Monday, October 20, 2014

Fall-tastic Weekend



This weekend was a perfect mix of working hard and playing hard.  We tackled more house projects.  The unglamorous yet important kind as we can finally park a car in the garage--hooray!  But even in the hum-drum of tending to the house, with fall in full swing all around us it was like there was an extra character in our midst, you know like the distant relative you don't see very often but who always brings exotic treats when he comes to visit and so the excitement level is always elevated that much more?  Yeah, fall was our fun Uncle this weekend bringing a little excitement and elevating ordinary tasks with it's beautiful backdrop of leaves, sunshine and barely crisp air.  


B decided to go running on Friday and somehow it became a family run.  Lamp and Zuzu shared the double stroller, which technically isn't a jogging stroller, but somehow we managed, while PSP biked along.  B pushed the stroller most of the way, but I would take over to give him a break and sometimes we'd push together with one hand.  That's marriage in a snapshot folks.  


This also became the weekend where I overgrammed pictures of leafs.  (or is it leaves?)  I'm kind of obsessed.  Especially with these tiny yet perfect maple leaves.  What is it about seeing nature so tiny and still so perfect?  I think it a reminder of the whole Horton Hears a Who thing, you know, A person's a person no matter how small.  It's a little reminder that we all matter and we all contribute to the beauty of the whole.


Saturday we hiked, which was good for my soul and good for my Cincinnati love.  I decided that Cincinnati and I, we're an arranged marriage.  We didn't pick each other, but we're going to fall in love hard and have a beautiful life together.  I know there will be plenty of ups and downs ahead but I'm starting to come around.  Pretty right?         

And how cute is this little baby hiker?  She just kept resting her head on my back or leaning to the side to see what silly shenanigans her sisters were up to.


Family selfie.
And that's a wrap.
Hope you had a great weekend as well.

Thursday, October 16, 2014

Girls Are So Hard!



I love having 3 girls.  Individually, collectively I love it.  The dynamic, their personalities, the fancy stuff, the girly-girlness of it all.  I feel like I won the lottery.

Of course, OF COURSE, it should go without saying that had my lasses been lads, I would have loved them just as much.  Boys are awesome too.  In general, I'm a fan of humans.

But here's the rub... I can't count the number of times people have said, Oh boy... just wait until they're teenagers.  You're in trouble!  or Yikes, girls... that's a lot of drama.  or Girls are just hard!  Or something of the like.

And lets take a step back to get a broader look.  Mean girls--it's a cultural thing.  And trust me, I know it's real.  There are definitely mean girls.  I had my fair share of drama with the queen bee's of middle school and I was not completely innocent of mean girl behavior myself from time to time.  And I know this goes far beyond middle school.  Mean girls are a real thing at every age.  But often we talk about "mean girls" and it seems that we are creating the issue just by talking about it.  Again I'm not saying mean girls don't exist--they do. At every age.  Check and check.  But have you ever been together with a group of women and heard something like, Well you know how women are to each other!  We're just so mean to each other.  Women love to tear other women down.  I have totally been in that conversation.  Yet when I step back I think... Actually my friends are pretty freaking awesome and treat me well.  My women friends lift me up, help me when I need help and cheer me on when I need cheering on.  Yes there are mean girls, but on the whole my experience with other women in my life is and has been positive.  Like way disproportionately in favor of positive female relationships.  So I feel like talking about it the way we do--like this is just how we are so get used to it--sabotages ourselves and reinforces a phenomenon as 'normal' that I see more as an outlier.

So back to my girls... I don't like being told how awful it's going to be, how much drama my girls are going to cause simply because they're GIRLS.  I grew up with quite a few brothers and let me tell you, boys can be drama too.  Boys can be mean to each other, boys can hold grudges and boys most certainly can bully.

Often the way we verbally frame things can shape the outcome.  For example, if my husband and I say things like, Oh just wait until you're a teenager...then you're really going to blah, blah, blah.  Or when one of our daughters is being dramatic and we throw up our hands and say, Girls! then it follows that whole self-fulfilling-prophesy thing and we've just told our daughters that we expect bad behavior and that it is normal simply because they  are females.   For those of you who've talked with me about feminism before, doesn't this all feel very anti-feminist?  Yikes.  Why are we teaching ourselves and each other that females are so bad, moody and mean?  Of course this doesn't just happen in the context of girls.  Another example of this framing idea is when people talk about "middle child syndrome."  I feel like this is one of those issues people tried to push on me as a kid (and now even Lamp gets it!).  Oh well of course you feel that way, you're the middle child!, and I was confused then and am still confused now.  I didn't have issues with being a middle child, but I do remember taking cues from the adults around me and acting the wounded middle child part from time to time.  I'm not suggesting that we don't discuss things that need to be discussed, but that we're careful with how we discuss it.

