Friday, June 15, 2012

The Original Special Needs Spotlight





Hey ya'll.  So I thought I'd do something a little different the next couple weeks.  I'm sure a lot of you know my friend Reagan.  She's got a couple popular blogs.  Well one's a blob and one's a blog.  If you don't know Reagan she's as witty and funny as she is beautiful.  In short, a gem.  Reagan also has an adorable little girl named Piper who lives in a hospital in New York.  Yes, Piper is 5 years old and has lived in a hospital her whole life.  As a little back story Reagan and I first met in Provo and then randomly (read: divinely) meet up again a few years later in New York City.  We were pregnant at the same time--Reagan with Piper and me with PSP.  We visited Piper in the hospital several times in those early days and I grew to love that little monkey.  When I was prego with Lamp and found out about her condition, Reagan was one of the first people I thought of.  While I was grateful to know someone who I could relate to, I also found myself looking at Reagan with new eyes filled with respect and awe for all she had already been through.  A while ago I asked Reagan if she'd do a little interview project with me on the now defunct blog called Bloom.  I interviewed Reagan about her and Piper, than she interviewed me about Lamp--so this interview is over a year old.  It was really from doing this first interview with Reagan that the Special Needs Spotlight series was born.  So I thought it would be fun to republish this interview in it's entirety for the next 2 weeks.  

I also thought this would be a good time to invite you, my readers, to ask me any questions you have regarding Lamp and our family and perhaps I'd do a special Special Needs Spotlight about us with you guys as the interviewees.  You can post the questions in the comments section or email them to me at thislittlemiggy at gmail dot com.  Are you excited?  I am! 

 First up will be my interview of Reagan.      


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Miggy:  Hi Reagan.  So I've known you for a while, including the time you were pregnant with Piper and when you gave birth.  Looking back on those days it was all so tenuous, scary and unknown...if you could go back and tell yourself something or give yourself some advice what would you say?  

Reagan:  I would tell my little self that the pregnancy will be sucky, the delivery will be scary and the first year will be the hardest year of my life. But then it's going to get better. Way, way better. 


Miggy:  What is the best part about being Pipers mom?  What is the hardest part?  

Reagan:  The best part aside from all the obvious awesome stuff (she's cute! she's spunky! she's sneaky!) is that she is so unique. People always tell me they are jealous of me that Piper Jane is mine and not theirs. I actually believe them a lot of times. She is different in so many ways, and people are really drawn in by her sass. I feel genuinely fortunate to be her mom. Don't be jeal! 

The hardest part is a two-way tie between not having her home and seeing her suffer when she gets really sick. 



Miggy:  I know we have different situations, but we both have little girls with really rare issues (or diseases...I'm still not sure of the correct terminology here) so since I'm still a bit of a newcomer to the world of special needs, is there any sort of advice you'd pass down to other moms like me who are in a different but still sorta the same boat?  

Reagan:  I've written about this on my blog before, and I still think that the easiest way to have a happy family is to be grateful for as many things as you can and try to warp anything possible into a miracle. Maybe all you can think of to be grateful for on a hard day, is that your child is alive. But maybe on another day your child will smile or sleep in your arms or sit up for the first time or poop really good or reach for you or pull your necklace off. That is when I think you should say "Piper! Look how strong you are you little body builder you! You just broke my favorite necklace with those big strong guns you call arms!". And then you choose a different necklace to be your new favorite, and call it a day.


Miggy:  What are your biggest hopes for Piper and her life?  

Reagan:  I hope she can accept herself, her disabilities and be happy despite all the challenges they add to her life. I hope she will understand one day how much she is loved, and I hope she never stops being so sneaky. Because it's funny.


Miggy:  What are your biggest fears regarding Piper?    

Reagan:  I worry that her life will be uncomfortable, lonely and frustrating. If you're like me, you know that it broke my heart just to type that. It probably hurts to read it too. 


Miggy:  I don't know about you, but I never really saw myself as the mom of a special needs child, what has been the biggest surprise about being Piper's mom? 

