Monday, November 22, 2010

The first part in a new Reagan and Piper Jane

A few months ago I learned that my friend, Miggy, was expecting a child with special needs. In correspondence with me she expressed a sense of loneliness in facing this new situation. (Where were the other mothers who had dealt with this? Where were the articles in parenting magazines?) We decided that Bloom could be the perfect place to talk about this. Perhaps there are members of our little corner of the web who can provide her with insight and experience. I also felt it would be helpful for us all to hear from mothers like her so that we might better understand how to to interact with children with special needs, their parents, and how to teach our children to do the same.

So today's post is the first installment of a new Bloom series about special needs children. It is an interview by Miggy of her friend, Reagan, whose adorable daughter, Piper, has a special condition of her own--one that requires her to live at the hospital.

Friends. You are going to fall in love with these women and their babes. Trust me. We are so grateful that they are here and so willing to open their hearts to us.


Take it away, Miggy...

When you first meet Reagan you'll probably think to yourself, like I did, Well she's skinnier, prettier, funnier, and a better dresser than me. But at least I can dance. Then she shows you up on the dance floor and she's got you there too. Fortunately she's also got kindness and sincerity in spades and you feel immediately at ease in her presence. Reagan hails from Tennessee, but currently resides in New York City where she works as a hairdresser to the famous and not-so-famous alike. Reagan and her husband Jake can frequently be found either training for or running a race. Most importantly though, Reagan is the mother to the ever sassy, pint-sized ball of cuteness Piper Jane who has cerebro costo mandibular syndrome. Reagan's an inspiration to those of us who know her, and I'm grateful to call her a friend. You can read more about Reagan, Jake and Piper at Reagan's Blob.


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 tedious, 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 Piper's 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 and Jake's. I hate housework, but that would all feel very normal and sweet, and a teeny bit exhausting in a good way. Jake and I often torture ourselves that way, usually when we're having a great time. One of us will say "wish Pippy was here for our bike ride". Then we hug or cry or smile.

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 Jake 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 to Jake. He does his best to convince me that no one meant to make me feel bad, and eventually I cheer up. Thankfully it doens'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 care-free. 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/us. I once wrote on my blog about when Jake ran a father's day race in central park. There were a lot of moms and kids holding up signs for their dads, and I definitely felt left out. No one there knew I was a mom. It's hard to feel like a real mom with such empty arms. Situations like those will always have me feeling a little "different".


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 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.

See? Told ya you would fall in love.
Tomorrow Reagan interviews Miggy...
We can't wait!


Kari said...

I love Reagan's blogs! Or blobs. Or is one a blog and the other a blob?

I think I remember her saying she doesn't like being called a hairdresser, btw. :)

bjahlstrom said...

I'm pretty sure that Pip gets her spunkiness from her mother! Reagan is a dear, wonderful, amazing woman. What an honor it would be to have her as a friend. Thank you so much for sharing.

Abbie said...

"wish pippy was here." oh reagan, you made me cry.

this was so great, ladies. thank you for doing it - very insightful and helpful for all to know. you are both amazing. definitely two women i really look up to. my heart is all love factory for both of you and for your sweet babes. thank you both for rocking my socks in real life and through your blogs.

Kage said...

Hooray for 2 of my fave bloggers and real life friendsies. Thank you for being so open and enthusiastic, dignifed and graceful. This makes Pip and Lamp's unique gifts spread and shared with all of us too. You are all so lucky to have each other, and I mean that in every possible combination.

Rachael said...

Thank you for this. I'm heading into the hospital right now with pregnancy complications, and I needed to read this to be reminded of the positives, rather than dwelling on the what-might-be.

The Parkers said...

What a touching and insightful post! All of you women are so amazing and strong and I'm inspired by everything you had to say.

My older sister has Rett Syndrome, which has left her severely handicapped, unable to walk or talk, and functioning at a 1 year old level, so this topic is very near and dear to my heart. Growing up with a developmentally disabled sister had it's challenges, but you learn as a child to accept people unconditionally and to not judge those who look or act different than you. You become comfortable around others who have special needs and you are able to talk and relate to these people much more naturally than others who have never had this exposure. I am grateful for this experience in my life and I marvel at my parents who had to work so hard to take care of my sister plus us younger siblings for so many years. I never once heard my parents complain about our situation and they always stayed so strong through it all.

I will admit that I have always been a little sad that I never really had a sister in the traditional sense....someone I could talk to and share things with, or watch us raise our families together. I have mourned a little, from time to time, that sister I never had. But I do look forward to the day in the life here after that her body will be made whole and I will finally get to 'meet' the real Debbie, my sister. And we will have a lot of catching up to do.

Thank you for focusing on such an overlooked topic. What a wonderful community Bloom is!