I'm not naive enough to think that positive verbal reinforcement is somehow going to solve all our future issues that can come with teenagers and the female psyche.  The truth is we may have drama in our house as the kids get older.  And I do believe that girls on the whole come with different issues than boys on the whole.  But they're not worse issues.  And I'm not going to talk to my children as if I expect this behavior and I'm certainly not expecting it simply because they're girls.  


What do you think--are women really more drama than men?  Do you feel like you have more positive female relationships or more negative female relationships?  Are there mean boys?  Can anyone else relate to the idea of being labeled a certain way and then acting out to fit the label?  I'm not in favor of complete gender neutrality--I do think boys and girls are fundamentally built differently.  I just feel like we come down hard on females for behavior that is more of a human problem than a female problem.  I'm sure this goes both ways--what are you mothers of boys warned about?  Discuss.  


*Art--Backstage by Michael Carson

Tuesday, October 14, 2014

Fall


Oh the bitter winds are coming in and I'm already missing the summer.  Stockholm's cold, but I've been told that I was born to endure this kind of weather.    --Emmylou, by First Aid Kit


Sometime last week we started bundling up pretty well each morning as we walk PSP down to the bus stop.  Often by the late afternoon the weather has warmed up substantially, sometimes being hot even, leaving me tugging at my sweater and pulling off extra layers to absorb the last bit of this indian summer.  I've been saying for years how I've missed the fall and that I can't wait to see snow again.  But now that the colds almost here, I'm not sure I'm ready.  I've talked a big game, but I'm realizing that San Antonio has made me soft to cold weather.  

Fall is a season not really appreciated until you're grown up--at least that was the case for me.  I always considered myself a die-hard summer loving girl until sometime my mid 20's when I distinctly remember craving fall for the first time.  Sure the clothes are great--boots, sweaters, hats, scarves.  But fall is what sends you inside literally and figuratively as well.  Summer is outside, playful, fun loving and free spirited.  Fall is moody, introspective, unpredictable and thoughtful.  This desire for fall brought a shift in life perspective as well.  In a word--balance.  For a long time I wanted life to be summer all the time.  Figuratively at least, which is to say fun and free spirited.  But my mind and my spirit crave introspection, slowing down and even some dreary days.  After our first really intense summer in San Antonio we had a mild fall and winter and it seemed like summer was upon us again before we knew it.  I said to B, I'm not ready for summer.  We haven't earned it yet.  I don't remember feeling the same way the following summers... I'd gone soft.

While I've been waiting and craving this weather for years, now that it's here... I'm feeling hesitant.  Probably because I'm in a more fall phase of life right now as well and I worry that I've gone soft in more ways than one.  But as the lyrics state above, I think we're all born to endure this kind of weather.

On the plus side, the colors are blowing my mind.

Here are some of my favorite fall pictures so far.   If you follow me on instagram you've probably seen a lot of these.  You can follow me at thislittlemiggy.   








Friday, October 10, 2014

Special Needs Spotlight || Rachel


 


Hey guys, Migs here.  You know I used to write a little something before the spotlight and I think I'm going to give it a try again. So today's spotlight comes from Judy who is a mother of 3 grown children, one of whom--Rachel--was born with spina bifida. I'm so glad Judy was willing to share her story with us today as I always think it's valuable to hear from parents who have already been through the child-rearing phase of this journey. I appreciate Judy's candor--it was not and is not easy being the primary caretaker for a child, now adult, who is both physically restricted and medically fragile. Even the fact that Rachel was born in 1980--younger than me--makes you realize just what a different world Judy was raising her family in. Judy gives some great insight about how she and her husband have stayed connected over the years. Also, one thing I couldn't help think about over and over again reading Judy's words were how should legislation, regulations and insurance companies (I don't even know which would apply so I'm just using them all) be changed to be more beneficial for families who need additional help? I'd love to know more about these things. Anyway, please enjoy today's spotlight...it's a good one.



Hi, I am Judy and have  been married to my husband, Bob, for 41 years.  We have three children: Rachel, 34; Zachary, 30; and Molly, 26.  Rachel was born with spina bifida and hydrocephalus, although the hydrocephalus was not immediately apparent or suspected.  Prenatal exams and studies had not predicted that we would be facing anything troubling when our first child was to be born.  So, when Rachel was delivered, we learned only on the spot that she had an abnormality on her back - one that we suddenly learned meant she had myelomenigocele, more commonly known as spina bifida.


