I started this blog so that I could record my thoughts on this journey of ours. And my goal has been to be real the whole way.
Somewhere along this journey I have believed the lie that I am suppose to be so strong all the time. Because I willingly chose motherhood I should be happy with every part of it! I realize we often do not get to choose the way life turns out for us. We just manage what comes our way. I do think with time there will be parts of all this that will get better. I look forward to when my heart is more at peace not having answers to all my "why's". I am the kind of person that likes to understand exactly why things happen. I cope with things better if I can google them. When Cayman was diagnosed prenatally with so many anomalies I googled each one and tried to find a cross reference that could sum up an answer to why all these malformations took place in her. I haven't been able to find anything, nor the doctors or the genetists. I've had my share of shouting matches with God. My heart is not to anger and rebel from Him but to seek and find Him in this. I do not understand His heart in all of this. God's nature and love is good. I do know that. It's what draws me in and keeps me there even when He doesn't make sense to me.
I find myself often saying to Cayman in my mind "I'm sorry little Sweetheart. Mommy didn't know how to do it differently. I'm sorry I couldn't give you a better start. I'm sorry you have to know pain like you have."
I don't like it when people say "But Cayman will grow up not knowing anything different." But that doesn't mean she won't hurt nor at times wish it could be different for her or question why does she have to go through this when another child doesn't. My prayer is that I will know how to be there for her and know what to say. I was watching Forest Gump the other night. Always before I saw this as a goofy humerous movie, but this time I perceieved it a little differently. I liked it when Forest said, "Mama always had a way of explaining things so I could understand them." That is what I hope I can do for Cayman.
I am always so curious when I find someone that has had other kids after having a child born with serious birth defects. What went through their mind during those other pregnancies? Did they plan to be pregnant again? I am so afraid to be pregnant again yet my desire for it won't go away. My mind will forever know the reality of what most women ONLY fear and NOT experience during their pregnancies. Before 20 weeks gestation I lived the normal fears...I hope it's a healthy baby, I hope I have a normal childbirth, etc. Then after 20 weeks gestation I lived the reality of those fears. Most literature printed on pregnancy fears says to the expectant mother: "most of your worries are unfounded -- and what you fear most will likely never come to pass. " Do you know how silly those words seem to me?!
I want to know what it is to have a normal pregnancy. I want to know what it's like to be pregnant and shop for my baby and not wonder if she'll even live to wear the clothes I bought her. I want the excitement of going into an ultrasound without any bad news reported. I want to know what it's like to have more tears of joy than of sadness during pregnancy. I want to know what it's like to have my baby in my hospital room with me after she's born. I want to know what it's like to hear my baby's first cries.
That was my dream and I want the chance to have that experience but it's forever changed for me. I don't know how I could be pregnant again and not feel that I am experiencing it all over again because the worries are so much more real. I know that it wouldn't be easier if it was my 2nd or 3rd, etc, but I feel I have lost hope of future biological kids. The whole pregnancy was so different than what I dreamed of. I didn't know it would take us so long to get pregnant, I didn't know I would experience a high risk pregnancy, I didn't know I would have to be put to sleep and miss the birth of my baby.
I am so glad God did not take her from me. I thank Him for each day I have with her. She is so precious.
Obviously I am still trying to process what God has brought to me. I think Cayman is going to teach me things about God and myself I never knew.
To Be Real
Wednesday, May 14, 2008
Posted by Kristen at 12:21 AM
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Wow. Okay, nobody expects you to be strong all the time, and you should not expect that of yourself. I literally just got off the phone with my mom and she read me this quote that she had bookmarked for me it said "God doesn't give us what we can handle....God helps us handle what we are given." To me that is comforting. I always think about little babies that need extra help who are born to people who do not want them, is that what God intended? I think that your faith is what helps you through it all. I don't know if any of that made sense, but I do not think it was a coincedence that she just told me that then I read your post.
