Carrying that Feeling

[caption id="attachment_1328" align="alignleft" width="223"] Brit enjoying life a few months before she passed[/caption]

When my sister, Brit, died her school posted a poem in her memory.  I must have read hundreds of poems looking for the right one. In the end I chose EE Cummings’, “I Carry Your Heart with Me.”  The words floated off the page and into my soul; together these words communicated the love, the loss, the grief, and the need to keep Brit with me always.  Now that I am parent the poem has taken on an additional meaning.  It is my hope that when I leave this world my ladies will carry my heart with them and in doing so remember the important lessons I have taught them.

I realized this hope for my ladies to keep me with them always is part of the reason that I blog and document their lives as I do.  When I am gone and they are feeling lonely and just want to be hugged by their mom or when they are in a tough spot and are wondering “what would mom think or what would mom do” they will have a piece of me that reminds them of not only who I was but who I encouraged them to be. More than carrying the memory of me, I want the ladies to always carry the feeling of how I made them feel--which I hope is special, wonderful and loved rather than stifled, frustrated and looking for therapy.

I am not sure if is weird that think about things like this at the age of 34 when my oldest child has yet to even start kindergarten.  But after the pain of losing my sister and feeling like there are never enough pictures, never enough videos, or words written by her hand I want to make sure that I ease that pain for those who survive me.  And selfishly as I know how precious life is and that it can be taken away in the blink of the eye I want to create an environment that allows my ladies to live life to the fullest but also to create memorabilia from those experiences.  I am not big on selfies and when we go on an outing I try to capture a few pictures at the beginning or the end of an adventure so that I can focus more on enjoying the moment than capturing the moment.

It all comes down to wherever I am, wherever my ladies are I want them to feel the love I have for them (there is no love like a mother's love) and if they are having a hard day be able to float back and touch a memory that will bring a little joy to a rough day.

Do ever think about your legacy or how to ensure your children always have a piece of you?

[caption id="attachment_1330" align="aligncenter" width="640"] The sign honoring the memory of Brit and her classmate Hannah, who passed away just weeks before Brit.[/caption]

My Medically Involved Daughter Is Not Trampling Your Pursuit of Happiness

“Two things that happened in 2012. We had two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were OK in general. And those are the things that add up into our benefits cost. So when we had the final decision about what benefits to cut because of the increased healthcare costs, we made the decision, and I made the decision, to basically change the 401(k) plan.”

Tim Armstrong, CEO of AOL

The actions of AOL under the leadership of Tim Armstrong are extremely disappointing and epitomize not only the current state of corporate greed but also that of the wealthiest 1%.  Mr. Armstrong makes $12,000,000 annually; however, he cited the $2,000,000 of medical expenses incurred by two newborn babies as the strain on AOL’s resources necessitating changes to employee benefits rather that his own compensation.

Deanna Fei, the mother of one of the “distressed babies” wrote a blog in response to Mr. Armstrong’s comments during which she eloquently spoke to the harm of  Mr. Armstrong’s greed ridden comments, “Our daughter has already overcome more setbacks than most of us have endured in the span of our lives. Having her very existence used as a scapegoat for cutting corporate benefits was one indignity too many.”

I cannot agree more with Ms. Fea’s comments that express her frustration and dismay that Mr. Armstrong felt it appropriate to not only lay blame for changing AOL benefits on the Fea’s newborn born daughter but also the insinuation that it was the Fea family who was greedy rather than Mr. Armstrong:

“Let’s set aside the fact that Armstrong—who took home $12 million in pay in 2012—felt the need to announce a cut in employee benefits on the very day that he touted the best quarterly earnings in years. For me and my husband—who have been genuinely grateful for AOL’s benefits, which are actually quite generous—the hardest thing to bear has been the whiff of judgment in Armstrong's statement, as if we selfishly gobbled up an obscenely large slice of the collective health care pie.”

