Friday, March 02, 2012

Special Needs Spotlight: Davy





Thanks to my readers, today I'm fortunate enough to be featuring the incredible Ruth Schultz and her equally amazing daughter Davy.  Several of you sent me emails and links to Ruth's blog and I must say I girl-crushed immediately!  I love Ruth's candor and honesty and I love her little Davy girl.  Those big, blue eyes kill me.  Additionally, the whole Schultz clan seems super cool--including Dad who happens to be the creator of a little show called Yo Gabba Gabba.  (Whisper scream!!)  We sorta like that show.  I hope you all love reading this Spotlight as much as I did.  Additionally, I hope you noticed a little spruce up on the blog.  I added some links to the top that should make it much easier to find some of my most popular content--including the Special Needs Spotlight.  Yay!  Without further ado, here's Ruth and Davy...  

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Hello there, I'm Ruth.  First off I have to say, Miggy, I think this is so awesome what you're doing.  I have learned so much by reading about all the amazing mothers and their children in these spotlights.  I am so honored to be included amongst them.  In fact, because of the amazing internet, I am honored to call some of them my friends.  I am a mother to three highly energetic boys and a very special lady, named Davy.  Through taking a genetic test called microarray, we found out that my Davy girl has a rare chromosome deletion. I have started to blog about her in hopes to find others who have the same deletion.  Davy has a micro deletion of 1p31.1-1p31.3.  She has panhypopituitarism, which means she makes NO hormones at all, the scary one being the Adrenal hormone.  So when Davy gets the common flu, it can turn deadly.  She has a low immune system, which again, is not a great combo with the whole adrenal issue.  She has a cleft lip and palate, congenital heart defects (asd, vsd, pda and had a CoArc).  She had a surgery for malrotation of the intestines, and a g-tube put in to feed her.  She has GERD (severe reflux) with esophagitis dysphagia.  We most recently have found out that she has hypothalamic obesity.  She is globally delayed and sees a physical, occupational, speech and feeding therapists.  Phew, I got tired just typing that.  But, can I just tell you that Davy is the most loving and happy child you will ever meet.  She absolutely loves people.  So if you ever see us, please come up and say, Hi.   Except if you are sick, then please just run in the other direction. 

   
Miggy:  Can you take me back to the day you knew your daughter would be born with special needs?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Ruth:  That day will be forever burned in my mind. It's like somebody ripped your heart out of your chest and you are left numb. There is a definite grieving process one goes through when they find out their child is going to have special needs. Sometimes this can happen before your child even gets diagnosed with something. I happened to do it before Davy was born.  For the first time I did the AFP screening with this pregnancy, and wouldn't you know, it came back positive for something. SO we knew Davy would have severe special needs, In fact, there was a high chance of her not even surviving the pregnancy, so I was pretty much a basket case for 6 months. I actually went to a therapist during that time and I would highly recommend that to anyone going through something like this. Or you can email me and I will do my best to talk you through it.  And now, two years later, things have of course changed. I am no longer a basket case (well maybe sometimes).  My world did not end, my world just changed.  Life is very different from what I thought it would be, but different can be good. You adapt…You really have no choice.  As hard as life is for us, it's equally amazing. 

  
  
Miggy:  Like a couple kids I've spotlighted Davy has an unnamed and unknown condition--in what ways does this make your particular journey difficult?  Is there an upside to not having a name/history/precedent?  

Ruth:  This is such a bittersweet thing.  I remember wanting a name or a syndrome so bad, so I could know what to expect. I actually wanted to label my child. I think I naively thought this would provide some sort of comfort.  All my doctors (like literally teams of doctors) pretty much have had their hands in the air when it comes to Davy. They could only guess what her life would be like. This was really scary at first. There were a lot of ugly scenarios told to us. They even asked us to think about terminating!!  Really? You say this just after telling me, you don't know what's going to happen to her?     No thank you.  I really should send that Doctor a video of Davy smiling and throwing a peace sign.  Take that genetic counselor!  But there has been such an upside to this type of situation.  1. Doctors do not forget Davy, ever.  All of CHOC hospital knows her.  She is like the ultimate puzzle for them. One in a million.  2. She has no limits put on her. No box to put her in.  I have so much hope for her future. She is always progressing,  It may be at a slower pace, but it's happening.  I know what a blessing this is. 