***************

Miggy:  Judy, thank you so much for participating in today's spotlight. You have a grown daughter, Rachel, who was born with Spina Bifida and who you raised her long before the days of Google and the internet. I always love hearing from parents who are further along in this special needs journey as I know there is so much that those of us still in the thick of child rearing can learn. So first, can you take me back to the day you learned Rachel had spina bifida? Do you remember how you felt, as well as the reaction from those around you? How has your view of this diagnosis changed over the years? (Or has it?)        

Judy:  At the moment of Rachel's delivery, what should have been an experience of sheer joy and relief, suddenly turned into an overwhelming crisis.  We were shocked, confused, totally unprepared and uneducated about what we were all to face, and we were suddenly barraged with misinformation mixed in with reliable information, but we wouldn't yet know the difference between the two.  I just remember being immediately, incredibly sad, and I remember that Bob was more or less trying to logically assimilate all the information and preparing to break the news to unsuspecting parents and grandparents waiting just outside.

When Rachel was born, 1980 was still the era of "Baby Doe," where some children with myelomeningocele were more or less given what would today be considered hospice care, at birth, without surgery or other treatments.  That's the way things were then.  The only informational resources available were the opinions of doctors, my husband's medical textbooks, or the parents of similar children.  Most of the medical information in print was typically at least ten years out of date, considering the early neurosurgical advances that were actually being made.  Fortunately, Rachel was born at a major metropolitan hospital, one where she was hospitalized for the first month of her life, so medical ignorance wasn't as rampant there as it might have been elsewhere.   On the other hand, no one at that hospital had advised us that there was a children's hospital nearby that was in fact one of the leading specialized centers for myelomeningocele. The hospital of Rachel's birth, now long defunct, had prided themselves on being a top notch medical center, so they did not refer us to the children's hospital.  We would have known that, had there been the Internet with a search engine back in 1980.  But, within a couple of months, Rachel began care at the more appropriate, specialized hospital.


Miggy: Rachel lives with you and as you explained is still very medically fragile. Can you explain how Rachel’s needs affect your day-to-day life? How has this changed over the
years? For example do you have other children and if so what was it like taking care of your daughter's needs while also taking care of other children? You also mentioned getting this diagnosis while your husband was in medical school...wow! I can imagine this brought a lot of additional stress to an already stressful time of your life.    
 
Judy:  Over the first few months of her life, Rachel had a few surgeries, and we gradually became the ones who knew her best.  Due to severe dysphagia, she was NG tube fed for the first nine months of her life, and I changed those tubes every three days, myself.  She did go on to eat somewhat normally, but only while being restricted to baby foods for the first three years of her life, while undergoing intensive physical therapy, occupational therapy, feeding therapy, speech therapy, etc. that she and I would travel to in order to receive.

Our next child, Zach, was born when Rachel was four.  It was a delight to have a "normal" healthy baby to deliver, nurse and raise, but in retrospect, Zach felt somewhat limited in his childhood by our availability, especially during prolonged hospitalizations, and because of his father's call schedule, and even because of my frequent appointments for Rachel.  Nonetheless, Zach and Rachel developed their own relationship, and we went on to have Molly, when Zach was four and Rachel age eight.  


Molly was born with ears that did not fully develop: bilateral microtia with atresia, and as a result, her prognosis for normal hearing and regular facial appearance was at first uncertain.  Very summarily, Molly had many reconstructive surgeries and ended up to be just fine.  We are looking forward to her wedding in May, 2015.
Rachel was actually more physically robust and independent when she was younger.  She rode in a little "Star Car" until age five, when she got her first manual wheelchair.  She has had several wheelchairs over the years, and even a couple of power chairs, neither of which was practical for her.  We have also had a succession of handicap accessible vans to accommodate our family travel needs.
In 1996, Rachel had very serious spinal surgery that left her with both a tracheostomy and a G-tube.  She slept with the use of a CPAP machine at night, and later it was a BiPAP machine, and finally a ventilator.  With time, the ventilator was needed around the clock.  Despite this, we have traveled as a family, even going on two cruises prior to her complete dependence on her ventilator, as recently as 2006.  

We never needed nurses to assist Rachel until after her 1996 spinal fusion, and then everything changed.  Following a three month hospitalization, we had in home nurses around the clock, but later less hours were covered by insurance, and eventually, we exceeded our insurance lifetime maximum benefit, leading us to find, fund and train our own nighttime nursing care, or doing it by ourselves, and sometimes with nurses helping out by day.  We've had over the years nurses who have been like family, and we have had nurses that were outright scary, but we developed a system, and we are fortunate to be getting by.