Deanna Fea

[caption id="attachment_1212" align="alignleft" width="239"] Caroline, my distressed baby, shortly after being released from the hospital.[/caption]

The physical, emotional, and financial toll of giving birth to a “distressed baby” is great.  Our lives were forever changed by Caroline’s entry into the world.  The medical bills, lack of sleep, and endless medical appointments were overwhelming. We had to figure out how to close the substantial gap between insurance and the medically necessary care that Caroline required. I cannot begin to imagine what it would feel like if the medical care Caroline received was cited as a reason my employer chose to change our benefits package. Especially since one of the benefits of employer-sponsored healthcare is that there are lower premiums when all employees (not just the sickest employees) secure benefits…meaning that by creating a large pool of insured the risk is shared among many so when the unexpected happens—giving birth to a “distressed baby”—the burden of the cost is shared.

I also find it interesting that employer-sponsored health insurance was offered as a way to entice potential employees when the federal government instituted wage controls during World War II.  Essentially, fringe benefits like sick days, health insurance, and the like were not considered compensation so they were in affect a loophole that allowed employers to skirt wage controls. Fast forward to today as healthcare premiums are rising quickly many employers are doing everything they can to reduce healthcare benefits. Both commonsense and research dictate that access to healthcare insurance leads to less time off of work just as increased access to sick and vacation time increases employee productivity and engagement. But for some reason, most employers are not willing to learn from the examples of the few responsible employers who have managed to be very profitable yet provide employees with access to benefits that increase productivity, loyalty, and employee satisfaction—Google, SAS (Statistical Analysis Systems), and the Boston Consulting Group  to name a few.

To be fair, AOL and Mr. Armstrong are not the only examples of corporate greed trampling not only the livelihood but potentially the lives of the medically fragile members of the workforce (and their family members)—who are the backbone of industry and progress in America—they are simply the most recent example.  It is my hope that as a collective we will demand that corporate America treat those who keep America running with the respect and dignity we so rightfully deserve and in doing so allow the American workforce the ability to pursue their happiness or version of the American dream.

And to Ms. Fea thank you for speaking up and sharing your story.

But You Don’t Like to Be Touched

I tried to choke back tears but when that was no longer possible, I sobbed quietly to myself.  In a matter of seconds John paused the movie. “What’s wrong?” he inquired.  We were watching “Temple Grandin” which chronicles the life of its namesake “an autistic woman who became an unlikely hero to America’s cattle industry—and to autistic people everywhere,” as explained by the official movie synopsis.  We had just watched a scene where Temple’s mother was leaving her at a boarding school, when Temple’s mother tried to hug her Temple shied away and resisted. “It makes me sad and scared to think of a day when Caroline might not find comfort in a hug,” I managed between sobs.  And John’s response demonstrates one of the reasons I love him so, “Kacie, you don’t like to be touched.” Hmmm, he makes a good point, an obvious point.  I proceed to amend my previous statement, “Point well made. I guess what I am feeling is twofold: First, I don’t want Caroline to be in a constant state of angst about whether people are going to touch her; and second, self-interest, rightly understood, I want Caroline to find comfort in my hugs.”

This one scene led me down a path of introspective self-discovery that forced to the surface a new awareness that I had been suppressing.  I hoped that by exploring my intense desire for people to respect my personal space (with few notable exceptions) and the equally strong and antagonistic desire for Caroline to be comforted by my touch I would not only grow as a person but I would be better suited to provide Caroline comfort in a way that was meaningful to her.

Caroline currently loves when I hug her because I make hugging a sensory filled experience that involves throwing her in the air or swinging her between my legs. My fear of Caroline not wanting to be hugged or touched is rooted in the understanding that, “there is no single behavior that is always typical of autism and no behavior that would automatically exclude an individual child from a diagnosis of autism” but that many autistic people do not like to be touched. This fear is compounded by the fact that I don’t recall a time when Caroline has initiated or requested a hug. The best way I have learned to comfort Caroline is by distracting with her with a song or one of our many inside jokes.