Miggy:  Explain how Davy's specific special need affects your day to day life?

Ruth:  During flu season, which is right now, life shuts down for us.  We can't take Davy anywhere.  It's hard not being able to do the typical family things together.  I know it bums my boys out.  If there is a family gathering and one person is sick, we don't go.  But we are getting used to it.  I deal with 8 therapy appointments a week, homework to do with her after those therapies, constant doctor appointments on top of that.  So many surgeries (my least favorite part).  Numerous ER visits, round-the-clock meds, daily shots.  She is always being subjected to mini torture sessions (blood draws, labs, x-rays).  We have to deal with a feeding tube, which Davy is always pulling out. You always have to be on high alert with her.  Because Davy aspirates, we have to be very careful that she doesn't find a stray cup of water in the house and I have to watch her like a hawk during bath time, she always is trying to get water in her mouth. We are allowed to feed her some food by mouth now and that has to be done very carefully and can take a lot longer then a typical child's meal time.

Davy doesn't play like a typical child, she doesn't get entertained by toys or TV.  Its pretty much just me.  She also doesn't nap well, it's usually 20 minutes.  I have to say the no napping is the worst.  I used to have to deal with insane amounts of vomit, that has since been traded for poop.  Gross, I know, but homegirl has some tummy issues.  You really have to prepare when you take Davy anywhere.  I always have to have an emergency kit with me.  I have forgotten to refill important meds before traveling (oopsy)...which with her, is life threatening.  In fact traveling long distances with her trapped in her car seat has put her into adrenal crisis.  So traveling in general is just plain difficult.  So I try to fly if I can, except then there is the germ factor.  SO I pretty much have to always be on my A game.  It's hard to have a bad day as mom when you have to take care of Davy, which is incredibly exhausting.




Miggy:  What are the biggest worries you face for Davy?    

Ruth:  One of my worries is not even about Davy.  It's my three boys.  I worry how this is affecting them.  A lot of my day is swallowed up by Davy's needs and that can be really rough on them.  When Davy is in the hospital they get bounced around and have to deal with a tired emotionally drained mommy.  I pray this doesn't ruin them, I hope it makes them stronger.  As for Davy, I worry pretty much about everything.  C'mon I'm a MOM it's my job.  Thinking about her future can drive me absolutely bonkers.  So I am trying to take one day at a time.  Her health issues can be really scary sometimes.  One of Davy's conditions, Adrenal Insufficiency, turns an every day stressful situation like  the flu into a life threatening emergency.  Just yesterday she got a runny nose and by the end of the day her body started shutting down and going into crisis.  I always am afraid of this happening when I am not around. For that reason I only leave Davy with three people, who are all trained.  But, I can only hope that Davy will be happy.  Her life will not be easy, I just hope that she can get through it with her big clefty smile.  Besides if any kids make fun of her, I will karate chop them in the head!!!  I am SO not kidding.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Ruth:  My favorite was when I took Davy to the park, pre-clefty surgery. This little boy saw her and yelled, "MOM, that baby's nose has sucked her lip up into her face!!!" The Mom scooped up her child and bolted, but I was giggling.  I can see why someone would think this was NOT funny, but I loved Davy's cleft and the boy described her pretty accurately, really.  He obviously was not trying to be mean, he was just stating a fact, loudly.   Seriously I have had many funny times with Doctors.  I could write a book.  I think the smarter the Doctor the less social skills they have.  That can make for some funny conversations.


