Tuesday, November 25, 2014

The Wind Beneath Her Wings


I have been writing this post in my head for probably close to a year.  I know what I am trying to say and I also know what I am trying not to say... lets hope I succeed.


Being back in here in Cincinnati, the place where Lamp was born, inevitably brings back memories from that period of our life.  The period that was pregnancy with a baby we knew would have special needs, but we had no idea how those needs would play out.  Like many parents in this situation one of the many things you initially grieve, is the sibling relationship you hoped your children would have, but now fear will be forever altered.  In those early days while I was still prego with Lamp we tried to gently ease PSP into a more realistic idea of what life with her new baby sister would be like.  Not that we exactly knew ourselves, but we knew there would be limitations that that of course their relationship would have limitations as well.  As you all know by now, we were the dum-dums who didn't realize that a missing hand here or there was no biggie.  To be fair, we didn't know if there would be a lot of other issues, but still...  From the get go there was a love and tenderness there that transcended earth, time and limbs.

I don't remember how old they were the first time I saw PSP carrying her little sister around--I'm thinking Lamp was around 18 months, so sometime in San Antonio-- but I can still see it clearly in my mind.   PSP 's arms under Lamp's armpits and torso, locking her hands together, and carrying her sister away.  At the time we thought they were both too little and that PSP might accidentally hurt Lamp so being the perennially overprotective mom I tried to put a stop to it.  What really sticks with me though is the mischievous little grins on both their faces and girlish giggles.  Like they knew they were bucking the system and testing new waters but not quite sure if they were going to get away with it.  After a few unsuccessful attempts to deter this new thing we realized that 1) PSP was strong enough and actually being careful and 2) that Lamp loved it.  And soon this became the norm for these two partners in crime.  Big sister, carrying her little sister from room to room, playing their various make believe games and dress up like it was business as usual.    

And while this became a natural and normal part of their play there is a a part of me that still feels this awe and wonder at PSP's ingenuity and frankly her willingness to make this typical.  There was no problem solving summit, or complaints from Miss P about not being able to play with her sister or her sister not being fun to play with because of her limitations... they just did it.  Playfully, gleefully and with the giggles of little girls who were living in their own world by their own rules.

Thankfully, this interaction is still a part of what normal looks like around here, and it's often just out of necessity.  In the morning as we're rushing for the bus PSP helps Lamp get dressed and carries one of her sisters to the stroller, while I carry the other, so we can make it to the bus stop on time.  And as we've adjusted to dads longer hours at work one day I asked PSP if she would help get Lamp in the bath and get her washed up.  She happily agreed.  I couldn't help but snap some pictures as my sweet oldest child bathed her younger sister from start to finish.  That is from running water, getting her in the tub, washing, playing, getting her out of the tub and jammied up.  She's 7 you guys.




I've often sat back and watched this routine at work--PSP carrying Lamp around a playground, story time, our home, the backyard and at some point the terribly cheesy but very appropriate Bette Middler song, The Wind Beneath My Wings, pops into my mind time, and occasionally I wipe away a stray tear.  I can't believe we were ever worried about this relationship.

And this is where I want to be careful.  See I wanted to write a post a while ago about not ignoring siblings of special needs kids, because man... it happens so much.  But instead I wrote a post about focusing inward.  Because I decided I could try and spread this message of not ignoring these amazing siblings, but in the end focusing my energy outward with awareness was not a great long term solution.  You'll have to read the post to get what I'm saying.  Then I just wanted to write a post about what an amazing kid PSP is... which feels like I'm trying to throw her a bone.  And I don't want to do that.  Homegirl needs no bones thrown her way.  So somehow today I'm trying to put it all into words.

Lamp naturally draws a lot of attention to herself.  Her limbs coupled with a sparkling personality and she is a people magnet.  When she zooms around in her power chair, that girl gets double and triple takes like Brangelina walking through a shopping mall.  People want to meet her, talk to her and yes they're often inspired by her.  And honestly, that's why many of you are here, reading this blog.  I get it.  She is the reason I started the special needs spotlight--so again, I get it.  What is occasionally difficult as a mom is watching people make a fuss over Lamp while often ignoring her equally as amazing sister standing just inches away.  Lamp is just Lamp, and she gets a lot of credit for being who she is.... for being born that way if you will.  Lamp's adaptations come from knowing no different, while PSP's adaptations are born out of a love for her sister and in many ways she's the one who has had to adapt even more.  

Ick.  I honestly don't like writing that as some sort of comparison of my kids.  There is something that just feels yucky about that, but at the same time I'm trying to help you understand something as well.