When my ladies are hurt or sick my heart aches—with Vivian a hug or snuggling is a reciprocated act offering mutual comfort—this is not the case with Caroline. People with autism spend a lot of time in their own world, one of the diagnostic criteria deals with a decreased or inability to share joy with others.  Despite Caroline’s decreased ability to share her joy, she brings a tremendous amount of joy to everyone in her life. Caroline is infectiously happy, I can’t help but to be happy when she is around. I have decided that Caroline does not have a decreased ability to share joy but rather she just shares it differently. And if Caroline shares her joy by being infectiously happy, I should be able to find comfort in by ability to calm her regardless of means.

Do you think it is selfish that I am concerned that one day Caroline will not want to be hugged, especially given all that she deals with on a daily basis?  When I proactively worry about things like this, I feel like I am not only being selfish, but I am doing a disservice to Caroline by stressing about a problem that may never exist.

It Takes a Village

Becoming a parent is a self-affirming experience. When I became a parent not only did my priorities become apparent but I strived  to become the best possible version of myself. I believe this process was aptly described by Hillary Clinton in It Takes a Village, “Parenthood has the power to redefine every aspect of life - marriage, work, relationships with family and friends. Those helpless bundles of power and promise that come into our world show us our true selves- who we are, who we are not, who we wish we could be.” However, when one becomes the parent of a special needs child there is a parallel transformational process that occurs. For me this process, involved accepting that Caroline was medically involved and has special needs, learning that Caroline was "different but not less," and trusting myself and others enough to ask for help.

Asking for help has always been a challenge for me but during some of the darker moments in my personal life I have been overwhelmed by the support and comfort offered from others.  It is not my first inclination to ask for help but I have learned that the collective capacity of my village far surpasses my individual capacity, especially during a difficult situation.  When I learned that the insurance policy offered by employer specifically excluded any services under the diagnosis code of Autism, I was red with fury. But as a parent of a child on the spectrum I did not have the luxury to wallow in my fury instead I had to focus on solutions that would provide care for my daughter now.  I decided that I would use crowd-sourcing to try and raise the funds. I discussed this idea with my husband, John.  "If you think that is the best way to provide Caroline with the therapy she needs, let's do it." But just as happened when I started this blog his reaction was the same, "I did not realize how much of ourselves we are sharing with others." John is a very private person and when we met I was, too. But overtime I have found comfort in sharing my story my others just as I found comfort in learning how others navigate challenging life situations.  John understands the therapeutic value of this to me and therefore is willing to give up a little bit of privacy for may sanity.

When we decided we would use crowdfunding, Giveforward to raising funds for Caroline's therapy, we knew the fundraiser had to be short because we needed the funds to start the therapy. Two weeks. We figured a short break from therapy would not be the end of the world and if we raised for funds for two weeks, we would receive the funds within a month and could start therapy soon after.  I cannot tell you how overwhelmed we were by the kind and generous support of our village. So many people donated funds and even more helped us spread the word about Caroline's fund.  Not only will the funds raised help provide Caroline with the much needed therapy but it also reminded me of the kindness and generosity that surrounds me on a daily basis.  It also demonstrated what a lasting impacting John has had on the life of so many of his students--their kinds words brought me to tears. I know my husband is an amazing man but to see what he means to so many students warmed my heart.  I honestly do not think there are words to express how humbled and thankful John and I are for the outpouring of support.