For the past several years, Rachel has been able to eat a fairly normal diet, but each meal takes up to two hours, and constant vigilance and suctioning is required for her to eat.  This is the most strenuous part of our day.  Until Rachel became permanently dependent on her ventilator, we used to travel as a family, and Bob and I would travel for long weekends once per year - now not so possible.   

Leaving the house with Rachel requires a lot of planning and equipment.  Between the ventilator and suction machine, both hooked to the back of the wheelchair, it can be quite exhausting.  This is something I worry a lot about, having the ability and strength to continue to care for Rachel’s needs as I get older.


Miggy: Judy I'm interested in hearing what childhood was like for your daughter--and
perhaps she can help answer this question as well.  Did she have friends, did she enjoy school? Was Rachel ever bullied or teased for being different? How did you handle this as a family and how did your daughter handle this individually? Any words of wisdom you'd like to impart on us younger parents when it comes to these things?

Judy:  Rachel only recalls two instances of being bullied in grade school and each time a teacher came to her defense.  Looking back on it, Rachel feels her childhood wasn't that dissimilar from anyone else's, with the exception of her surgeries, hospitalizations and therapies.  The kids she grew up with were generous in tolerating her physical limitations, and the friends of her brother and sister just accepted her for who she was, without any significant barriers.  The area we live in is one where people tend to be more inclusive, and it is fortunate that no one bothered her in that way.  I remember in first grade every Monday a new student was assigned to sit next to Rachel and be her helper.  One mom told me that the kids loved this opportunity and looked forward to being her helper.  Another mom, who was a nurse, insisted that Rachel join the Girl scouts and that she was well equipped to care for Rachel at the meetings.  It’s funny how these two kind acts are still so memorable to me.


Miggy: One of the things that has always been important to me is making sure that Lamp’s disability doesn’t define her life or our family.  Having a daughter who needs a lot of assistance I can imagine that finding a balance over the years would be difficult. Did you and your family make conscious decisions to help create some balance in your
lives? (Having help in the home, weekly date nights, etc?)

Judy:  We still make it a point of having date night every other week, it is so important and not one that should be neglected.  You can’t take care of others unless you first take care of yourself and your marriage.  Life is not easy for us, and sometimes it is hard to avoid judging those who complain about having much less to do.  I don't always feel part of the company I am with, and often feel like I am in my own unique category in life.  Despite all the pressure, the time constraints and financial hardships, we have always been able to have a good dog, a nice cat, and the freedom to pursue various hobbies.  Rachel, herself, does art.  I have done mosaics and knitting, and I love to read and workout.  Bob has sailed and ridden motorcycles most of his life, and he still does.  In his fifties, he became a flutist.  Rachel enjoys going to plays with me, listening to music and having Bob play Broadway music for her.  Humor has always been part of our personalities, whatever the situation, and it has remained that way.   



Miggy: Will you share one lesson or trait that you've learned from being a special needs
mom?
Judy:  It is easy to worry about what the future holds for your family.  Someone once advised me when Rachel was a baby to try to take one day at a time and to focus my efforts on the present.  I still find myself going back to that advice when I worry about our future.  You really can't afford to be afraid.  Work on establishing a vision for your special family situation and try to make it happen.
Thank you for this opportunity to share my family with you.  I have to confess that it was a bit painful reliving some of the more difficult challenges in being Rachel's mom, but at the same time I marvel at how positive she is in light of her medical needs.

***************

Judy, wow... thank you so much for sharing your story and your daughter Rachel with us today. You're a great mom. You probably know that, but I just wanted to reiterate it. Hugs to you and your wonderful family. I'm so glad you all have each other.

If you or someone you know would like to participate in the special needs spotlight series please email me--or have your friend or family member email me directly--at thislittlemiggy at gmail dot com.

Have a wonderful Fall weekend.