See one of the biggest B.S. things that people like to say to you when you find out you are going to have a kid with special needs is "special kids go to special families."  There are a lot of reasons that I'm not fond of that sentiment, but first and foremost it's just not true.  Do you know how many kids with special needs are abandoned or abused as a direct result of their special needs?  And while I think my family is pretty great, we're an ordinary bunch as well.  Even my daughters whose relationship I tend to idealize is one frought with many typical sibling frustrations and arguments.  My husband and I love each other, but we argue over typical spouse things as well OK?  We were not any more prepared for this journey than any other family out there.  Of course we try to be good parents, and we do things that I think good parents should do.  But for the most part, we are still us--a more aware and enlightened us, but still us.

But when it comes to making Lamp's world a little more Lamp friendly, her sister is the one who deserves a large amount of credit here.  Because lets face it, in kid world, kids have a lot more street creed than parents do.  When we used to go to story time in San Antonio and PSP would sit on the floor, holding Lamps hand, that is way more credible to other kids than if I--the mom--would have tried to encourage other kids to sit next to her.  As we moved here and started making new friends, the girls PSP's age didn't necessarily want to include Lamp--who is not only physically disabled and in a power chair, but much younger.  But as PSP included her in their play she is now just one of the gang... as an adult I just wouldn't have had that sway.  Even the fact that she argues and gets annoyed with her sister--just like any other sister--helps other kids see just how 'normal' this all is.





In the end, I don't know what Lamp or PSP will remember about their childhood years.  And I suppose in many ways it won't seem that remarkable.  There are no ponies or circus tents in the backyard.  We don't live in an exotic location or have access to a secret, endless chocolate supply.  And at some point they will realize, if they don't already know, that their loving and earnest parents were winging their way through each day and as fallible as any two humans could be.  And I honestly don't think our parenting is somehow off-the-charts amazing and tailor made for a limb different child.  Lamp is who she is.  I do hope they remember this unique and special bond they share, a bond that has been made possible largely by the love a big sister has for her little sister.  An internal willingness and desire to go the extra mile, something neither B or I can take credit for.  Lamp is an amazing little girl, it's true.  But on more than one occasion B and I have commented that if anyone has shaped Lamp's confidence and helped her feel comfortable in her own skin, it's her big sister, who has literally and figuratively been the wind beneath her wings.

 And today, I just wanted you to know that.  

Friday, November 21, 2014

A Post Script on Gratitude and Print Sale




So I when it comes to gratitude I talk a big game.  I instagramed this photoTuesday afternoon (the day I posted about gratitude for the sake of gratitude), a selfie of me laying on the couch, down and out with a bad back.  Over the next couple of days this "bad back" has gotten progressively worse, finally resulting in an ER visit (yesterday) at which point I was in excruciating pain.  Like only natural childbirth can compare kind of pain, and even then I was lamenting that at least you get breaks in between contractions.  Turns out I have a herniated disk.

If you're like me, you always knew that a herniated disk was a bad thing and quite painful.  But if you're also like me, you didn't really know what that actually meant.  Please allow me to break it down.  I can barely walk, it's more of a bent-knee, twisted pelvis hunched back slow moving shuffle, as I cling to walls, door handles and any other other tools of stability I can find.  I can't pick up my kids--although out of pure necessity I've had to a couple times when friends and babysitters weren't here--and that's kind of a big part of my job description.  And even when I'm laying down in bed as I should be, I still have unrelenting discomfort, including shooting pain through my hips and down both of my legs.  Thankfully the ER sent me home with a goody bag of muscle relaxants and pain relievers, which helps a lot.

This is less about having a Miggy pity party (although, sure that too) and more to inform you that when someone tells you they have a herniated disk, it is no joke.  I now have  a new level of compassion for something I just didn't understand before.

So back to the gratitude thing... Ha!  It's not like I don't agree with what I said, I do.  Buuuuuuut all I can think about is how good I had it a few days ago and I didn't even know it.  I am really being put to the test here, because that thing I talked about, What happens when your world gets worse, do you stop seeking gratitude?  Well kids, my world just got worse.  Which is always amazing to me, this idea that life is just going great and then one day bam... things change on a dime.  Life is so life-y that way.

But I have been searching for gratitude, for example: Friends who came to my aid (again) on Wednesday.  A babysitter/nanny we hire occasionally who while be available for a few days to help out, meals from our church congregation, DRUGS, and the fact that Thanksgiving has now been downgraded (upgraded?) to take out.  I was listing these things out loud to B as a means to calm our stress--you know like, Listen I know we don't need this right now, but look at least we can afford to pay someone to come over and at least we got this CAT scan right away so we know what we're dealing with... and then I said it... I said IT.  I know I just wrote a whole blog post on this...but really, IT COULD ALWAYS BE WORSE.

So there you have it.  I'm a walking contradiction... well a bended-knee, hunched-backed shuffling contradiction but still.  
Or I'm just human.