And while, I have spent a lot of time speaking about the support we received during our recent fundraiser, I want to be clear our village is much larger.  To Chris, Michelle, Dawn, and my parents all who dropped everything on at least one occasion to watch Vivian while we rushed Caroline to the hospital; to my dad for spending nearly 7 months in Chicago caring for Caroline because no schools we could afford would accept a child with a feeding tube, to Lizzie for being a wonderful and amazing date night babysitter for our ladies, to all the therapists who have helped Caroline develop the skills she needs to manage or overcome some of her challenges and to those same therapists for providing me with the encouragement that I needed during some of the difficult days; to Montessori Learning Center of Edison Park for not only accepting Caroline as a student but as a person and for working with us to provide Caroline with an education that was appropriate for her; Caroline's first teacher who knew how to challenge Caroline with overwhelming her; to John's mom for caring for the ladies during two cross country moves and for always looking for ways to be helpful, to Kristen for being the MOST amazing nanny, teacher, therapist, friend, and new member of our family (our Howie); and again to Dawn--for everything. I know I have missed many, many people.  But please know we appreciate everyone who has helped us along the way. And to those who I have been short with please accept my apologizes, l try every day to give everyone the consideration I would like but some days I fall short.

So I started with thoughts about parenting from Hillary Clinton and I would like to end with thoughts about life and seeing the good in every situation from Mr. Rogers, "When I was a boy and I would see scary things in the news, my mother would say to me, "Look for the helpers. You will always find people who are helping." To this day, especially in times of "disaster," I remember my mother's words and I am always comforted by realizing that there are still so many helpers – so many caring people in this world." Thank you all the helpers.

Thank you to everyone who is part of our village.

Together We Can

When I first realized that there was something “wrong” with Caroline, I did not tell many people the extent of the problem. John and I suffered in silence. We did not stop volunteering for extra responsibilities at work, we did not bow out of bringing homemade snacks for Vivian’s class, and we did not sleep.  I did not want people feeling sorry for us.  But as things progressed and we could not hide some of the challenges we were facing-I became an open book. I felt like others could benefit from my experiences and my candor, so I shared.

I have navigated four different insurance policies and social service programs in three states since Caroline’s birth. My previous professional experience working for government and in nonprofits came in handy as it offered me a fundamental understanding of bureaucracy and advocacy.  This week, I hit a brick wall in terms of my ability to provide for my daughter.  You may have been following my attempts to get Caroline’s speech services covered by Cigna. I thought I had been successful; however, I learned this week that under the insurance policy offered by my employer Speech, OT, PT, and ABA are not services currently covered for those with a diagnosis of Autism.  I called Cigna and pleaded my case; they suggested I call my employer.  So I did just that, I called the VP of Talent.  He very politely explained that he could not make exception to allow these services to be covered for Caroline at this time. But he could offer a silver lininig: OT, PT, and Speech would be covered as of January 1, 2014.  I took a deep a breath and referenced the research that spoke about the importance of early intervention and intensive therapy—I choked back tears as I explained this decision could be the tipping point between my daughter, Caroline, being high functioning and being institutionalized as an adult. I explained that these four months are essential and that it would cost me $15,000 out of pocket to pay for Speech, OT, PT, and ABA.   He explained that as a parent he understands how difficult and emotional this must be but there was really nothing that could be done. Now logically, I know you catch more bees with honey but I also know I don’t have time to beat around the bush.  My employer was either going to be helpful or they weren't. I needed to know immediately so I could figure out my next move.

I have learned the hard way that having a child with special needs turns life into a game of chess. Every move needs to be calculated. One must always be thinking about the consequences of each and every action and this must all be done in a sleep deprived, highly emotional and stressed state. And believe me I know, life can always be worse. Today, I read a story about a loving mother who killed her severely autistic son because she could not receive the support she needed to treat the medical condition that exasperated his autism symptoms. Four years ago, I would have judged that mother and questioned her humanity--today, my heart aches for her son and for her.