Thursday, October 09, 2014

When Confronted with Ugly




Last week the girls begged me to drive them to the store for some art supplies for a project they were dying to do.  I could write a whole post on going to the store with my 3 littles which include one baby and one 4 year old non-walker--the do I bring the power chair, double stroller or single stroller dilemma?--but that's another post.  So we stopped in to a Dollar Store and was bummed to only find 1 of our 3 specific art supplies.  We made our way up front to pay for said art supply and when we got to the front of the store there was a scene already playing out.  A customer was very agitated at the manager and it was quickly escalating.  The customer went from talking loudly, to yelling and threatening the manager in just a few seconds.  Cussing, dropping lots of F-bombs, and again threats.  OK I wasn't going to go into the whole do I take the power chair or stroller scenario, it actually comes into play so let me just explain.  It was a quick trip, I didn't want to take the time to get the power chair on and off the lift, but that also means I couldn't bring the double stroller because I can't open the back of the van with the chair on the lift.   So I decided to put Lamp in the single stroller and hold Zuzu.  So with a baby on one arm, a diaper bag on the other, Lamp in a stroller, and my 7 year old by my side I'm standing there with my innocent babes, watching this scene unfold and growing more than a little anxious.  I am expecting this to come to blows at any second.   And the thing is this guy cussing the manager out is sorta blocking the front door so it's not like we can just quietly leave and get out of the situation.  Additionally, my hands were literally full and I felt that much more helpless to protect my children should I have needed to.

So we stood there with other customers, looking while trying not to look, and absorbing the tension and anger being carelessly thrown about.  As I stood there holding my 7 year olds hand--the only one I think who really saw what was going on--I was hoping I could somehow absorb her share of the anger and ugliness.  Fortunately, the angry customer walked out before it escalated into violence.  The woman next to me literally sighed in relief.

I still felt an urge to get out of there as fast as possible so we paid and booked it to the car.  We stopped in one more store and on the way in I grabbed PSP's hand and asked if she was ok.  She nodded.  I asked her if that scared her.  She nodded again.  I agreed and told her it was a scary situation.  I told her that there are a lot of scary things in the world, bad people even, but to remember that no matter what there is always more good than bad.

I was saying this for my benefit as well as hers as if speaking those words out loud made it so.  Truthfully, I do believe there is more good than bad, but sometimes it's hard to believe as it seems as if the world is filled with ugliness, bad people and evil actions.  I am someone who can become easily overwhelmed with dreadful headlines and news stories so I have to actively seek out the good to counterbalance the bad.  I know our experience was mild compared to what many people, younger and older, witness on a daily basis.   Regardless, I was still frustrated for this scene playing out in front of innocent eyes and me as a mother helpless to do much to shield them this kind of ugliness.

I know they'll be fine, but I also know this won't be the last time they confront these situations and worse.  We'll continue to seek out the good in the world--the beautiful, lovely, kind--and hope that those things build a reserve of evil-absorbing antibodies in their hearts and minds.  No one gets out unscathed in this life and realistically I don't expect my children never to see 'ugly.'  I just hope to present them with enough empirical evidence to prove that there really is more good than bad.


How do you shield your kids from the ugly out in the world?  Or do you?  Can you?  What do you tell your kids when they see or hear about some of the more disturbing, evil or terrible things out there?  My kids are too young to really know the details about 9/11, but situations like that come to mind, or even Sandy Hook.  Do you think about it like building up a reserve of positive energy, do you talk to them when they've seen the bad?  I'm super curious and would love to hear your thoughts.  


Art Herbert Pfostl

Monday, October 06, 2014

Art Sale



Hey guys.  So I'm finally listing these paintings for sale today through both my blog and Instagram.  Here's how it will work.  If you see a painting you want to buy send me an email at thislittlemiggy at gmail dot com with the number of the painting in the subject line, your email address (to send a paypal invoice) and your zip code (so I can include a rough calculation of shipping).  Once I send an invoice you have 1 hour to pay, if I don't receive payment I'll relist the painting.  First come first serve.

The prices I'm selling these at are very reasonable and vary from piece to piece based on size and quality.  Some of these are student pieces that I consider lower quality than other pieces, so even though some of the paintings might be smaller, if they're some of my better and more recent work, the price will be higher.  Additionally, some of the paintings might have little knicks or scratches--again will be reflected in the price and being sold as is.  All paintings listed here are oil and I will specify either canvas, panel (wood) or paper for the backing material along with the dimensions.  Some of these are super hard to part with, so please give them a good home.  I am also working on getting some prints made of some of my pieces featured in this post too--so stay tuned for that as well.

Let me know if you have any questions!  Again, don't purchase in the comments section send me an email!