*****
On a happier note I finally got these paintings made into Giclee prints and I am so excited.  You may remember I asked you guys to vote on your favorite and these 2 were the overwhelming majority.  And I agree with you... they're two of my favorites.  So right now if you go to my shop I'm offering a special pre-sale price.  These prints look beautiful, they really do.  The paper is a gorgeous , thick 100% cotton watercolor paper and the inks are archival quality.  I am really pleased with how they turned out.  So the pre-order is a special price that will last through Thanksgiving and then I will get them out to you after that.  This is a limited edition print and when they're gone they're gone.  There are 15 available for pre order, but the total edition will be around 25 I think.   Colors are so hard to get !00% correct online, so please keep that in mind when ordering!




Thanks for all your love and support.  I heart art, and prints are a great way to go in making art more accessible and affordable to all.

Hugs,
M


Wednesday, November 19, 2014

Gratitude for the Sake of Gratitude




Last week when I shared my Gratitude Tree tutorial I wanted to talk more about the discussion on gratitude we had with our girls at dinner that night.  We talked about gratitude as a way of seeing the world and the difference between seeing the world with gratitude and seeing the world without gratitude.  For example if I walk into the kitchen and there are pots and pans everywhere, dishes left undone from dinner I could think to myself, What a mess...this place is a wreck.   No one ever does the dishes unless I ask them too...  And so on.  However if I were to try and have a heart full of gratitude, I might walk into that same room and think, Wow, look at all this delicious food we have to eat, how wonderful.  I'm so lucky to sit down to dinner with my family every night, what an amazing blessing.  And look!  Running water, in my very own house with which to clean my dishes!  Fantastic!  

We explained that gratitude doesn't actually change the situation, but it changes how you see the situation...which I believe can actually change your heart.  It was really great to have this little discussion and see their brains starting to grasp a new concept, like Oh I can choose to be grateful....hmmm.   

But I want to take this one step further and discuss an idea that always seems to surface when talking about gratitude.  Almost every time I hear gratitude discussed it seems there is always someone who says talks about being grateful for something because it could always be worse.  



Now we all know about the pitfalls of comparing ourselves to other people when it makes us feel worse.  She's prettier, she's skinnier, they have more money than we do, she's a better mother than me, their home is always so clean...  We know we shouldn't do that.  So why is it OK to compare yourself to someone else to make yourself feel better?  Perhaps you see someone on the street who looks like life has been rough to them and so you suddenly feel grateful that life hasn't been as rough to you.  Or (and I think this happens a lot and is a one reason inspiration p*rn is harmful) looking at someone with disabilities and thinking, Yep...it could always be worse.  I could be that guy.  

I would submit that this form of gratitude is not OK.  
Or at least, that it is not the ideal we should be shooting for.  

Full disclosure here, of course I am guilty of saying and thinking these things as well.  As much as I try to write from my heart and share things I feel strongly about, I hope you know that I know that I don't have it all figured out.  Sure we've all seen things, whether up close amongst family and friends or a world away on the news where we can say, I'm so grateful that's not part of my reality right now.  Because sometimes hard is just hard and no one wants more hard in their life... I get that.  



But the whole I am going to be grateful because it could always be worse is what I have a problem with.  First as mentioned it plays off a comparison and part of the problem is about this comparison game is that it's faulty.  We don't know the whole of someone else's story, so our comparison is based on limited information and just not accurate.  We know this when our comparisons make us feel bad, but the same holds true for comparisons that make us feel "blessed."  

But that's not even the point.  Gratitude for the sake of gratitude is the point.  

Because, even if our information is accurate someone else's truth has little bearing our own truth.  When we tell ourselves, things could always be worse, well what happens when things do get worse?  Are we no longer under obligation to seek gratitude?  Is gratitude only to be practiced when all our ducks are in a row?  For me I think of the the reasons I feel extra sensitive to this ideology, is that I hope no one ever looks at Lamp, or even reads the Special Needs Spotlight with a reassurance that they are more blessed because as they see these stories as evidence that life could always be worse.  Again, I get it... no one wants their child to have cancer, or difficult struggles, but like so many other families we are blessed.  

Perhaps my real issue is not making gratitude conditional, which is rather counterintuitive.  It is easy to be grateful for goodness, abundance, light, love and peace.  Yet I think the real test of a truly grateful heart is finding the good, thanking God, when life is not so free and easy.  Which really brings me back to the conversation we had with our girls.  Gratitude doesn't change the circumstances, just the way you see the circumstances, which then changes your heart.      

Instead of, It could always be worse may I suggest, There is always something to be grateful for.  

I think that needs to be stitched on a needlepoint.



