Thursday, June 14, 2012

I am the Mommy of a Child with Special Needs

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I am the Mommy of a Child with Special Needs!

If you are new here you may not know that.
If you've been a long time follower you may know and may have also realized that I don't talk about it very often here on the blog... bits and pieces, but not often.

Alexis's needs are complex.  Life gets very complicated. I have learned to always expect the unexpected because there is no A proceeds to B which then proceeds to C in our world which makes explaining hard.  There is always a 'but' when explaining a condition or situation, talking to another mom about your child's cold symptoms is usually pretty cut and dry.  Cold starts, cold is treated and runs it's course and child is back on the playground.  The inevitable question, 'what does your child have?' or 'What is her diagnosis' can spur an hour and half long explanation which usually leaves the poor mom who asked overwhelmed, confused, and sure not to ask that again!

Truth be told, I am the mommy of a child with special needs but I don't know how to begin talking about my life as a SN Mom.  Where to start or how to express what I have inside so that doesn't come out a jumbled mess.  Although, I am a bit of a mess- so that may just be fitting.  Do I start at the beginning? Do I break down her many medical issues one by one at risk of sounding like a med dictionary?  Do I not discuss those issues because they are not 'light' and 'carefree' here on the blog?

After reading an article on a new to me blog "Love that Max"... Ellen spoke today about her 'special needs mom blinders'.  She makes me realize that I am not alone in my little world here.  The thought came to me as the brightest idea I have ever had. I realize why it is so hard for me to open up.  This mom wears SN Mommy blinders too. It's those moments that I take them off and look around and compare my child to others that life truly hurts... Blinders allow me to focus very intently on a situation at hand without looking at the big picture and letting my mind wander to focus on the scary things that may be just around the bend.

I have had lots of encouragement from many people to open up and share our story... Andie Jaye from Crayon Freckles is one of those people.  Her gentle encouragement has given me the little push I needed to just take the plunge...

So I'm jumping into the icy waters feet first, No LooKin Back!  Blinders off!

I can't promise it will be perfect.  Pretty much every area of my life is NON perfect so why should my thoughts and ramblings be much different?  I can't promise it will be pretty and I certainly can't promise that I won't say or mention a thought, opinion, or feeling that may possibly offend someone -somewhere.   Truth be told... I love love love all of you wonderful people out there, but as a SN Mom it is sometimes hard to read all of your perfectly perfect blog posts where you point out the perfect activities you did with your perfect child that day.  Phew... that's off my chest.  Did I peeve anyone into leaving?  I certainly hope not because I do love you and your children... it's just... hard sometimes.

Alexis will soon be 16.  She is smart and incredibly funny.  I have know no other person who can brighten a day with a laugh like she can so keeping the blinders on, I forget she can't read past a 1.5 year grade level.  To know her is to love her.  Seriously!  This kid has empathy out the yin yang... she is quite the comforter to those who are down, distraught, or troubled, so keeping the blinders on I am able to not worry so much that she has trouble moving past simple 1st grade math.  She is astoundingly wise beyond her years in many ways as she knows, yes she truly knows, that it is what is in a person's heart that matters - not color, shape, size, age, etc.  All of these proud momma realizations make it much easier to keep the blinders on and not dwell on the fact that she is Not Perfect in this world that is so focused on perfection.

Alexis is a fragile child... she looks hearty and healthy but she is quite medically the Porcelain Doll.
There is no greater fear than the fear of losing your child.  Compound the thought and the fear with the realization that we almost lost her 3 times as an infant.  Feelings only intensify when your 'old enough to understand' child looks you square in the face and asks...

"Mom, am I gonna die?"

Alexis is being tested for another rare genetic syndrome - Congenital Central Hypoventilation Syndrome.  A a long discussion of the so far unexplained chain of events occurring in her first 2 months of life led our Pulmonologist to believe she may be one of the only 300 worldwide diagnosed with this genetic deletion or mutation in the Phox2B gene code.  Inevitably, many more are thought to have this syndrome but many are 'lost' to SIDS - Sudden infant death syndrome which is the unexpected, sudden death of a child under age 1 in which an autopsy does not show an explainable cause of death.  Researchers discovered this disease causing gene mutation in 2003 which explains why Alexis was never tested way back in 1996.  I'll discuss this in more detail in a post to come but you can catch up with an overview I had written about here.

This diagnosis would explain ALOT!

I am afraid to have the blood work done.

The not knowing all of these years has bugged the crap out of me.  I just knew in my heart of hearts that there was an explanation and I wanted it... I wanted that so BAD!

Now that the explanation is here... sitting at the door ringing the doorbell to come in - I can't open the door.



Jennifer said...

Thank you for your heartfelt post. I liked your last quote...we are going through trying times in our house right now and that spoke to me. I am a teacher who teaches special needs kids and I really appreciate hearing about your perspective as a mom. I can relate a tiny a teacher, I wear the blinders, too. :) All of our special needs kids are such unique and great people. God bless you!

Paula Boudreaux said...

You touch my heart...xoxo

Emily said...

Because your her mama and knowing makes so much more real. Hang in there girl. Sending you a huge hug!

Natalie said...

Kimberly, thank you for writing this post - I'm a newish follower so I didn't know you don't talk too much about your daughter's needs. I think that our blogs are reflections of our lives and we cant always keep things fluffy and pretty just to keep our readers happy. Alexis is your life and she has a voice too - those that matter would love to hear more about her and be here to support you, when you need us.

Its so easy to look at other blogs and see all the "perfectness" but in reality its not like that is it? Don't compare. Your family is "perfect" too. Alexis is perfect in who she is and she has chosen you to be her mom - that is so special.

I dont have a special needs child but I have friends who do and I see first hand the struggles. I have a new found respect too, as my son has just healed up after a horrendous 12 weeks in a wheelchair - it was hard on us all as a family and tested my faith in being a mom to the limit. Some days I will honestly say that I lost it completely.

All the best and fingers crossed getting the blood work done. Hugs from New Zealand xxx Nat

shelley colquitt said...

My daughter has this disease (cchs) did you get tested? does she have it?

Isa said...

You are an amazing woman. You know that!

There is something for you in my blog:)


andie jaye said...

aww...i love you! so glad that you're sharing more of who you are with your readers! you and alexis are an inspiration! ((hugs))

Nicole said...

What an amazing post!! I to, do not post much about my special needs kiddos and all the trials we go through on a regular basis enough on my blog, it's just hard.

I have 3 special needs kids and some days are horrible and make me just want to cry, I have never thought about the blinders I to have every day but it is just so true!!!

Reading your post gave me inspiration, I am now a follower looking forward to reading more of your posts!

May you be blessed with a wonderful week!!

Mama Of Many Blessings

jmommymom said...

Wow. I don't know what to say. My struggles are certainly very difficult right now as my daughter was just diagnosed with Leukemia. My world has been turned upside down. Although your daughter special needs are much different than mine, I'm sure we have felt some of the same emotions. I am just at the beginning, but I know I'm not alone and neither are you.

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