Friday, February 10, 2012

Special Needs Spotlight: Getty



 


You never know the power of love until you have a child," was a phrase I heard all the time while I was pregnant with Miss Getty.  Mark and I welcomed her into our hearts and our lives on March 25, 2010.  She was perfect in every way.  Her eyes were wise and her demeanor spoke of trust and calmness.  Almost like she had a story to tell us right from the beginning.  Getty did have a story to tell. At 4 months of age, she was diagnosed with Spinal Muscular Atrophy, which turns out to be the #1 genetic killer of young children, and rarely do children with SMA type 1 live past their second birthday. Mark and I unknowingly had passed on this horrible disorder to the absolute love of our lives.  But the story does not end there, in fact that is where our story began.  You see with the diagnosis came an immense understanding of what it means to love, what it means to fight what you believe in, what it means to have your soul fulfilled with every breath that our daughter takes.  Getty is a graceful and gallant warrior and we are just so honored that she chose us to be her parents and her loyal servants.

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Miggy:  Can you take me back to the day you Getty was diagnosed with SMA and the realization that you now had a child with special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Kate:  You know when Getty was first diagnosed, the idea that she was special needs never occurred to me.  She was still physically doing the same things as "regular" 4 month infants could.  It was more of the prognosis that paralyzed me.  Being told that your daughter will not make it past her 2nd Birthday was really tough to swallow, especially since she was so healthy during the pregnancy.
   
I think once we started getting in touch with state, county, and city resources is when I guess I first heard special needs.  I know this is going to sound different I am sure, but to us Getty is well...Getty. There was never a moment that hit me that I had a special needs and I think there are two reasons for that.  1) SMA, especially type 1 is a progressing disorder and if the parents do not act quickly with interventions, might not be able to battle the 2 year statistic.  SMA is not readily known about so parents literally have to become the doctor, the advocate, the nurse, the respiratory therapist, physical therapist, the nutritionist, etc. in a very small amount of time.  So having said we are now at a point where Getty's health is stabilized, her diet is amazing, she has doctors that finally "get it", and I think as a family we are able to rejoice and enjoy what we have.  2)  My career was as a high school teacher.  I stopped working after Getty's diagnosis, but i worked in inclusive classrooms with all kinds of kids. "Special needs" kids would be a part of my class, but it wasn't something that needed to be addressed. They were my kids, we all worked together, and there were no labels placed on my students.

So I guess when it does affect me it is when I have to tell people what Getty can't do, and I only do that when I have to.  If you come into our home, Getty's world is absolutely modified so she can stand, she can move her arms, she can talk, she can eat, she can be challenged mentally.  This is our new normal as a family.  I have let go of what I thought motherhood was going to look like.  I didn't want another day wasted when I was grieving what i don't have and what Getty can't do, when she is here and she loves life and I love being her mommy.
  


Miggy:  Most syndromes or conditions seem to affect each person a little differently.  Explain how Getty’s specific "brand" of SMA affects your day to day life?

Kate:  Getty has always been a very patient kiddo.  I think Getty would be considered an average type1.  She requires 24/7 care, like all type 1's.  I do not work anymore outside the home, I am her full-time care giver.  So having said that, it has made me understand that my identity has definitely changed. I think that in itself is difficult for lots of people.  I got to come and go as I pleased before she was born. I worked all the way up until 40 weeks and then had her at 41 weeks.  I am a extrovert and a type A personality.  So taking on this role as full-time mother and care-giver was an adjustment so say the least.  I have never regretted my decisions to stay home, but I have struggled with being in the home all the time with Getty.  I would love to take her out and see the world on a whim, and that is just logistically very difficult.  RSV season is a good 5+ months out of the year, where we are in "lock down."  All of our time is indoors and that can get a bit claustrophobic.  I don't mean to put this lightly at all.  Mentally it can take a toll on me, but there are ways to "bounce back" and give 100%.  But you get used it.  It has been a big adjustment, more so because of my personality. :)
  
Getty depends on me in her daily life, so making her food, feeding her via g-tube, physical therapy, suctioning her, watching her vitals, entertaining her, teaching her, letting her experience activities, dressing her, changing her, baths, etc. It is 24 hours, and that includes naps, for which I participate with her. :) 


Miggy:  What is the biggest worry you face for Getty?  