I'd love to hear your thoughts on this as well... do you think I'm way off or does this mentality bother you too?  What do you teach your kids about gratitude?  Do you even think it's that big of deal?  Truth be told this may be one of those things I recognize the need for but am not great at implementing in my own life--oi.  But I'm going to try to because I really do believe that there is always something to be grateful for and that gratitude is one of the keys to a happy life.  

Monday, November 17, 2014

SpitfireMom




I am so honored and humbled to be featured over at SpitfireMom today.  I met Heidi Yarger, editor in chief and founder, at Alt last year and she is truly just a lovely person.   Honestly, I have that soothing, getting my hair brushed feeling from reading this write up.  They did such a great job and again I am honored.  Plus, having just wrapped my 100th spotlight, the timing couldn't be more perfect!  If you have a minute check it out here and tell me what you think!

Hugs,
Migs

Friday, November 14, 2014

100th Special Needs Spotlight! || Staci Mannella


     photo Allison Frantz

You guys, I am really excited, honored and thrilled to be presenting my 100th Special Needs Spotlight today. (Cue trumpets!) This is a pretty exciting moment for me and I just want to thank everyone who has supported this series over the years. Thank you for reading, commenting and sharing these stories. Thank you for emailing me and telling me how you were able to apply something you learned in a real life scenario or for simply telling me you enjoy the series and to keep up the good work. You're encouragement has meant the world. And a huge thank you to all my families who have participated in the spotlight by sharing your stories, your children, your families, your heart, your aches, and your triumphs over the years. It has felt like such a gift that you've allowed me into your collective worlds. So thank you. I thought it was appropriate that we have an extra awesome spotlight for the big 100 so please welcome Staci Mannella a member of the 2014 US Paralympic Alpine National Team! Enjoy!


Staci Mannella has astounding vision although she is visually impaired. The eighteen-year-old member of the U.S. Paralympics Alpine National Team has proven that her dreams are limitless no matter what her visual acuity. Staci was born with achromatopsia, a genetic eye condition that causes serious light sensitivity, poor visual acuity, and partial color blindness. She has been skiing for almost all of her life, and has been competing on the national and international disabled ski racing circuits for over six years. Her career thus far has included four national championship titles, a world cup gold medal, and the opportunity to represent the United States in the 2014 Sochi Paralympic Games. This rising star intends to drive forward in hopes of competing and medaling in the 2018 Peoyong Chang Paralympic Games.


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Miggy:  Hi Staci! So exciting to have you here today for my big 100th spotlight!  This is a very exciting moment for me, so thank you for participating and for sharing your story with us.  First please educate us about your condition.  I know you're blind (and in fact is that even the correct terminology?) but can you give us more detail--do you see any shapes, colors, tones at all?  Has your condition progressed over the years?  I know your parents had you diagnosed with Achromatopsia at 4 months old--what are some of the signs and symptoms for parents to look for?  Is there a range as far as how it affects people?  Any treatments?  


Staci:  Yes Achromatopsia is a genetic eye condition that has left me legally blind. It is stable (not degenerative) so I have had almost the same vision my entire life.  Achromatopsia has left me with poor visual acuity, partial colorblindness, and an extreme sensitivity to light.  My parents saw that I had nystagmus as a baby and that was their first hint that I had an eye problem.  I have incomplete achromatopsia.  People who are complete achromats are completely colorblind.  There are no treatments but I do wear dark brown contacts to help my eyes filter out the light.


Miggy:  Going back to your childhood tell us what it was like growing up with achromatposia?  At what age did you realize you were "different" and what impact did that have on you?  What about your family life?  How were you treated and what kind of support did you have at home?  I'm always interested in hearing adults with disabilities talk about what their parents did right and what perhaps they could have done better during their formative years.  


Staci:  I have been aware of my visual impairment for as long as I can remember. There were some minor instances when I was bullied as a kid, but I've always had pretty thick skin so it all kind of rolled off my back. My parents have always been really supportive. They did a great job in giving me the help that I needed, while pushing me to become independent and successful. They never pitied me or felt sorry for me and I think that's why I am so confident and comfortable with who I am. They always forced me to have  a"can do" attitude. I think that is why I have accomplished so much.
   