Reagan:  They have actually been pleasant surprises, Hooray! For one, it's hard, but it isn't all hard. I have had such happy moments with Pip. And if I had to describe the last three and a half years in one word, I'd say give me more words. After that I'd say first joyous, then wonderful, then crazy and then finally-hard.   

Second, I hope this doesn't come off wrong, but I was surprised to find out that I'm kind of good at it. I have never felt like I excel at anything, and not that I excel at this..but it is the hardest thing I've ever done, by a lot. I'm not the type of person who is too prideful to quit something hard or sucky, but I will never quit on Pip, my friends. Never.

(of course finding out about her condition was a huge shock, but that's probably kind of obvious.)


Miggy:  Since you have such an a-typical situation with Piper living in a hospital, do you ever dream about doing 'normal' things with Piper that maybe the rest of us stay at home moms might take for granted?  If so, what are they?  

Reagan:  Is this the kind of blog that I can swear on? Like mine? Because if it were I would say "Yes, oh {explicit} yes.". But if it's not, I'll just say a polite "YES!". I have a huge list of things I would do with Pippy. Some of them are big, like take her to the beach or show her around the south where I grew up. And some are small, like take her home and put her down for a nap in the crib she hasn't ever used in the nursery she's never been in. I actually wish I could be woken up by her in the night. I wouldn't mind cleaning up a cluttered living room of Pip's toys, or folding her tiny laundry with mine.  I hate housework, but that would all feel very normal and sweet, and a teeny bit exhausting in a good way. 
  

Miggy:  I have to say, you've always had an upbeat and happy personality and even from the very beginning with Piper--getting word of her condition, the emergency c-section, the early days and weeks--you hardly ever complained.  Is this something that comes naturally or was it a conscious decision and something you've had to work on?

Reagan:  Both, for sure. Naturally I'm pretty spunky and upbeat, which I am so grateful for, but it hasn't trumped all the hardship and bad feelings. I have melt downs every once in a while and I start to lose motivation with the monotony of our routine. I often get pep-talks from friends and also from my brain to stay strong and be thankful. Pep-talks for President! 

On the contrary, I've discovered the occasional meltdown can actually make me feel better sometimes.


Miggy:  One of the things I worry most about for Lamp is how other people will treat her with such obvious differences.  Has anyone ever been outright rude, or even just less tactful regarding Piper?  What about other children who don't necessarily "know better" but can still be hurtful, how do you handle those situations? 

Reagan:  Yes, unfortunately it's happened. Most of my clients think Piper Jane is with a babysitter, but one time when I was out of the salon for a Piper related emergency, my boss accidentally told a client that my daughter was very sick in the PICU and he didn't know when I'd be back to work (he felt awful btw). Long story short, she had tons of questions when I came back to work and after finding out more about Piper she asked "Oh Reagan, why on Earth didn't you terminate?"  Call me sensitive, but I think that's a little rude.   

It's hard to say how I handle these situations, because I don't think I do a very good job of it. I never say anything to the person. I hold it in, get my feelings hurt and later cry.   Eventually, I cheer up. Thankfully it doesn’t happen all that often, because it doesn't ever get easier. I'm guessing that's partly from my instinct to defend my little girl, which I never have the guts to do verbally. I really try to just give the benefit of the doubt to the offender, and hope they never meant to make me feel bad. 


Miggy:  Another thing that struck me after finding out that our daughter was going to be a 'special needs' child was how alone we suddenly were.  Of course people were reaching out and super kind, but I didn't know anyone with a child who had such a rare situation (except you!  thank heavens) and it was just a strange realization to suddenly find ourselves in this boat.  I remember flipping through a pregnancy magazine thinking "Ok, where's the article for parents with special needs children? or Where's the article on when you don't get good news at the ultra sound?"  So I don't know exactly what my question is, but can you relate to those feelings?  Have they gone away to some degree, or will you always feel different as far as mothering goes?