In the moment,  when I was told there was nothing that could be done to get my daughter the medically necessary therapy she so desperately needs and I felt like I had exhausted all options I was mad, so mad. I was seeing red.  I could not think straight and I could not hold back the tears-strategy was not top of mind in that moment. All I could see was Caroline in an uncontrolled fit of rage because she was frustrated by her inability to communicate.  We had come so far, I had fought so hard every step of the way to make sure that Caroline was receiving the services and the support she needed—only to be shut down now. Now, that she was starting to really eat by mouth, now that she was saying “bye-bye” and “more”, now that she could walk up the stairs. We have overcome countless surgeries, feeding tubes, and daily therapy since she was six months old. I was not the parent who put her head in the sand when I saw a problem; I searched for an answer and for the best treatment options for my daughter.   I thought about taking FMLA so I could work with Caroline using some of the strategies I observed but I realized that we need the money I would receive from selling back my sick days.

I am angry and frustrated but mostly worried about Caroline’s future. I don’t where to point my anger anymore. Is it my employer’s fault, Cigna’s, mine, the government’s—who knows?  During this moment of crisis it is not prudent to wonder why this black hole of care exists—one that will likely bankrupt my family and many more like us. But rather, I need to focus on solutions that will allow Caroline to resume receiving much needed therapies.   

To help Caroline receive these much needed therapies donations can be made via giveForward.

Overcoming My Biggest Fear

Today, on Caroline's third birthday I am overwhelmed with emotion as I look back on all that we have been through and all that she has accomplished. My biggest fear entering motherhood was raising a child with special needs. Entering parenthood, I had already felt the pain of losing a child when my baby sister, Britney, passed away at the tender age of 9 and half (she was 18 years my junior). Thus, I became a mother already knowing and understanding that each day with any child I welcomed into this world was a gift and that tomorrow is not promised.  And to deal with the immense weight of that reality, I worked very hard to create an environment that would allow my children to thrive but also to experience life to the fullest at a young age.  For me the fear of raising a special needs child was two fold: I did not want to see my child live a life filled with pain and discomfort; and I did not know how to create an environment that allowed Caroline to experience life to the fullest given her medical and developmental challenges.

In a previous blog, I explained the challenges of bonding with Caroline as the pain of losing Brit was still so fresh.  And for that reason, it took me awhile to get to really know, Caroline. But now that I know Caroline and I see all that she is capable of I know how to create environment that allows her to thrive and makes her happy.  Caroline has an infectiously happy and curious personality.  Her lack of boundaries allows her to wander in the hearts of many. She is tiny but mighty; calm but excitable; distant but loving; and intense yet passive.  Raising child filled with these contradictions is both rewarding and challenging.  I have realized that by embracing Caroline's passions and following her lead, I can not only provide her the tools she needs to thrive but also the experiences that make her happy.

[caption id="attachment_941" align="alignleft" width="300"] Caroline at the pet store to see frogs as part of her birthday celebration.[/caption]

Today, on Caroline's 3rd birthday I realized that big party was not the appropriate way to celebrate.  John and I spent a lot of time thinking about what Caroline was interested in lately and crafted a weekend around her interests.  Caroline LOVES pizza and garlic bread so we went to pizza place for lunch; we bought her a toy frog that sings and spits water for the bath and allowed her to take an extra long bath, we went to the pet store to look at frogs (her newest obsession) and have plans to go swimming (Caroline has always loved to swim) and to go see a movie (Caroline loves popcorn, music and the bright colors in movies--my little sensory junkie).

Caroline has helped me to not only overcome my biggest fear of parenting a medically involved child with special needs but has showed me how rewarding it can be.  She has taught me that the simple pleasures in life should not be overlooked and just because today is a bad day doesn't mean tomorrow has to be. Caroline has also taught me the importance of asking for help--I am so thankful to the many amazing therapists, teachers and doctors who have helped Caroline overcome so many challenges and achieve so much. Self interest, rightly understood, I am also thankful to these same individuals for offering me perspective, a shoulder to cry on, or a friendly ear as needed.   I understand it takes a village and I am so thankfully for the village that has contributed to and shares Caroline's successes. And of course, when considering all those who have contributed to Caroline's success and growth I cannot, thank my husband, John, enough for always seeing Caroline as perfect; Vivian for being an understanding big sister, my dad for spending months taking care of Caroline and demonstrating a tenderness and patience I did not know he was capable of--there have of course, been many others who share Caroline's success and who have supported our family during the dark times and to each of you, I am forever thankful.