                                                                                   
Miggy:   OK so lets talk about the fact that you are a Paralympic athlete!  That's amazing!  You've got two 6th place finishes under your belt from the Sochi games.  Tell us a little about your journey to the Sochi Paralympic team?  What type of dedication and training was involved over the years?  Did you ever want to quit and if so how did you keep moving forward?  Any plans for the 2018 games?  :)


Staci:  I set a goal to make the Sochi team when I was twelve. There are not many twelve year olds that set a goal to make the Olympic team and actually do it.  Making the team is something I am really proud of because I worked really hard to get there.  I had to balance school and my athletic career, but somehow I managed it all.  There were definitely times when I wanted to stop skiing.  As a teenager, it was sometimes really hard to completely give up my social life and dedicate myself to a dream that seemed so far fetched.  But at the end of the day, ski racing is something I love and that fact overrides my hesitation.  Every athlete has days when they don't want to go out and train, but those are the days that count the most.  Those are the days when you have to dig deep and try harder, because that's when real improvement happens.  I am really lucky to be studying at Dartmouth where skiing can so easily be integrated into my academic plan.  My goal is to medal in Korea.


photo Getty Images

Miggy:  Do you have a moment, a lesson or a favorite memory from the games that stands out the most?   Any advice to young Paralympic hopefuls out there?


Staci:  Opening ceremonies was definitely a surreal moment for me. I think walking out with team USA and hearing the crowds roar was the exact moment it actually hit me how huge this actually was.  I was so honored just to be part of the games and to race against some of the most talented and accomplished athletes in the world. The experience as a whole was completely humbling and gave me such pride to be part of team USA.

I think the one thing I would tell athletes is to embrace every experience put in front of them.  I think all too often athletes get way too wrapped up in the competition that they forget the real meaning of sport, which is to have fun.  Some of my best friends in the world were also my biggest competition leading up to the games.  I have spent so much time with them, and have experienced so many once-in-a-lifetime experiences with them by my side.  I am so glad we never let race day competitiveness conflict with out friendship.  It's all about the experience and bettering yourself as an athlete.  The results will come if you work hard enough.

    photo Marcel Kuonen

Miggy:  Keeping in mind that you're a Paralytic athlete and that you're attending Dartmouth in the fall, it would seem that your disability holds you back very little.  But how does your disability affect your day-to-day life?


Staci:  How my disability hold me back is not something I generally think about.  I have been visually impaired my entire life so certain adaptations have just become a part of who I am.  As far as school, my biggest issue is reading.  I read everything on my computer where I can enlarge it, and I also use a speech software that converts longer readings into audio.  I will never drive, and I need someone to show me around in new places.  That's about it I think.  I am sure there are others I just can't really think of interesting ones haha!


Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  
Staci:  I love blind jokes! I don't even know where to begin with this. I guess one of my favorites is the blind high five, which is when two visually impaired people try to high five each other.  Blind humor is definitely a huge part of my life.


Miggy:  How can people best approach or respond to you or other blind people in general? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  


Staci:  I am not really the sensitive type so I don't know if I am the best representative for this question. Pretty much nothing offends me and I am also pretty willing to answer questions so as far as hurtful I don't think that really applies to me.  As a new guide dog user, I think its important for people to know not to pet my dog on harness or distract her.  I have places to go and things to do and that is dependent on her doing her job.  Other than that I don't think there is anything.

    photo Mark Leslie

Miggy:  If you could say something to the parents who just found out their child is blind, what advice would you give?


Staci:  I would probably tell them to treat them like any other child. The world is not going to baby them so neither should their parents.  It is true that being legally blind makes certain situations a little more difficult for me, but thats just something I have learned to dealt with and I encourage parents to instill this in their children as well.  If you work hard anything is possible, whether that be in school, or sports, or anything in life.

To read more about Staci check out her website www.stacimannella.com and her FB fan page here.  

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Staci thank you so much for taking time out of your demanding college life to participate in todays spotlight.  First, I'm so glad there is such a thing as blind humor!  I think this exists in a lot of special needs circles and I think it's great.  Also, I love your advice to parents of blind children not to baby them.  I can speak from experience that it can be tough, but I can also speak from experience that fostering that independent spirit can make all the difference between disabled and differently-abled.  And lastly, I love hearing about your hard word and dedication to get to make the Paralympic team.  And I agree, that is not something a lot of 12 year olds set their sites on and actually follow through!  So much respect for you Staci.  I can't wait to follow up with you in Korea--good luck and we'll be watching!  

Again you guys, thanks for the bottom of my heart.  And stay tuned... I have another exciting spotlight or two coming your way.  Wink.  As always if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com.  

Have a fantastic weekend!  


Wednesday, November 12, 2014

NYC Recap




New York.  It was fantastic, as New York tends to be.

Up front I'm going to tell you most of these pictures will bore you.  But there is a celebrity photograph included in this post... so there's your hook.  Stay tuned.

So the trip was great.  Sentimental yet fresh, tiring and energizing at the same time.