Thanks!
xo
Miggy

 #1.  $40 + shipping. Oil on Panel.  approx. 24"x24"
Cup study

#2  $40+ shipping.  Oil on panel.  approx 24"X24"
Cup study

#3.  $40 + shipping.  Oil on panel.  approx. 24"x24"
Cup Study

#4.  $150 + shipping.  Oil on panel.  16"x12" (also framed, ready to hang)
Laie Skyline

#5.  $200 + shipping.  Oil on canvas.  15'X22"
Untitled


#6.  $150+ shipping.  Oil on panel.  16"X12"
Big Island Sunset series
SOLD

#7.  $40 + shipping.  Oil on Paper.  Image is 8"x11", paper size is 14"x18.5"
Tulips

#8.  $150 + shipping.  Oil on panel.  16" x 12"
Ohio
SOLD

 #9.  $80 + shipping.  Oil on panel.  8"x12"
Nebraska series
SOLD

#10.  $100 + shipping.  Oil on panel.  16"x14"
Untitled

#11.  $100 + shipping.  Oil on panel.  16"x10"
Untitled

#12  $200 + shipping.  Oil on panel.  24"x17.5"  (includes simple wood frame, ready to hang)
Laie Skyline series

#13.  $80 + shipping.  Oil on panel.  8"X12"

Friday, October 03, 2014

Special Needs Spotlight || Mary



Hi Miggy! Thank you so much for having us, again, to your special needs spot light. I’m thrilled to be here to share more of our story with you and your readers. My name is Kimberly. My husband, David, and I have been married 12 crazy, up and down, marvelous years. We have three children, one boy and two girls, and two dogs. Our youngest daughter, Mary, was recently diagnosed with ALL, acute lymphoblastic leukemia.

***************

Miggy:  Hi Kimberly!  Thanks for participating in today's spotlight.  You've have actually participated in our spotlight before sharing your children William and Mary with us who both have Down syndrome.  But as circumstances have changed we are doing a follow up on your kiddos.  First, will you briefly refresh our memory about your family--who are your children, how old are they and how did you come to find out that 2 of your kiddo's have Down syndrome?   

Kimberly:  We have three children.  William is 10 and in 5th grade. He loves superhero's and basketball. Thinks he’s a big deal and is quickly running out of the phase in which the sun rises and falls with me. Despite this I still make him hug me everyday. He is on a special Olympics team that plays basketball, runs track and bowls. He keeps his room clean, takes out the garbage, feeds the dogs. Pretty much he’s the full package, except for that part where I’m not his whole world anymore.
Ruth is 8 and in 3rd grade. She is a planner. Especially of parties. She plays the piano and recently took up volleyball. Her favorite color is rainbow and she asks endless amounts of questions. She loves to cook and bake and not keep her room clean. She is currently working on a self assigned project about the earth. She’s pretty much incredible.
And finally Mary is 6 and in (sort of) Kindergarten. I say sort of because she only attended one day before being diagnosed with leukemia. She is, and always has been, my little side kick.  But was the sort of baby/child that didn’t have to be near me at every waking moment.  In fact I would often find her sitting in the pantry getting a snack. Once I lost her, or thought I did. We found her in the corner behind the couch eating a loaf of bread. From that time on I’ve taught her to respond when I call her name. I’ll say, “Mary, say hi mom!” and then she responds from whatever corner of the house she’s in with a little, “Hi mom.” Since her birth she has almost always had “sweet” attached to her. She can be sassy but in such a sweet way that she probably gets away with more than she should.  Both William and Mary have Down syndrome.  Both of their Down syndrome diagnosis's did not come until birth.




Miggy:  The main update we're going to talk about today is that your youngest daughter Mary has recently been diagnosed with acute lymphoblastic leukemia.  How did this diagnosis come about and what was your reaction when you heard this terrible news?  Also, were there signs and symptoms that you noticed or was it completely out of the blue?
   
Kimberly:  Mary’s first day of kindergarten was Friday August 15th. It went perfectly. That afternoon I noticed she had a petechial rash all over her abdomen and legs. Petechiae are smallish red flat spots. They occur when tiny little blood vessels, capillaries, bleed. There are a variety of causes of this. One of which is a decrease in platelets. Which can happen randomly but it can also be a sign of a blood disorder. I had a very uneasy feeling but tried to dismiss it.  My college degree is in clinical laboratory science, so long ago I studied various disease states so I sometimes feel like I know too much.  I have to often convince myself not to overreact. However by Sunday mid morning she had come down with a fever, I knew at that point that something wasn’t right so we took her to the emergency room.  Her blood tests showed that her platelets were at 8,000, normal is 150,000-400,000. The E.R. doctor was at a loss and spent time making phone calls to determine where we needed to go.  He finally found the right person, a Pediatric Hematology Oncologist. But she was an hour away, fortunately they let me drive us there.
The next 48 hours or so were a bit of a whirlwind. As soon as we got to the new hospital our new doctor came to talk with me. She pointed out that she had more than just low platelets, she was slightly anemic and while her white blood cell count was normal her neutrophils (one type of white blood cell that kind of fights off everything) was 0. Instead she had increased lymphocytes (which can go up when we’re fighting off a virus, but they aren’t supposed to take over). Because of these three things she felt strongly that she had either ALL, acute lymphoblastic leukemia, or AML, acute myeloid leukemia. The only way to find a definitive diagnosis is by doing a bone marrow biopsy.  Which was scheduled for the next morning, Monday.  By Tuesday we had the results, ALL, and she had another procedure to place her port o cath (a central line which makes for fewer needle sticks) and she also started chemo that day.
Everything happened very quickly. She’d had blood work done just a few months prior to this without any abnormalities so we believe we caught this fairly early. While I have some serious over-reacting tendencies throughout this experience I’ve had a lot of calming peace. I attribute that to my faith, which I’m so grateful for. The moment we headed to the second hospital, and let both our mothers know and asked them both to get the word out, I could feel our families prayers going with us.

