Sunday, April 21, 2013

Being A Special Needs Mom

I have been wanting to write this post for quite some time.  On many levels, any parent may feel these very things.  I don't want it to seem like my struggles are harder than the next person's.  Let me also be clear, this is not a pity party.  I would not trade this life for anything "easier" or less stressful.(well, maybe some days...) 

I am lonely.
I have an incredibly supportive family. They always come when I ask.  My husband is beyond amazing.  But I am lonely.  On weekends when everyone is off doing fun things, I am home with my kids. Sometimes when the afternoon is hard, I'll call my sister.  Knowing that she is at work, but praying that she answers just so that I may hear her voice.  My husband works long and difficult hours.  Most days, I see him for five minutes before he leaves for work.  Most nights, I am fast asleep when he gets home.  Occasionally, I remember a kiss on the cheek or a gentle rub on my leg.  

I have a seven year old toddler.
When you have a baby, sadly they grow and need mommy less and less.  My son has become so independent over the last two years, it makes me a little sad.  My daughter on the other hand, seems frozen in time.  Yes, physically, she's growing.  She's tall for her age in fact.  Emotionally and cognitively, she is stuck.  Currently, she is not ready to potty train.  I am still changing her diaper.  Something we all look forward to moving on from, I can not.  I don't know when I will be able to(though, I have hope it will be in the next few years)  I have to constantly be by her.  She has only been walking for about three years.  She is still unsteady.  She puts things in her mouth.  She has no sense of danger.  She is curious.  I can not turn my back on her.  It makes me a little sad.

I am afraid.
Every day, all the time, I fear two things.  One~that Emily will out-live us and will need to be cared for.  How scary is that?  Two~What if something happens to me?  I know where and how she likes to be touched.  I know her favorite foods.  In our own way, we communicate. At this point, I think I can read her mind.  My husband and parents are quite capable of figuring all of this out...BUT I AM HER MOTHER.  We have been connected since she was a star in the sky, SHE NEEDS ME to help her navigate through this crazy life.  I am terrified.

There isn't enough time in the day.
Everyone on the planet can relate to this.  After my son was born, and I was in "survival mode", I would stay up late, work out then sew beautiful things until my husband got home from work.  Now, I have all I can do to stay up passed 8:30!  My "me" time is grocery shopping when the kids are at school.  I have tried so hard to get creative again, but so far have failed miserably.  A couple times a month, I will paint my own nails.  Every so often, my sister and our friend will come over after the kids have gone to bed and we have a little "girls night in".  I'm trying, but its hard.

I can only have so much hope.  I still hope that I'll hear her speak one day.  I will always hold on to that one.  Maybe one day, she'll be independent enough to live on her own.  However, as she gets older, there are things I have to let go of.  My beautiful daughter will probably not bring boys home to meet her daddy.  She will probably not get married, or make me a grandma.  I get emotional thinking about that part.  We have so many hopes and dreams when we hold our little babies for the first time.  It is devastating to grieve the loss of the child we held in our minds.  Devastating.

The Guilt. 
Its awful.  I feel guilty that I caused her Dup15q.  I feel guilty that I don't do enough.  I feel guilty that she doesn't get to experience things that other seven year old little girls get to.  I feel guilty that my son has to wait for his needs to be met.  I feel guilty that we stay in because I'm afraid of people staring at her.  I feel guilty that people have to wait too long for her bus.  I feel guilty that I snap off at my husband for no reason.  I feel guilty that she doesn't "look" like a special needs child, when others do.  I feel guilty.  Honestly, the list is endless...

Small gains are HUGE victories.
Three months ago, at the age of 6 3/4, Emily learned how to drink from a straw!  It.was.HUGE.  She also can remove her own coat now, and we're in the early stages of having her dress and undress herself.  Little victories like that are what keep me going.  The smile on her face keeps me going.  The "Emily hugs"(she does not wrap her arms around my neck...she lays her head down and presses it hard.  Her love spills out when she does...its simply magical) keep me going.  The fact that I KNOW SHE CAN DO IT keeps me going.

All that being said, I AM PROUD TO BE THIS GIRL'S MOTHER.  For all of the heartache, pain, fear, doubt, insecurity, frustration, uncertainty..and all of it.  I LOVE THIS CHILD.   She is a gift.  We get through it  It could be so much worse than it is.  The fact is, I have a beautiful child that is happy.  Really, what it all comes down to, what we want for our for them to be HAPPY


  1. Tina,
    I have no words, a few tears. You are an amazing woman!! I feel alot of the same things you feel,but only as grandma. Emily always amazes me for what she has done in her short 7yrs. She will always have someone there for her & her needs. We are a very close loving family I will always be there for you & my beautiful grandbabies until my last breath. I know you have some very sad days,but just remember your babies love you & will always need a kiss to make it feel better or a sweet song to help them feel better.
    Dad & I love you with all our hearts & we will always be there when you need us.I love you!!

  2. I was crying as I read this. I know we have been cousins for your whole life but I am only getting to know you now. What I know is that you are a remarkably strong women that is filled with love and courage.No matter what you run into you come through it shining and stronger and more beautiful then ever.
    One day I am sure Emily is going to be able to tell you how much she loves you.She will also be remarkable because she has had you there step by step day by day cheering her on and giving her the praise she needs to thrive in a world that must be frustrating to her..
    Wish I was there to help and have tea and give you hugs. Remember I love you from a far and am so proud of the wonderful job you are doing.
    xo Arlene