I got back from NYC on Sunday evening and felt so grateful for the weekend I had, and equally grateful to be home.  How lucky to feel so fortunate on both sides of the plane.  As I was riding in the cab back to the airport I was going into my blog-mind-mode, which is quite normal for me now, thinking about the pictures I would post about the trip or what I would say.  A weekend trip to the city and people expect fast paced fun and excitement, but this trip was mostly the opposite.  I stayed with a dear friend and her family in our old 'hood in Washington Heights and mostly stayed around our old stomping grounds.  I told B that I was taking the most boring photos ever, photos that no one would ever want to see of New York city, but photos that were meaningful to me.  For example, a partial selfie of me riding the subway.  When you've been away so long even riding the subway is exciting and full of memories.  


One of my very favorite places in NYC is Ft. Tryon.  It's a beautiful park on the northern tip of Manhattan that is so so beautiful, overlooks the Hudson but not nearly as touristy as Central Park.  





A funny story... Friday night I was headed out by myself and the A train was closed due to a fire on the tracks.  So I had to walk to another station to catch another train and decided to head down to our old subway stop by our old apartment.  On the way I ran into an old friend and we started talking.  Realizing he was going to be late to pick up his daughter I started walking with him to his daughters dance class where we ran into another old friend.  That was such a New York moment.  Like the Sesame Street song implies, you actually do know all the people in your neighborhood when you live in the city.

That evening I headed to Dominique Ansels Bakery not for the Cronut (those get sold out every morning) but for the DKA... which also ended up being sold out.  But I did manage to get a cookie shot and some other goodies.  The cookie shot was my fav.


Then I headed to Momofuku's Noodle bar and faced timed with my family for a few minutes.  This FaceTime thing is still incredible to me.  After dinner I grabbed a cab as I was trying to make it to the MOMA before closing time.  The cabbie drove as fast as he could but it wouldn't matter--the MOMA was closed for an event.  I started to walk away, then suddenly a big black SUV pulled up and I saw a tall statuesque, red headed figure exit the car and I knew who it was immediately.  And I thought, I just spent $20 on a cab getting to the MOMA only to see it was closed for your party so yeah, I'm gonna take a picture.  So I took a picture of the back of Nicole Kidman and Keith Urban and put it on Instagram.



And then someone alerted me to the fact that the Daily Mail had a picture of Nicole Kidman, Keith Urban and myself on their website.  You guys, this is my first official paparazzi photo.  And probably my last...but still.  I feel like a trip to New York is not complete without a celebrity run in...so check and check.



Dinner on Saturday evening with a few of my favorite New Yorkers, minus a couple.  


So yeah...that was the gist.  I spent a lot of time uptown in the Heights as they say, hanging with old friends, walking around and taking pictures of places that hold personal significance.  So much of the sentimentality I felt is directly correlated to my early days of motherhood and for that alone sometimes it feels like I was walking on sacred ground.  There is nothing like learning to take care of a brand new life--yours and your baby's--and since my sweat and tears fell on those city streets it's like my heart is permanently ground into that pavement as well.  I will always love that city.  

But lets talk about sentimentality for a minute.  It's a tough thing... it stirs your heart, brings back wonderful memories and fills you with love and gratitude for a time now past.  As I walked around with memories flooding in, there was a slight ache in my heart that longed to go back--not just to the city, but to that period of my life as well.  However, if you're not careful you can be so caught up in the wonder and beauty of the past it starts to create a false reality.  I said more than once that I even missed the smell of the subway and subway's, my friends, do not smell good.  Sure life back then was full of beauty and excitement, but it was also difficult and mundane.  Just like life is now and just like life will be tomorrow.  The last thing I want to do is be so caught up in the beauty of the past, sometimes even distorting and creating a false past, that I miss the beauty of the present.

And so when I landed back in Ohio and was welcomed with a beautiful sky, I took a picture.  Then I  drove home with a grateful heart, anxious to see my beautiful family waiting for me.


The End.


*for those of you who follow me on IG, you might remember that I actually had two celebrity encounters...well I'm going to save the other one for another post.  Wink.  

Friday, November 07, 2014

Special Nees Spotlight || Peter



Hi, I'm Brittanie. My husband (a third-year Podiatry student) and I live in Philadelphia, Pennsylvania with our three kiddos - one girl and two boys. We love exploring the City and the Mid-Atlantic/New England area. As a family, we love adventures, exploring the outdoors, traveling, water sports and activities, and playing board games. We have fun dancing, singing, and exercising, frequenting the shore and building things together. I used to own a floral design business, but have taken a temporary break since moving to Philadelphia.
Our oldest son, Peter, has been diagnosed with Food-Protein Induced Enterocolitis (FPIES), which is an allergy that effects the gastrointestinal system, and the immune system. It causes extreme vomiting and diarrhea until the body goes into shock, extreme lethargy, dehydration, pale skin, and sunken eyes. FPIES reactions happen about 2 hours after exposure, and almost always begin with delayed onset vomiting. Even the smallest crumb can send a child into life threatening shock and sepsis. Peter also has severe asthma, a myriad of other allergies, and allergic rhinitis. We are awaiting further possible diagnoses. We love our family and I’m happy to share some more information about us with the readers today.