Reagan:  I have had all of those feelings you mentioned. I felt frustrated when so many people tried to convince me the Doctors were wrong and my pregnancy was completely healthy after all. I wanted to shut everyone out and never leave the apartment. All I wanted was for someone to relate to me, since I was still pretty young to be having a baby and so many of my friends were still single and carefree. I really did feel alone at so many times. And pregnancy books/birthing classes no longer seemed at all relevant to me.

The loneliness hasn't completely gone away for me, and although it is still really sad for me sometimes, I've adjusted the best I can. There is never a moment that I don't wish for pip to be with me. 
  


Miggy:  Another thing I often said before I had Lamp was that I would never choose this for my child.  I didn't want her to have these limb issues.  Now that she's here, I feel conflicted.  I don't know that I would change her if I could...I love her just the way she is.  At the same time, of course I still don't want her to have the additional challenges that will come from having abnormal limbs.  So what about you...do you wish Piper was a "normal" girl?  Or are you entirely content with her just the way she is? 

Reagan:  Both, and like you, I kind of think I'm crazy for not just screaming "NORMAL! NORMAL!". Piper Jane is a sass-pot, she's spunk city in miniature form and I wonder if so much of her personality is because of her need to fight. I'm sure you can agree this question is hard to answer, because it's hard to imagine Piper Jane still being Piper Jane any other way. I definitely mourn over things like running and climbing trees and gymnastics and adventuring that she won't be able to do normally, or maybe even at all. And there are things so far in the distance that I don't even let myself think about. Adulthood? Her never having a family of her own? Never living outside of a hospital? No traveling? I try to not waste time worrying about those things, but occasionally my mind goes for it anyway, and I always end up feeling sad and frustrated. 

I love Piper Jane dearly the way she is, and I vow here in this interview to love her forever for her unique, spunk-city-self, but I think truthfully, if some doctor or magician or Harry Potter wand came to my front door and said they could take away all her pain, how would I ever turn that down? I wouldn't. 

BUT, since Harry potter doesn't even live in New York, I think the chances of that happening are pretty low. So, for now I live by this Dr. Seuss quote, which was pretty much made for my pip..

"Today you are you, that is truer than true. There is no one alive who is youer than you!" 

And because of her especially unique self, I am more and more thankful every day for the unbelievable gift that my wee Pippy is. Hooray.



9 comments:

  1. Anonymous10:20 AM

    What an incredible attitude from an inspiring mom. Thank you for sharing this story. I hope you all know what a blessing it is to read about such a great love.

    Wishing blessings to both of your dear children.

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  2. I have read about Piper several times before. I have tried to follow her blog bt haven't been able. I will try again.
    Piper is just an adorable child. Her parents are just so sweet. I would think the hardest part wold be not having her at home with them. Thanks for sharing this story. I admire all parents of "special" kids. I adopted one.....besides many other difficulties he has it's the behavior isses that were the hardest.

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  3. I love these guys!

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  4. You gals are two of the coolest mom's I know, of course you're friends! Loved reading your interview. After following both blogs it's fun to see the interaction. :)

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  5. Fun, this was a great interview the first time and it's nice to re-read. Also, I love Regean in that creepy blog reader sort of way and admire her so much for the mama and person that is and shares onI her blob.

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  6. Hooray indeed, simply inspiring. Amazing Miss Piper must get her sass and spirit from her amazing Mom.

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  7. so glad you shared this! I had never heard of Reagan or her cutie-pie daughter. (but in poking around I gather she's kind of a big deal in the blogosphere?)

    I think this interview proves, to me, that one can simply never know what's going on in anyone else's life, just from looking at them.

    I think I've told you before, but I really do want you to know how very much I appreciate your special needs spotlights. I look forward to every Friday!

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  8. April said it all so nicely. I enjoy 'meeting' each of the families you share every Friday and am looking forward to the remainder of this interview.

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  9. you know that scene in the grinch that stole christmas where his heart grows two sizes? that just happened to me reading this interview. reagan, you make me want to be a better person. love you!

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