Wednesday, April 13, 2011

Tell Me About It!

Almost every day I have to fight this urge to tell people they have no idea what I am going through.  I feel like I have to go through so much more than them every day and they just cannot compare to my life at all.  And I know this is a true statement.  Not even my WHS friends go through exactly what I do.  But this does not give me a right to think of myself more highly than I ought to.

I usually have to work really hard to not feel something like superiority over the people who complain about their children.  Because even when their kids are throwing up or misbehaving or just not sleeping, they will never have to go through what we do.  I feel like that makes me some kind of "special" as well.   And that is just not true.  I am just like anyone, I have no idea what it is like to be them or what they do day to day.

When someone tells me they remember having to wake up every three hours, I think, not for five months.  Not when you have to spend a few minutes putting the nipple on and in and around your babies mouth to "desensitize" so she wont gag repeatedly.  Not when you have to pay attention for every second you are squeezing the bottle so she doesn't aspirate.  Not when you have to hold her until she burps so she doesn't just throw it all right back up.  And sometimes, even when she burps and you aren't jostling her, she still throws it all up and you have to start all over.  Not when on top of all this, you have to clean out bottles and pumping supplies and pump every three hours. 

Its not just like my other two.  I am exhasted, mentally and physically.  I am usually drained emotionally also.  It is so hard to not be able to just enjoy feeding my baby.  There is no bonding time, no loving stares, just hard hard work.  Most of the time she refuses my feeding her after a few minutes.  And when she starts fighting me, she throws up.  Luckily she eats very well for Mark.  But it is still frustrating and hard to accept that I can't make her do what she needs. 

Every doctors appointment we go to its there in big black letters "FAILURE TO THRIVE"  And that feels terrible.  I feel like we aren't able to do anything for her, especially that I can't do anything right.  And the doctor says, I bet you will be happy to get that cleft fixed so people will stop asking questions.  No, not really, she is still tiny.  They will still ask.  And I don't even have a problem with that.  Mostly I love to talk about how much she is "missing" and how well she is doing.  Its the look after I start talking I can't stand.  Either pity or something like horror.  And sometimes even "You didnt catch it in time?" 

Its hard to see regular babies.  I don't envy others, but when I see them, it reminds me that she won't be like them.  I can accept this in my head, but my heart doesn't always follow.  Truly, I feel like she is just another baby until I see a four month old holding their body upright staring lovingly at their daddy and giggling.  She can do none of those things.   

My mom will tell me that I am doing so much work for her.  That there aren't a lot of mom's who would spend that time pumping like I do.  That there aren't a lot of couples who would even still be together.  That there aren't a lot of people who would choose life for her over an abortion of convenience.  But I told her this: I don't work harder for her than the other two.  I just provide what she needs.  Isn't the saying find something you love to do and you will never work another day in your life.  We love our babies. I would think it would be harder to be a mother of a person who grows up to be a murderer than for our baby Mercy.  And this tiring thing we have to do, it isn't work.  Its just like doing homework with Melodee or kicking a ball with Malachi.  Its just what needs to be done so we do it. 

Of course I am tired.  But I was tired before.  When I had my two kids who are "regular"  We chose this life of parenting and we are sticking to it.  It totally makes me crazy when people who have children want that life they had before.  The "fun" of partying and drinking, going out, having fun and who knows what else.  How is that more fun that snuggling at bedtime making up stories?  When did your children become something to tolerate until you can do something more "fun."  Of course, I love to go out with just Mark every now and then, but isn't the point of having a family, being a family?   It seems to me like most people just want kids because they "need" them and just put them up in daycare until the weekend or parties where they can dress them up.  Parenting isn't glamorous or even fun most of the time.  Its hard work.  Loving your children means teaching them right from wrong and having to work consistantly to bring them up.  If raising your kids is just trying to grow them up and get them out, just to say you had them, you are sorely missing out. 

Most days I am so drained I feel like a failure.  The house is never cleaned properly, there is always laundry to be done, and most of the time I am even very grouchy.  I feel like I can't parent my kids.  I lost my temper so easily.  I get depressed and wish I could stay in bed all day.  I am trying to be better, trying to do more things that are fun.  Now that it is warmer we can play outside, which is good for everyone.  I always start to get wary because sometimes I feel like I just want to get to the end of the day, which is so not what being a family is about.  It is not just tolerating life until Mark gets home.   So I am trying to enjoy what I have.  Trying to help my kids have more fun and not be so worried about the things that don't really matter.  Luckily, I know that I don't have to fix this all tomorrow, just so long as I am trying to day by day.  Because being messed up isn't bad as long as you are working on getting better.  Right?

3 comments:

  1. You are so right! That you are even thinking about it and trying to do better shows a lot about your parenting attitude. You are a great mom Kenz. I know this is super hard and you are super tired but you are there for your kids and that is what they will remember. You and Mark are working together to make this work and they will remember that.
    They won't understand right now allt hat you are going through and doing as their parent but soem day they will and I'm going to bet they will honor and thank you for that and for your example.
    I thank you for your example and for sharing your struggles with us.
    Praying for you all.

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  2. As someone who still...14 months later...finds herself having "bad days" when it comes to accepting the syndrome and all that goes with it, all I can do is pass on what others have reassured me: It is completely okay to feel stressed and overwhelmed by it all sometimes. That you feel "special" because you are dealing with so much more than most mothers could ever even imagine is normal, too...and you've earned the right to feel that way. Reality check~ No one WILL be able to understand how you feel-- not even those of us with children with WHS-- because we each have a unique, personal story on top of the syndrome that makes us as unique and different from one another as our children are from their peers. Just know that you are not alone, and when you find those sad days creep up on you, realize that they do pass by quickly. You are not "messed up." You are an amazing mother, and Mercy will thrive with your love and care. Hang in there; my heart is with you! xo

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  3. Hey Kenzie.... You are not alone. Really. Although - you are totally right... all WHS cases are different and even with WHS you feel alone in a crowded room. I firmly believe you do what you can until you "can't" anymore. I pumped for Alexander until Christmas... and then I was just done. I gave myself permission to be done. You should maybe read my last post - I think we might be thinking along the same lines. Alexander is almost a year - and after a year of putting myself clearly at the bottom of our list of priorities - I'm trying to move myself slowly up. Maybe a night/weekend away would do your heart good. You would still be a rockstar mom. Do you want to come here and I'll take your kids for a weekend and then we can trade? :) xoxoxoxo Don't be afraid to "be __________" That blank might be afraid, or overwhelmed, or whatever. It is true - and that is what life is all about.
    Kristen

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