, etc and I applied my same philosophy to our situation that I do in all of those activities. Every morning I woke up, I told myself out loud that we were going to win, in my heart I truly expected to win, and I redirected my worry, anger, anxiety, etc to that mindset. Granted, my wife thinks I am a bit over the top competitive and not normal, but that's just how I approach everything and it kept me sane through this journey. I didn't have just hope, I had an expectation. We had seen the most amazing parents and people lose Angel Maxton, Angel Kaden, before our delivery and Angel Avery while Kamryn was fighting her battle. Those devastating losses wouldn't allow me to lose sight of reality and I knew that I could very well face every parents worst nightmare. We didn't know if we would win the battle and on two occasions in the NICU the medical team expressed doubts about Kamryn ever getting off the vent, but my expectations never changed. Not sure if I have made any sense or not and many may look at my approach as overly optimistic, hiding from reality, setting myself up for a harder fall, or simply being unrealistic, but I thought I would give you insight into my crazy mind and what got me through the months, weeks, and days before delivery and then through the time in the NICU. I hope you know Stef and I talk about your upcoming delivery often and Ireland, you, and your family are in our prayers. Please let us know if there is anything we can do - studdard1@gmail.com (Shawn) or studdard2@gmail.com (Stef).

    Shawn

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  7. I to am a parent of a CDH angel. My son Drake was given a 75 % chance of survival. Like Faithcdh said "please know that we are not trying to remind you of the horrible side of CDH. When our babies pictures are posted it is in loving memory of the battle they fought." Please know that your Ireland Rose and all other cdh babies are in my prayers. You are right to be mad. mad at the fact that this pregnancy is not normal. Mad at the fact that there is no more normalcy, but please enjoy these precious moments with Ireland as she feels the love you have for her each and everyday. When she is born she will need you to keep being mad to fight right along side of her. Ask questions write them down because everythig happens so fast you tend to forget some of the things you want to ask or some of the answers you would like explained.
    Im sorry to ramble. If you need anything please dont hesitate to ask. My email address is burtnchristy@aol.com
    With many prayers
    Christy
    mommy to Drake Alexander Michel
    2-18-09 to 4-6-09

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  8. Hey,

    We just want you to know (again) that you are not alone in feeling how you do. The above comments, and my wife and my feelings are right there with you. We are going to deliver Max tomorrow and are about to really begin our CDH journey. It is easy to get lost in the feelings of all of this...it is just overwhelming.

    We totally agree with you about the CHERBUS website...it is just a hard one to look over. Well, we are praying for you, your family, and little baby Ireland. Talk to you soon!

    The Griffins

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  9. As a mom of a 5 year old survivor, I am at loss for words when a baby passes away from this horrible defect. It is not fair and this birth defect takes away too many precious babies. I was given an earthly angel in Ian and he is one amazing little boy. I know from experience what it is like to live with CDH, for it has forever changed my son's life and mine. I have to agree with Shawn's mental attitude, that you have to stay positive and strong and believe your daughter is going to win and overcome this battle ahead of her! I remember standing inside the chapel there at Primary's yelling at God and why me and why my son...and I realized after that moment I was given a gift and no matter how long this precious life is with me, I will fight with him every step of the way. If Ian had a bad day, I would pick something good that happened and focus on that. I cried everytime I would leave him at night, not knowing what the next day would hold, but deep down after the tears, I would turn on my positive energy for Ian, for they can feel you fighting with them. Buy some books for Ireland, read to hear, play her music, tell her stories, sing to her, hold her hand....she will know you are there. When Ian was born, I did not know this blog world existed and since then I have made many lifelong friends affected by CDH and I rejoice in there children's milestones and my heart breaks when another child is called to heaven.

    I am here for you Chanda and if there is ever that time you want to scream, yell, vent, cry, talk, you give me a call. Praying for strength for Ireland and your family. You tell that precious little girl to keep fighting and we want to see her win this battle!!

    Much love to your family,
    Tracy

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