Kate:  I worry that someone will judge her for what they see she can't do.  That hurts my heart just thinking about it.  I don't think our society has done a good enough job making any child with special needs an accessible environment and overall understanding and embracing abilities.  Holistically, now as a mother with special needs I see how children are put in a category and left for self-fulfilled prophecies.  We all have amazing qualities and I worry that Getty will be judged for what she can't do, instead of what she is amazing at doing.  So I think that is what worries me.  I would hate for her to feel the confidence and the love she feels with her loved ones, only to learn it might not be the same way in the outside world.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
  
Kate:  I think our new vocabulary can seem a bit different for most people.  I guess saying things like, the probe isn't working, how much feed does she have left?, what are her numbers? I will say that on two occasions, Getty crashed, which means that too many secretions were in her mouth and so her vital alarm went off.  It is an emergency situation.  It did happen at the zoo.  We revived her with suction and her cough assist machine.  All was well.  Her numbers were back up and then we continued at the zoo. She was fine, we were fine and we were off to find the tigers.  As an SMA family, you learn the art of triage and you have to be ready at any point. But you also have to live you life and when things like this come up, you have to perform.  We also promised Getty we would see the tigers, and we couldn't leave without seeing them.  It sounds kind of twisted, but that is how we roll.  She told us she was fine, her vital numbers were great and so we continued to the tiger exhibit.  I can only imagine how that looked to another human being. :)





Miggy:  How can people best approach or respond to Getty? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
  
Kate:  Best approach would be to talk to her like a normal 22 month old, she knows and understands what you are saying.  Even though she may not respond she still knows what is going on.  In our house she is a part of every conversation.  She can grunt in certain ways to let us know that she likes or does not like something.  She also is doing really well with eye gaze.  So we will hold up two items and she will pick between them.  So treating her like a regular kid is really great.  I just wish overall there was more of an awareness of SMA.  As a family we are doing what we can with our foundation to make SMA a mainstream conversation in our community.  I think what is more awkward and hurtful is when people just stare at her.  It is kind of creepy, so to try and lessen the awkwardness, I will start the conversation and let them jump in.  Hurtful would be someone asking me or her "what is wrong with her?"  That hasn't happened many times, but it usually is a child and my response is that, there is really only one difference between you and Getty.  You have strong muscles and she has weak muscles. 


Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Kate:  Patience.  Not for Getty, but for myself.  I am learning that life for me is now at Getty's pace.  At first that was difficult, but now I am realizing that when I am at her pace, I notice so many more nuances about Getty.  She is such a sassy little girl and teaches me all kinds of ways to love another human being.  She is spunky, she is so intelligent, and I am just so in awe that she chose me to be her mommy.


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I want to thank Kate for sharing her beautiful Getty with us.  Love those pouty lips!  And I love what Kate said about focusing on what our kids can do, instead of what they can't do.  So true.  You can go to The Getty Owl Foundation to read more about Getty and SMA awareness.  

As always if you know someone who would love to participate in this Special Needs series, please email me at thislittlemiggy at gmail dot com.  

Have a great weekend!  


6 comments:

  1. She seems wonderful, thank you for sharing her (and your) story.
    Much love,
    Miri

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  2. Thank you so much for spot lighting beautiful Miss Getty and SMA. There is a wonderful foundation our family supports that is for SMA research. I hope you will and your readers will check out the Strong family--they are amazing.

    Miss Getty is truely beautiful.

    --Mari

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  3. She is a beautiful girl! Wow! And, you, the mother are so well-spoken.

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  4. Linda P.8:42 PM

    Oh, that precious Getty! Thank you so much for sharing her with us, Kate and Miggy! I loved learning about her here.

    I also went over to The Getty Owl Foundation and looked at your blog, Kate. What a great mom you are. I loved seeing how you let Getty experience so many things in her own way--gingerbread house decorating, ice skating, olives on the fingers, and more! I know your life is very challenging, but you are doing such a great job!

    I am a mom of a special needs young adult son, and it is so helpful and encouraging to read about other moms and how they face their unique situations.

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  5. She's beautiful, what a treasure! I loved this post... Thank you for sharing.

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  6. I would like to thank Miggy for giving me the opportunity to introduce her readers to my Miss Getty. I am sorry it took me so long to respond. She is such an amazing human being, one who continues to beat the odds against SMA. We will be celebrating her 2nd birthday this month and we could not be more over the moon. Thank you for giving parents a place to introduce their children to the world. Every child is perfect in their own way. Thank you for giving a spotlight to so many of them.

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