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Miggy:  Hi Brittanie, thank you so much for being here today. So as you said your son Peter, has multiple diagnoses. Can you take me back to when you first you knew something wasn't right? When did you finally get a doctor or doctors to confirm this? Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Brittanie:  Peter was a good-natured, tenderly sweet baby, but from the beginning he would scream for hours, and projectile vomit after nearly every feeding. We originally thought he had acid reflux, and our pediatrician prescribed us some reflux medication, but that didn't help. His whole first year of life we spent consulting Neonatologists, Nurses, Doctors, Allergy and Asthma specialists. He was up screaming all night, every night. He was throwing up during the day. I was breastfeeding, so I cut all sorts of things out of my diet. We switched to different formulas. Sometimes he would improve a little, but nothing was really working. When he was about 8 months old, he started to lose weight. I felt defeated. I was exhausted. My husband was in his pre-med classes and needed some sleep too. We switched him to almond milk (endorsed by his allergist). Peter's coloring turned grayish. We didn’t know what else to do.
When he was 18 months old, we moved to Philadelphia for my husband's medical school and Peter saw a gastroenterologist. He was the most helpful, but still unable to give us a diagnosis even after multiple tests.
For the next year, I still woke up nightly with my screaming baby boy, writhing in pain. In April, 2013, my son was hospitalized for what we thought was a severe stomach flu. He was so dehydrated they gave him 5 bags of fluids in less than 24 hours. He had metabolic acidosis. He was there for 2 days, with just popsicles, juices and graham crackers, and an IV. When we were discharged, the nurses told us to avoid dairy for two days, just until his stomach recovered. When we re-introduced it on the third day, he was screaming again. I never went back to it again.
We thought we had fixed the problem, since he wasn’t screaming at night. But, he would still complain of an upset stomach. And, he still was having irregular bowel movements. We had cut dairy in it’s raw form out of his diet (cheese, yogurt, milk), but not its baked form (cheese crackers, cookies, bread), and we hadn’t even thought about soy.
That hospital stay was just the beginning of our time in the hospital that year. In the next 12 months, we had overnight stays at least once, sometimes twice per month. But this time, it was for asthma, and what we thought was Croup. After eleventh stay, and twelfth time being prescribed oral steroids in a year, I met with a new doctor at our group practice. She told me my son’s medical history was alarming, and I really needed to see a specialist. She referred me to her personal allergy and asthma specialist.
That was in June of this year (2014). My son was nearly 3 ½. We met with the specialist in July. Our new doctor diagnosed my son’s milk/soy protein allergies, as well as his asthma diagnosis, and all of his other issues within minutes. They did skin allergy tests as well. I felt free, enlightened, alive; for the first time in 3 years I felt a HUGE weight lifted off my shoulders. FINALLY, some answers.
I later discovered this specific doctor specializes in my son’s condition. He's published papers, established new treatment applications, and done tons of research. He was truly a literal, specific, answer to our many prayers. We walked away with new medicine, a HUGE packet of information, and letters to hospitals, doctors, school personnel. He detailed our new treatment plan. And, even though my work load had just quadrupled (I also had a 5 month-old baby to juggle), I felt light as air. Finally someone knew what was going on, and was helping my child.
We also learned that our stomach-flu hospital stay was actually a potentially-fatal allergic shock reaction that my son’s body had from being sensitized to so many allergens for so long. We were lucky we had such a positive outcome from it, because that it not always the case.
It’s only been 3 months since our initial diagnosis, and we’ve been in the hospital once, and changed medicines/doses, but we’re already SO much better than we were before. I also discovered, through this same doctor, that I, too, have FPIES, as does my daughter.



Miggy:  Explain how Peter’s needs affect your day-to-day life.  

Brittanie:  We have a strict medicine regimen, morning and night, and sometimes around the clock for my son's asthma. All his food is either home-made, or completely milk and soy-free. He has to eat about every 2-3 hours or he ends up very hypoglycemic. We can't go out to eat, and we try to emphasize the good things we can eat. My son calls his "safe foods" Peter-food (like Peter-milk). It helps him own and enjoy the foods he can eat.