Miggy:  I usually ask parents what their day-to-day life looks like with their child's specific needs.  Now that you're a mom of children with Down syndrome and a family battling cancer, what does your life look like now?  How has it differed from before and how have you managed these changes?  (Asking for help?  Schedule or job changes?)



Kimberly:  With Mary going into Kindergarten I had high hopes for what my life would be like with three kids in school all day and all in the same school. After she was diagnosed and we learned that she needed to stay away from groups of people, and anyone who might be a little bit sick, things changed drastically for us.  She will have to stay home from school for the next 4-6 months, we keep her home from church, and most other activities are very limited.  My days are spent managing her care (I have a very thick binder full), keeping track of her medications, and dealing with and combatting the side affects to her different medications.  We’ve also moved her bed and dresser into our bedroom so she’s closer to us.  Which has made the getting up in the middle of the night (think 6 year old newborn) somewhat easier.  And then she has quite frequent doctor visits, which usually involved some sort of chemo infusion.
We stayed in the hospital for about 10 days, after we received her diagnosis. Since she’s come home there was a week we had to take her for fluids almost everyday, because she was so dehydrated. She had mouth sores develop so convincing her to eat and drink was a huge challenge. Once we got the sores under control there was another week we had to take her to have a plasma transfusion (she also received platelets and blood while she was still in the hospital), then there was another week where she was diagnosed with C. Diff. Which is a not so good bacteria that affects the gut. And then last week she was hospitalized because she spiked a fever. Given the fragile nature of her immune system even what might seem as the smallest of illnesses must be taken seriously. She is doing much better now, eating and drinking well. She tires easily and is all around a bit irritable. Even so I look hard each day to see a glimpse of my baby girl. I can almost always find one, sometimes it’s a tiny glimpse but I take the tiny ones with the big ones.
We live less than a mile from my husbands parents and his mom has been a huge help during this time. My mom has come, and will be coming back in a few weeks, which was another huge help. We’ve had so many people ask what they can do before we can even ask for help. Friends bring us meals, drop off “thinking of you” gifts and showered us with so many thoughts and prayers.


Miggy:  I'd love to know how all your children are coping with this new diagnosis.  First, how is Mary doing?  Does she understand what is happening and why?  How are the other two children coping and what adjustments have you made to help the children during this time?
Kimberly:  Mary does understand that she doesn’t feel good. And sometimes she can tell me what exactly hurts. I don’t think she understands what is happening, just that she doesn’t like any of it.  She often doesn’t quite know what she wants, and then gets upset that I can’t figure it out either.  It can be so heartbreaking at times.  She is very weak and doesn’t walk, and only rarely will even bear weight on her legs.  The other day she scooted across the floor, so I’m hoping that is a sign of some of her strength returning. She has also started smiling and interacting with us more.  We have missed her smile!
After we got home from the hospital we decided to give her a hair cut so if and when her hair fell out it wouldn’t be quite so overwhelming.  I had decided I wanted a family picture as well.  Later that night her hair really started to come out.  And a few days later it was mostly gone.  I have since cut it again.  It’s sort of like cotton candy.
The two big kids have done amazingly well.  When we finally had the definitive diagnosis we sat down with them. I knew Ruth would need time to process and ask questions.  While I had hoped we could save the “hair falling out” conversation for later she was already being given meds with that side affect so I couldn’t put it off. In all the things we shared, and we tried hard to keep it age appropriate, the hair was Ruth’s biggest concern.  I think that having it fall out while we were home helped her.  Watching it gradually (over the course of a few days) fall out helped her to see she would still recognize her sister.
With William his compassion comes in the moment. Trying to explain things that aren’t happening right now is harder from him to grasp. Almost every day he asks if Mary will go to school.  But he readily accepts that she can’t go because she’s sick.  He’s quick to say “hi” right to her and sees past the hair loss and the fact that she doesn’t get up and run around any more.
From the beginning of all of this I have worried about these two. How they’ll cope, what they will have to sacrifice and just how all these changes will affect them. We’re trying to tune in more to what they each need. But really they have adapted better than I have thought possible.