Miggy:  How can people best approach or respond to Davy? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
  
Ruth:  You know, you can't help but get your feelings hurt sometimes , I am still human. But I know people are not intending to be mean. I always try and take that into account. I actually give props to anyone who will ask me questions.  The thing that I hate the most is when Mom's shush there kids and quickly whisk them away (like the at the park) when they make a comment about Davy.  I would much rather you bring the them up to Davy and ask away.  Make this a learning opportunity for your child (and you).  Davy loves people and I would love to answer why she has food going into her tummy and not her mouth or why she has a weird nose (yes I have heard that) and scars.  I have to say for the most part people fall in love with Davy.  She is always saying Hi or "peace" and smiles so big at strangers.  She's kinda hard to ignore.



Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?
   
Ruth:  You mean besides all the medical, right?  Because I feel like I went to nursing school.  I would have said patience, but I don't think I have quite mastered it cuz I keep having to learn that one again and again.  I have learned that I have limits to what I can do now.  Which means I have learned to say the word, NO.  So instead of helping, I have learned that I have to ask for help, like ALL the TIME!  It's hard, really hard to always be the needy one.   But most of all, I am constantly learning about Love. Love from my family, friends, community and total strangers.  My blog has been an incredible source of support. I have so many people that have reached out to me and I very thankful for them. 


Miggy:  Finally, I have to ask... can an introduction between my daughters and Brobee be arranged?
  
Ruth:  If you come to down to SO-CAL, I will personally introduce them to the whole Gabba gang. Maybe a dancey dance is in order?  I know Lamp has some sweet dance moves in her. 


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Thanks again Ruth!  If you want to read more about Ruth, Davy and the rest of the family please visit her blog The Mom.  
As always, if you would like to participate in the special needs spotlight, or know someone who would please email me at thislittlemiggy at gmail dot com.  
Have a good weekend!

12 comments:

  1. Heidi7:33 PM

    I just have to say thanks for doing these posts. I think that they are pretty neat and that you are an awesome person for doing them. I don't know you personally, but I really admire you and how you are facing the things that life throws at you. So, thanks. Plus, your little girls are seriously cute.
    I have been reading Ruth's blog for some time and I think that she handles her situation with such grace. My BIL works with her husband and has just the nicest things to say about him and his family. That Davy girl is just a doll.
    Both of you are an inspiration to me as a mom. Thanks for being who you are.
    <3

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  2. Great spotlight! I love Ruth and her little Davygirl. Ruth's blog has always been a bright light for me and I have always loved reading about Davy's triumphs. She is one special little girl. Thanks for sharing.

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  3. Davy is a-dor-able. I just fell in love with her smile. Thank you for sharing her story with us. "Peace".

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  4. Linda P.9:53 PM

    Thank you, Ruth and Miggy, for telling us about this sweet little girl. I loved reading about your family, Ruth, and I love that picture of Davy and her big smile while she is in your arms.

    I like your sense of humor, too, Ruth! Having a sense of humor helps us moms of special needs kids to deal with the extra challenges. I speak from experience!

    Oh, and I think it is so neat that your hubby created Yo Gabba Gabba!

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  5. I'm so glad Ruth and Davy did a spotlight. I love Ruth's blog. Her family is beautiful inside and out.

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  6. I love Ruth's candor and her ability to laugh, give people the benefit of the doubt, but also recognize her shortcomings and forgive herself. Qualities I so want to have!

    All of these moms and kids you've spotlighted (spotlit?) are such an inspiration.

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  7. i loved this bit: "I think the smarter the Doctor the less social skills they have." I'm only a few months into this doctors and specialists life, but i've made the same remark.

    also, the special needs spotlight is genius. truly.

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  8. love ruth, loved this post. all these spotlights are so inspirational, they make me well up every time.

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  9. ruth is my aunt & she introduced me to your blog. i love it. i love the spotlights and your family's story.

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  10. HeidiAnn11:30 AM

    Ok, there should be a law against pig-tails that cute! DAR-LING!And, as always, LOVE the spotlight!

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  11. Love Ruth's Blog :)

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  12. I've had the honor of working with Davy the past 18 months on her language development. She is truly a fighter. I can still see the excitement in her face as she ran towards me on our last speech therapy visit. Ruth is very inspirational and she is the reason why I have started a blog. Thank you for sharing about the beautiful life of my little friend.

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