We have to limit his exposure to allergens. Our wood floors throughout the house are supposed to be swept and mopped at least once daily. All surfaces are supposed to be dust-free. Sheets are to be washed twice per week. We have a special air purifier in our house. We cannot have pets, and the fact that we share a wall with a smoking-neighbor is very difficult. If he has been around any offending allergens (pets, for example), I have to wash him/shower him immediately to lessen the severity of his reaction.
We also have to take extra precaution around other small children. I cannot take him to daycares or places where he is exposed to excessive germs, because even the smallest cold will send him into the hospital. We wash hand frequently, and rarely go places where there are lots of other children.
Oral steroids inhibit growth, so we do whatever we can to limit his dosages to facilitate normal growth. He also takes a multivitamin and fluoride because the breathing treatments dry out his teeth and weaken them.
 
                                                      
Miggy:  What are the biggest worries you face for Peter?   
Brittanie:  Exposure to allergens, particularly food allergens, is my biggest concern. Because FPIES is Non- IgE mediated, meaning there is no swelling, rash, etc. typically associated with allergies, he could potentially be exposed by eating something at school or elsewhere and I wouldn’t know until hours later when he exhibits symptoms. If the exposure is large enough, he could have a shock reaction again, and those are potentially fatal.


Miggy: Like all parents we still have hopes and dreams for our special kiddos, what are some of the hopes and dreams you have for your son?

Brittanie: I just hope that he gets to a position in his health where he can run and play without fear of an asthma attack. I hope we can find the right diet for him so he can grow and gain weight healthily. And, I hope that he will not have any lasting effects/delayed medical issues from all the medicines he takes daily. I know he will likely struggle most or all of his life. I just want him to be able to experience as much as possible.



Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
 
Brittanie:  We talk a lot about bowel movements. My son even has a song for when he has to go to the bathroom. And, he proudly announces when he has gone poo - which is good, because I need to know, and I need to check it! But, to other people, especially in public, it seems rather odd, or endearing at best.


Miggy:  I know that food allergies in particular can be misunderstood at best and underrated at worst. How can people best approach or respond to your family and your sons needs? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Brittanie:  People often say, "Oh, well, at least you don't need an Epi-pen." Or, "At least it's only a gastrointestinal problem, that you can fix with his diet." But, the opposite is actually true. An IgE-mediated food allergy (something that causes anaphylaxis) is somewhat forgiving. If a child can tolerate the amount of dairy in, say, cheese crackers, without an anaphylactic reaction, the child can still outgrow the milk allergy in many cases. For many children with this condition, regular ingestion of small amounts of a trigger food may help to outgrow the clinical reactivity.

FPIES is very UN-forgiving. The same amount of milk protein in one cheese cracker a month is enough to keep a child sensitized and reactive for the rest of his/her life. That small amount of milk protein will keep the clinical sensitivity alive and make a severe reaction (like shock) more likely upon a exposure to a larger amount of allergen.



Miggy:  If you could say something to the mom who just starting on this journey of special needs, what would you say?
 
Brittanie:  To anyone who is beginning this journey, I say listen to your "mommy-sense". Only you are with your child every day. Only you know how they are acting. And, don't fell bad about being frustrated. Just do all you can do to help your child. I'm also a big believer in prayer. I think God takes interest in our lives and can come to our aid when we are seeking help. I would also say research, research, research. Talk to people. The more information you have, the better equipped you are to explain things and remedy them. And, keep a journal - this helps document medical episodes.

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

Brittanie:  Not every doctor is going to have the right answers. Not every doctor CAN be an expert in your case. Sometimes you have to go through MANY doctors, and some heartache, in order to find the "right" one. Also, I think empathy is the best policy. Having a child with special needs, especially needs that aren't always visible to others, has opened my eyes of empathy - to know that many people have struggles you cannot see, or they may not let you see. Most everyone is just trying their best to get by, so it suits us to give each person a little more love.


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Brittanie, thank you so much for sharing your journey and your sweet Peter with us today.  What a roller coaster!  I think most of us just ache thinking about what that first year of Peter's life must have been like--for you and for him.  And It seems unreal that it has taken you 3+ years to get some answers, but unfortunately I think this can often be the case.  It can be so, so difficult trying to find answers and coming up short time and time again.  But I have to say, I appreciate the shout out you give to Dr's in your final answer.  We really have to remember that there is no way every Dr. can know about every condition in the world--there are literally thousands upon thousands of rare conditions!--and I think most of them are doing the best they can, just like the rest of us.  I appreciate you sharing this part of your journey because I know there is another family out there experiencing something similar--knowing something is wrong, but not knowing what or where to find the answers.  Hopefully your spotlight can be a support and ray of hope to someone out there.   Thanks again Brittanie--so many words of wisdom above.  Hugs to you and your sweet family!  

You guys, I just want to say thank you for all the love and support you send my way each week, and especially for the Special Needs Spotlight.  It's only been going this long because of you--so thank you.  As always if you or someone you know would like to participate email me at thislittlemiggy at gmail dot com.  

Have a radical weekend.