On the future pregnancy thing, I know what you are feeling there too. Though my pregnancy was different than yours and was "typical" the outcome was not. I know that we will not have any more children biologically, the questions during the pregnancy would drive me mad. But it is easy for me to say that because I have 2 children. I know many (mostly through blogging) women who have children with Ds who have gone on to have "typical" children. I can't imagine how hard it is for you becuase you have no answers or diagnosis. Just know that there are many of us that read your blog and love you and Cayman and will never judge you. Be real in your writings and be real to your self, do not feel guilty for anything you are feeling, we all know that above it all you love Cayman!
Kris,
I want to write a book (imagine that!), but as I am at work I will attempt to keep this short and sweet.
I've known you my entire life and I have ALWAYS know you to be someone that experiences every emotion fully and deeply. You see the world as few do and pursue the understanding of it as even fewer do. That is exactly what makes you the incredible person that we all fall in love with! It is also exactly why you are the perfect parent for Cayman. Never for one second though does that makes it simple or easy nor does it mean that your desire for "normalacy" would poof into oblivion.
From the outside looking in, Kris, if God had given Cayman a choice I fully believe she would have plopped her cute little self right into your lap. You can't begin to imagine the hundreds of lives your little girl has touched in just a few months time. Imagine what she can do with a lifetime!
Give yourself the permission to cry, to be upset, to ask why, to contemplate the future, to search for answer...because you are never a girl to get stuck and wallow :)
I love you!!
Ang
Kristen, I just want to ditto everything my best friend KC said. :) We love you and love reading your blog, and we love that little girl. I know Shannon's girls have been praying faithfully for Cayman each night and we need to know how to pray. We love you!!
PS.I like that quote KC.
I'd like to ditto what everyone else has said too! Being real and transparent with people is so hard because it means coming to grips with the fact that we struggle, and letting others into our hearts when we know it might get ugly. The truth is, though, that being real like this allows others to know how to help support you...which is what we should do and WANT to do as your siblings in Christ. (My 2 little girls have been praying for you and baby Cayman every night.) AND, not only this, but being real encourages the rest of us to be real too. It lets us know that we're not alone in our worries and fears...it draws us closer to each other. :)
You are one of the sweetest people I've "met," and even if there are no google-able answers to tell you why Cayman must face the hard road ahead and the pain, I know that you'll guide Cayman through it and show her the One on whom she can depend, and that you'll depend on Him too. It's ok to feel disappointed and sad and angry that things aren't the way you thought they'd be. God can handle it, and He wants you to bring those feelings to Him. :) Love you love you, and keeping you close in thought and prayer!
Well I generally don't have many words of wisdom, but I will give it a try. I am always amused when someone tells me how well I am "coping". I think to myself, was I given a choice? Was there a checkmark somewhere that I marked that said, yes please, I'd like a special needs child? We cope because we have to. And that doesn't mean that I am coping well all the time. I still have days when the frustration brings me to tears. When I think that between PT, OT, ST, neurosurgeon, neurologist, pediatrician, audiologist and social services appointments that I will never again have 5 free minutes. But then you look at your little one smiling back at you, take a deep breathe and go on. Anyone who tells you that they don't have rough days coping, is lying.
As for the future pregnancy thing I can only tell you how we handled it. While I was in labor after Owen decided to make a break for it a week early, I met with the OB who would deliver Owen. It wasn't our normal OB, so I had to explain our wishes all over again. I told him that we very much wanted to have my tubes tied while they had me open. He very gently explained that he prefered not to in cases like ours. He asked us how we would feel if the "worst" happened and wouldn't we want to keep the option of having another one open? I just asked how on Earth having the "worst" happen would make me feel like I wanted to go through this all over again. I calmly explained that my husband and I had had 17 very long weeks to think about this and we had decided that if the worst happened and we desperately felt the need to have another child, that there are thousands upon thousands of children out there who need a good home and we would most certainly be able to provide one for them. We were very sure about our decision that we would proceed with adoption under those circumstances. Maybe it is easier for us because we already have one "normal" child, but somehow I don't think I could go through a pregnancy ever again under any circumstances. I have several friends who have adopted children because their health does not allow them to have children of their own. They are some of the best parents I know, and while I'm sure they wish they could have had one of their own, I know they don't feel anything less for their children than I feel for mine.
