Can we offer hope and support for one day on CafeMom?

[asil]

This is my time.  It's late at night, or early morning, depending on how you look at it.  The girls are sleeping and so is my fiance.  The only noise is snoring and my typing.  I used to give anything for the ME time every day.  But lately the ME time is more a curse than a sought after jewel.

Where do I begin to explain this?  Well I can try to fit it all into on short paragraph, but it will not do the past justice.  My oldest girl was born in 2007, 4 weeks premature.  Suffering from IUGR it was an emergency c-section.  She was immediately diagnosed with DDH, developmental dysplaisia of the hip.  At 25 months she was diagnosed with IHSS, idiopathic hypertrophic sub-aortic stenosis, ASD, atrial septal default, and HCM, hypertropic cardiomyopathy.  In her short life she has spent a total of 6 months in a Pavlic Harness, 6 months in a spica (body) cast, and has endured countless x-rays, ultrasounds and cat scans.  She didn't walk until 16 months old, hasn't gained a pound since she was 6 months old, but is full of life!  She has been under total anesthesia 4 times, and has spent a total of 12 days in the hospital not counting the 5 in the NICU at birth.  And this is not the end for her.  She already has her 3rd and hopefully final hip surgery scheduled for Feb of 2010.  She will have at least one, but more than likely numerous open heart surgeries througout her life.  To top it all off, she has intolerance to both fructose and lactose, which always makes life fun!

My youngest girl was born in 2008, 6 weeks premature.  Again, suffering from IUGR it was an emergency c-section.  She was diagnosed with apnea at birth.  She was tiny, and wouldn't eat.  After 10 days in the NICU I was able to bring my baby home, on heart medication, a apena monitor, and a prayer.  She was hooked up to this monitor 24 hours a day for the first 9 months of her life.  She has had constant eating issues.  She is lactose intolerant as well, but also suffered much more severe reflux than her older sister.  She finally started walking now, at 14 months.  She has yet to say a word, her first word.  She babbles and plays, but is very behind in speach. 

So... with that in mind...

I sit here at night and read posts, and make my replies.  I don't think that I am the best mother in the world, but I am the best for my children.  I make my informed decisions, but I have learned that I have to be informed, no one else is going to help me make the right choices for my girls.  I read all the holiday posts about the biggest, best, and most expensive gifts that will be given.  I read posts about huge birthday parties, baby showers, and other celebrations.  I read fights about nursing or formula feeding, co sleeping or using a crib, and more.  I read reply after reply of moms battleing for what they think is best, for someone elses life and child.

I won't lie, I have my opinion, and have fallen victim to the lure of the fight.  The pure enjoyment of some of the drama, and really, feeling that someone is doing something that is not the BEST in my eyes, for their child.  I learned however, that there isn't time for me to worry about what others do with their children. I have met many moms on here that think much differently than I do, maybe they formula fed from day one, or maybe they let their child watch tv, or drink soda.  I have met moms like me, different from me, and some like... say... YOU!

Somehow when someone offers support during a hard time, you see past the fact that they raise their children differently than you would.  When you are worried and find a post that makes you laugh, you laugh regardless of if the mom feeds her child as you would.  When there are pregnancy worries and mom's offer advice, you see past things that they do while pregnant that you wouldn't dare think of.

When you have a child with a serious medical condition, it changes you.  It changes how you see others, and every day in your life.  I no longer worry about the biggest and best presents, I worry that this may be my oldest girls last Christmas.  I no longer worry about huge theme birthday parties, I worry that next year she may have to spend her birthday alone in a hospital room.  I  no longer worry about the empty calories that soda or chocolate offers my child, I am overjoyed at her attempt to eat something, anything at all.

I sit here at night and cry over stories of other heart babies, and hip babies.  I read posts, journals, and comments of those mothers with kids that have NO health issues, and those that are ridden with health concerns.  I feel for those mothers who are bashed for asking questions, speaking out, or sharing their story.  I wonder WHY it is so important that each mother is right, her own way of raising children is right for every child in the world.  I wonder how mothers have so much time to bash, belittle, and bicker with other mothers.  Isn't it important that we all have a place to go and vent?  to ask questions? for support?

I don't see posts like "i HATE blah blah blah" or "i don't want to start drama but..." in groups for those with health issues.  I don't see  moms bashing each other for the way they raised their kids.  I am a member of many heart groups, and never once has a mother in there put me down for letting my girl watch Spongebob for 48 hours straight, eat chocolate, and drink white soda.  I hear supportive comments, I see moms applauding me that I got my girl to eat anything.

I search the internet for information so that I can make informed decisions about my children and their health.  Let me tell you, the results of my searches are much more than if you should nurse or not.  I get results with death statistics of the conditions my child has.  I get information on the different types of surgeries available, and stories of hope and sorrow.  I do want the best for my girls, but sometimes the best is more of the BIG picture than the little things.  I know nursing is not a little thing, but in the grand scheme of things, it's minimal. 