Miggy:  Kimberly I think most of us can't imagine all the challenges you and your husband have had to face, especially the cancer.  Can I ask how you are taking care of yourselves at this time?  Also, friends and family often want to be helpful during this time, but often don't know how..  What is the best way friends and family can support your family at this time?  

Kimberly:  Such a good question! And kind of hard to answer. Only because that is something that is hard for me. I want to do everything, but I quickly learned that I just can’t. Having the big kids in school makes the days easier. I can rest when she rests and only having one persons needs to cater to is easier than three. For my husband and I we have found that the best thing to do for each other is to communicate. Something that we have to work harder at than every before. When he knows what I need, and I know what he needs, we are better able to balance each other out. Also I’ve found that it’s important that I take a few moments away from time to time. Even if it’s just to the grocery store by myself. And chocolate, chocolate also helps.
Like I mentioned before we have had many people reach out to us. It’s those that have simply sent notes of encouragement or dropped things off without us having to explain our new “no visitors” policy. It’s people saying, “Hey I’m doing such and such.” It’s our school full teachers who have rallied around not just Mary but our entire family. This experience has taught us that support from family and friends is paramount. It takes a village, you know. And not necessarily in the way that lots of people are doing lots of things for your children. More like a village full of people just cheering you on. There have been moments of worry and stress where I stop and breath and think of that village of people thinking of us and praying for us and their strength adds to mine. That is huge.



Miggy:  Is there anything else you want to share about your family, Down syndrome, or acute lymphoblastic leukemia?  Perhaps some advice for families going through something similar?  

Kimberly:  I have known since William was born that children with Down syndrome have a higher incidence of developing leukemia. Which is one of those thoughts I’ve tried not to spend too much time on. On the plus side having that extra chromosome tends to give them a better prognosis.
For ALL treatment is done in phases. The first of which is induction, which Mary finished about a couple of weeks ago. The goal after induction is remission, which surprised us when we learned that remission could come so fast. We just found out that Mary is in remission. Which of course we are thrilled with but by no means is this the end. The thing of about leukemia is that it doesn’t take many cells for a relapse. They’re pretty sneaky, nasty cells. So treatment will continue for another 2 1/2 years. Right now we go weekly but I think there will come a point where, I think, we won’t have to go as often.
I feel like we are still in the beginning stages of this journey, and I know we have a long way to go, but I’ve come to realize how important it is to find what works for your family. So many people will offer advice, and want to hook you up with others in your situation. While that works for some people it might not work for others. Find what works for you. From the beginning we’ve taken things one day at a time. I’m just now being able to start to look out a week or so ahead. Also I’ve limited my consulting of Dr. Google and only gone to resources given to me by our doctor and nurses to learn and gain information. One of the things the doctor told me, in one of our many sit down and discuss things sessions, was that it was important that we do something each day with “Mary without leukemia.” It’s important to have perspective and not to let leukemia take over everything. Raising two children with special needs, I feel, has given me a very different perspective on life. I have drawn on that perspective more over the past month than ever before.

Thank you, again, for having us. I feel honored to be Mary’s mom, and to be on this journey with her. I love being able to share her with others. Over the past month I have seen so many hearts touched by her, it’s been incredible to watch. Feel free to follow along Mary’s journey, Driving Little Miss Mary.

***************
Kimberly, thank you so much.  I think we all just fell a little more in love with sweet Mary.  What a doll.  I'm sure no one is ever prepared for drastic life changes, but wow... you have really been in a whirlwind these past few weeks.  I am amazed at your strength and adaptability, but as you said you've have experience in being thrown a curve ball.  I am so glad to hear about your village of support and love.  I know people can feel helpless in these situation, we all want to help, but don't know how.   I think what you said is that just doing something--a note, dropping something off--can make all the difference because just knowing you have that support, is what brings you strength and hope.  As another spotlight mom said, just show up.   And yes to doing what feels right for your family--what works for someone else, may not be what works for you.  Great perspective Kimberly.  God bless Mary and the whole family.  Please keep us updated and let us know how Mary is doing.  Big internet hugs!

Always looking for more spotlightees, so please if you know someone who would be wonderful to feature in the spotlight series please tell them all about my blog and then have them email me directly at thislittlemiggy at gmail dot com.  

Have a fantastic weekend.