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Tuesday, June 28, 2011

Letter to the new mother.

I've been thinking about this ever since I heard the horrific news of what happened in Las Vegas.  The truth is, probably this mother had other issues and would have done something terrible anyway - but that doesn't excuse the fact that false information circulates still about Wolf Hirschhorn Syndrome.  So here it is - my letter to a new mother (or even a mother who is still struggling with this reality).

Dear New Mother,
It will be ok. 
Please remember that life can change in an instant.  There are people already in your life that you love unconditionally, and you would go to the ends of the Earth for them.... don't worry - you will feel that way about this baby also.  It is ok to be mad at God.  Most people who have traveled this road before raged against him at one point or another, however ~ do not let this rage consume you.  If you had a relationship with him before, feel free to pray, "why?" ... just don't stop praying.  At some point he will answer your questions and heal your heart.

Don't blindly trust what you hear.  Even if it is from a doctor.  People are all fallible.  Doctors make mistakes.  You are the best expert on your child.  Your mommy gut will not fail you.  Listen to what doctors have to say, ask questions, ask more questions, go home - think about things, and make the decision that sits well in your heart.  Your best resource is going to be other parents.  A doctor, in 2010, told us that Alexander would be terminal and to let him "pass gently to ease his pain."  This wasn't a doctor from 1950 ... we were devastated because we felt the doctor was talking from expertise.  The doctor was speaking about a syndrome she had never seen based on research from 1950.  Since then, Alexander eats, smiles, coos, socially interacts, giggles when he is happy, and gets angry when people take something he wants.  Almost all of Alexander's Wolf Hirschhorn friends are walking ~ at least with assistance.  And, honestly, is it the end of the world if a child doesn't walk?  Use the other parents as a sounding board.  Then you have access to opinions from people from around the world.  The medicine that helped Alexander digest his food? I found out about it from another mom and went to several doctors until I found a young guy who was up on his research and knew this drug was used for G.I. emptying. I would not have been able to do this without the community of support of people who are going through the same thing.

Get your child therapy and treat your child normally.  This is probably one of the most important things I can tell you.  If you see your child as an outcast, so will others.  Throw away the chart of "appropriate milestones."  Call Early Intervention.  Get yourself a copy of Gross Motor Skills for Down Syndrome and Fine Motor Skills for Down Syndrome.  These will help to guide you in teaching your child how to reach milestones.  Some milestones we don't realize are milestones because they happen so quickly for other children. (Some therapy ideas can be found HERE.) Use these tools ~ but don't let these things rule your life.  This brings me back to the normalcy of it all.  Get a good reclining high chair - that sits up to the table.  A great one is from Fisher Price.  Put your child in it for every meal.  Alexander has sat at the table with us for every meal since he was tiny.  Even though he didn't eat, he watched us eat and socialize.  We talked to him.  How can I expect him to eat pizza with us someday - if he never sees how amazing pizza with the family is? Alexander goes almost everywhere with us.  Alexander is not the outcast of our family.  Raymond and I never talk about "we can't do this" because of Alexander in front of the twins.  The twins are always encouraged to include Alexander to do things with them.  The 3 kids take a bath together.... every single night. Simple things like this help to solidify your family.  I expect high things from Alexander.  I will love him no matter what, but I will continue to hold high standards for him.
This is me - holding my first born. She was also in the NICU

Lean on us when you need a shoulder to cry on. We have been there. We understand. However, let me caution you.  You must try to find some happiness in life.  I say this cautiously because.... we want you to share those dark moments when you need support.  In the early days and months, people will come to you with open arms and hold your hand as you cry.  Because we have all been there. Just try to make sure you aren't sinking into the abyss that threatens us all.   We want to help you out of the darkness.  We want to listen to you, cry with you, stand strong with you.  We all understand.  But none of us can sink with you.  This may seem like a contradiction, but this is sound advice. Even if it is a struggle, try to find something happy every day.  If you can't do this, please take some time to talk with someone... to find happiness.  Your life has changed drastically, so it may take some time to fully accept your new reality.

Stay connected.  Don't let this syndrome become the end all to be all that rules your life. Again... it may sound like a contradiction, but you have to find a happy medium.  You can acknowledge that your life has changed without becoming completely immersed. And finally...

Love your child. Love. Your. Child.  All children are gifts from God.  You could have a child and realize later in life they were autistic. You could have a child and realize later in life they were going to be wild and sneak out, etc..... you would still love these children.  So love this child.  Give yourself some time to absorb all this information. Everything will be ok. You will love this child.  And this child will love you. Wait and see.....

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4 Comments:

At June 28, 2011 at 10:44 PM , OpenID joanna said...

You are an amazing person and mom!

 
At June 29, 2011 at 7:00 PM , Blogger Jessmarie9 said...

Wow! That was awesome. I'm crying. I wish that Baby Brady's mom could have read that. You should post this on WHS.org too. It could help so many people. Love u!

 
At June 29, 2011 at 11:47 PM , Anonymous Anna said...

Love it. And I agree with Jess, I think you need to post it on the wolf-hirschhorn website too..xxox

 
At June 30, 2011 at 12:00 AM , Blogger Non-Stop Mom said...

I love this, Kristen. You are an amazing mom. Your kids are blessed to have you in their lives.

:)
Amy

 

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