I'm not trying to influence you at all. I'm just sharing with you our choice, hoping that you can make the same Peace with whatever choice you make. And remember, you are young, there is plenty of time left to think about all of this when you have more sleep. Because I bet the one thing that is certain is that you don't want another one until Cayman is sleeping through the night :-)
You are strong and wonderful and we are all in this together. *hugs*
kristen, my name is courtney and i'm one of lisa's friends and co-workers. i just want you to also know that i follow your posts and am so deeply touched by your blogs and by your words. you are truly an amazing woman with an amazing baby girl.
like i've also witnessed with elisabeth's journey first-hand, you moms are so strong and so loving. these little girls are so blessed to have parents that do all they can to make the best life for their children.
i don't have kids, and i can't even pretend i can rightfully say "i know the feeling" in this particular realm--all that is being a mom, but i do know that i too have wondered why things happen... i like to understand things as well. i totally agree with the google thing!!! :]
i'm only 21, and i know that you have so much more life experience than i do, but i have come to learn that in time things start to make sense. just keep your faith close and your head up. you may not understand "why" right now, but hopefully in time it will become clearer for you.
again, thank you so much for sharing with everyone your family's amazing journey. you really do touch so many people that you probably don't even know. i really appreciate it. take care kristen!
-courtney
kristen, my name is courtney and i'm one of lisa's friends and co-workers. i just want you to also know that i follow your posts and am so deeply touched by your blogs and by your words. you are truly an amazing woman with an amazing baby girl.
like i've also witnessed with elisabeth's journey first-hand, you moms are so strong and so loving. these little girls are so blessed to have parents that do all they can to make the best life for their children.
i don't have kids, and i can't even pretend i can rightfully say "i know the feeling" in this particular realm--all that is being a mom, but i do know that i too have wondered why things happen... i like to understand things as well. i totally agree with the google thing!!! :]
i'm only 21, and i know that you have so much more life experience than i do, but i have come to learn that in time things start to make sense. just keep your faith close and your head up. you may not understand "why" right now, but hopefully in time it will become clearer for you.
again, thank you so much for sharing with everyone your family's amazing journey. you really do touch so many people that you probably don't even know. i really appreciate it. take care kristen!
-courtney
okay, so I think we posted a blog on fears at the exact same time or close to it. (mine on myspace tho) Your writings help me out lots Kris and I am so thankful for you!! I feel like here I am going through this pregnancy blindsighted, but I honestly can say that I don't think I would be able to handle myself in the ways you did/do!! You truly are a strong woman of God and it is okay to let go sometimes and not be so "strong". I will continue to pray for you and for wisdom for when Cayman does come to you!! She is so blessed to have you to call mommy!!!
Love ya!
Valerie
Hi Kristen!
I won't have much time for blogging during the next week. Our 'big day' I mentioned was heading out on vacation with the girls. We drove for two days straight and are now in beautiful, sunny, southern california. We are going to Disneyland on Monday!!
I didn't want to mention it on my blog til we get back. I figured it wasn't a good idea to advertise to the world that we are gone.
Anyways, I enjoyed this post and I enjoyed your honesty. It is definately a joy to have a 'normal' pregnancy. The kind where you can prepare, and dream, and buy cute things, and have fun...without all the concern.
I wish that I could be pregnant one more time, just to experience things without all the worry and stress, but Donald and I decided that it would be best to stop with Elisabeth.
I think that you should definately consider another child sometime. I think Cayman would enjoy a sibling.
I better go, I have a lot to get done (laundry, unpacking, etc. ) Take care!
I think Kacey says it all very well!! I cannot imagine what you went through and are continuing to go through caring for Cayman, as I have had 2 very "typical" and "easy" pregnancies! I love to read your blog and I love the honesty and the "realism" you write with! I think Cayman is beautiful and you are doing a wonderful job of capturing her day-to-day activities! From my perspective - you guys are doing a great job and above all else, Cayman knows that she is loved and accepted for who she is!!!
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