Megan said...

Yes, a very over looked topic. and while those with special needs children will sometimes turn to others with special needs children to find a place of common ground, there are oftensituations that are different enough to make you wish there really was a manual somewhere. While I don't know these women's situation, I do understand some of what they are saying. And while my son does not have a syndrome that puts his life at risk, life is still a challenge in certain ways, blessings in others. But isn't that the way it is with all children? I will stop my comment here despite the fact that i could ramble on forever, but it is a good topic for discussion. :)

Shauna said...

That was just lovely! Thank you for sharing! I miscarried a baby with special needs and I often wonder if I would have been a good mother to that child. Reagan is an inspiration to me and so is Pip!

Cam LaBelle said...

Team Pip all the way, babay :)

I've worked with special needs/medically fragile children, and I've also been on the other side myself...with a baby girl who's needs were too great for her little body to, I know that Bloom offering this place of support & chance to show some light & love to this two rock*star mommmies is so cool. So very cool. Thanks, Bloom :)

Bugg's mama said...

I feel so utterly blessed to get to know you both & your special children. Thank you so much for sharing! Great interview. And I agree....I wouldn't change my boy. He wouldn't be Wyatt if he was any other way than he is now. It took me a couple of years to get here but now, really truthfully and honestly, I am so stinkin' happy with this life! Celebrate! Wahoooo! Love, Bree

mushbelly said...

Reagan - that was beautiful! Great interview. I will never tire of hearing about your Pip.


Fiona said...

This is beautiful and heartbreaking at the same time. Pip is so gorgeous.

Grandma Honey said...

I've been following Reagan's blog for just a few weeks now, and I learn so much from her. What an inspiration she must be to so many many people. She certainly is to me!

jen said...

what an absolutely wonderful post, such an uplifting interview. thank you both for sharing your experiences and raw feelings, you are both inspirational, and I will be enjoying those messes and holding my little one a little more often tomorrow.


Rae. said...

Yay for Reagan and Piper! I've been following them for a bit now, and was so excited to see them in the Bloom community!

This interview made me cry...and then cry some more. Thank you for your honesty, and for reminding us all that happiness can truly be found in any situation. Piper is a doll. Love her.


Karissa Jade Ferguson said...

I am so thankful that you are doing this series. My husbands younger brother, Cole, was born with Cerebral Palsy. Praise God he is turning 21 this saturday! As a baby they were told he wouldn't live past ten. Thanks for sharing your story Reagan. Blessings on your family!

Anonymous said...

Thank you for sharing. I delivered my third child three months ago. He was still born. When you said it’s so hard to not have Piper at home or to be in public places without her, and have people assume you’re not a mother it hit me so hard. I know that struggle of whether or not to mention that “missing” child…you want people to know how proud you are of them but don’t want people to dwell on the details of his death, or in your case her disability. For the most part I know if I mention my Cameron people will want to talk about how he died and not that he was mine for 9 months. Congratulations on celebrating Piper’s life and treasuring both the happy and hard times. Undoubtedly there are hard times ahead, but your abundantly positive perspective will allow you to continue to find the joy. From what you have shared she seems to be a wonderful girl, and you a wonderful mother.

Maggie said...

I'm so grateful Reagan and Miggy have the courage and eloquence to help others by sharing their stories.

I don't have a special needs child, but I did have a disabled mom who lived in a hospital. Reagan's and Miggy's experiences are vastly different from mine, yet so much of what they describe -- loneliness, longing, gratitude and not wanting to change a thing -- deeply resonate with me. Reagan has given me so much strength and positivity, and now Miggy, too.

*Thank you.*

Note: Please don't hate on me for using the word, "disabled." It's how my mom described herself, so it's the word I use.

thorney said...

I love Reagan's blob and heaing about all things Piper Jane (and Jake too).

Great interview.


em g said...

Reagan, I love your writing. Aside from the great "Pip-alogues" you have a wonderful way of making the most profound observations in a simple. direct, and often zany and enthusiastic, way.
I find something that sticks with me every time I visit your blog.

Typical White Person said...

Thank you for talking about feeling lonely and isolated. I have a 23 year old son born with cerebral palsy and I never realized those were the words for I have felt on and off since he was born. Those are real feelings that always exist at some level.

Nina said...

Thank you for featuring both of these interviews. I too am a parent of a special-needs(i prefer to call it extraordinary)child with a soomewhat rare condition (it's called VACTERL Association).
It's great to have others share their stories and to know you are not alone.
People assume that life ends when you have to deal with children who look "different", require countless surgeries, meds and around the clock care....but the truth is we stiil have a sense of humor, want to look good and want to pursue our own passions.
These ladies are perfect example of that:)