I want my girls to live full happy lives, but then realize that my 2 year old has spent ONE HALF of her life unable to move her legs.  Wouldn't you want some chocolate if you were stuck in one position?  My youngest had her skin die on her chest due to the heart monitor, wouldn't you let her have a lick of that ice cream cone?  And, yeah, if my girls feel bad, nothing works better than Spongebob, so why not?

I wish nothing bad on any child.  I wish that no other kiddo would go through what my girls have endured.  I wish no parent the ache of not being able to hold your child.  I wouldn't wish the pain of saying goodbye to your child, not knowing if she will ever wake up again on my worst enemy. 

In my silence, I hear my girls breathing, one rolls over in her bed.  Yes, I'm on cafemom.  I don't feel relief that I just made a mother feel like she is second best, or feel the victory of another fight won... I feel the happiness that I know my girls are still alive.  Anything could happen, to my child or yours.  I would rather live my life sharing our story, helping other moms in a constructive way, and making the most of what I have... than sitting on cafe mom fighting about what is best for a strangers baby.

It's a curse the silence.  It leaves you no distraction.  When my girls are awake, the house is alive with energy.  A one and two year old running, playing, laughing, screeching... In the silence I am alone with my thoughts, the internet and the tv.  I pains me to read any  more medical reports.  It sickens me when I read what my oldest girl will face, and what the risks are for her sister, of having the same ill fate.  I have nothing left but my girls.

Having kids with health conditions humbles you.  It is no longer about you, what you did for them, what you can do for them, the biggest, or the best.  It's now about what science and medical doctors can do to help your child live a "normal" life.  Having a child with health conditions makes you open your eyes.  It doesn't matter who is right or wrong.  I am sad that my biggest concern is not what another mother does with her healthy child, but my concern is if my daughter will look into my eyes ever again.

Hold your babies tight.  Don't worry if it's the biggest, best, or most reccommended thing.  Do what you can, while you can.  In February, I again have to say goodbye to my oldest, not knowing if she will wake from her third hip surgery.  I know as I say goodbye, there will be moms feuding over which car seat is the best, or what tv program is acceptable for toddlers.  Just think that there are bigger things.  There are kids out there who won't wake up in the morning.  There are families in turmoil, living at the clinics or the hospital.  There are children unsure of their own future, scared and alone.  There are kids that want to make it to christmas, regardless of what is put under the tree.

I know this journal is a lot of babble, but it seems like my curse lately.  The house goes quiet.  I can reasearch and worry, read stories and cry... or log onto cafe mom and HOPE.  HOPE that there are replies to my posts, answers to my questions.  I can hope that my input may help another mom with her situation.  I can hope that there is another silly post or picture to make me smile.  I can hope that I may meet another mom who is like me, or mabye 100% different. 

I choose to come on cafe mom.  It has been the source of a lot of great information, inspiriation, and support for me.  It has also been a look at the unkindness, rudeness and beligerance like no other.  I never knew people so stuck in their own lives that they don't see any other options but their own.  Take into consideration... I did NOT choose this for my kids.  I did NOTHING to cause this, and there is nothing I could have done to prevent it.  Now what do you say?  There is no drama.  There is no should have, could have, would have... My daughter is sick, and her sister could be as well.  Please skip sharing with me the "if you only" stories, because that is untrue.  Please skip the "i know what you're going through" because more than likely you don't.  (only 5 in one MILLION children has the same cluster of heart conditions my daughter does).  But... spare those mothers doing what they think is best.  Instead of ripping a mom a new one for what she chose, offer support, information, and maybe some kindness.

It saddens me to see such an "underbelly" to some moms.  You see their profile page and children and would never think that they would have such a foul mouth, rude, or ludacris mother.  You wouldn't think that someone in CA would have such issues with a mom in NY over what she choose to fed her child. 

Maybe each and every member of cafe mom, for the holiday season, for my daughters... could extend a ray of hope to a mom with a child that is ill.  Learning disabilities, birth defects, and genetic disorders are hard to deal with.  That doesn't cover all the issues that mom's need support in.  Premature birth, self esteem issues, and childhood sickness are other areas.  Even if just for a day, Christmas, every mom would search for a mom that needs that ray of hope, that support, that virtual hug... Cafe mom would be a happier place. 

That is my Christmas wish... that I log on on Christmas day and see messages of hope, love, support, and help.  I wish that I could have ONE NIGHT to spend MY time reading posts of moms helping other moms, offering their ideas, a hug, or even a "hey I don't know how you feel, but we're thinking/praying for you this holiday season".... just one day.

ONE DAY for the time i have for ME time to be filled with something other than worry, regret, sorrow, and battles.  Let me have just one day that I feel uplifted when I need it, Let me have one post that I can go back to time and time again and reread those words of hope... ONE DAY

[MSugarKane]

Dec. 23, 2009 at 5:53 AM

This is a well written, thought out post and I hope many read it.  There are always life struggles throughout life , its the manner we propose to manuever and take care of our struggles is the key to our family's happiness.  Your happiness too!   Merry Christmas to you and your family!