Happy 3rd Birthday, Sweet Caroline--I can't wait to see what you will accomplish this year!

Mommy Guilt

I am not the type of person who cannot , not work outside the home--I tried once, I ended up being named Communications Director of the network of charter schools where my husband was employed. Work is my zen place. At work, I have the opportunity to create beautiful opportunities for individuals to engage with meaningful information that impacts lives.   I am challenged on a daily basis in a way that helps me grow as a person. And while I take my career very seriously at the end of the day it is a job. The moment I realized it is just job, is the moment it became an opportunity to make meaningful decisions that did not have life or death consequences attached.

I think I am good mom-not a great a mom. I am concerned, involved, and mostly available.  The mostly available part is somewhat ironic as when the topic of having children was discussed with my husband (before marriage) he said, "They never go away, they are always there, it worries me." I tried to calm his fears by explaining that is why there are two of us.  I will admit more often than not, in recent months, I am the one more likely to sneak moments to myself or little breaks.

When I started working in my current position, I started working crazy hours. I liked what I did and the company culture was intense. It took me awhile to realize that I was frequently the last to leave in the evening and that I was working at home almost every night. When I finally asked myself why I was working like this---I realized the answer was complicated.

• I wanted to be viewed as a professional not as a working mom or as a working mom of a special needs child. This was hard to pull off because I talked about my kids at work but I thought that I could talk about my kids because I was getting so much accomplished.


• I also felt like if I worked hard enough I would finally get compensated in a manner that would allow to adequately provide for my family, especially Caroline.


• And finally, I felt like work was an environment that was easier to control than my personal life--I needed a place where I could feel successful.

I will be honest at first business travel was a welcomed break from the responsibilities of being at home and an opportunity to be fully engaged with work well into the evening hours. However, now as the travel is weekly, I find myself seeking out creative ways to stay engaged with the daily activities of John and the ladies'.  We Facetime, as much as possible, exchange pictures (in the vein of where in the world is Mommy), and plan for quality time when I get home.  I also still coordinate all of Caroline's care from wherever I am, so if a therapist needs to reschedule I handle it-so John doesn't have to try and figure out the whole schedule when I am gone.

I am a mom and just like most every mom I know, I suffer from the dreaded "mommy guilt". Travel isn't the only reason for "mommy guilt" there is also missed activities, not spending enough one on one time with each of the ladies,  my short temper (especially when there is whining involved), frequently forgetting Friday is Show and Tell Day,  and my lack of  interest in watching "Jake and the Neverland Pirates." But at the end of the day after I repress all that guilt, I think that it is important for my daughters to see their mom as a professional, who has commitments beyond them.  I am happier when I am fully engaged and being challenged professionally, which makes me a better mom and wife. My career forces me to disengage from Caroline's care for bits of time, it offers a mental break from many stressors. This is not to say my career is stress free but professional stress is so different.

My family supports my career because it is important to me. Just as I supported John's career by moving to Texas, and as we support Vivian by providing her opportunities to engage in activities (swimming, dancing, piano), and for Caroline when she expresses an interest (such as going outside) we drop everything to make it happen because she so rarely makes a request.  The headline being, as a family we support each other's priorities.  Self interest rightly understood, when the members of our family are happy it is easier for us to be happy :).

If you are a traveling parent how do you find balance? How do you deal with parental guilt?

--written from Atlanta, GA.

Diagnosis

I wrote the following a few days after Caroline was diagnosed but was to not ready to share:

The words stung like nothing before and that is saying something as I am no stranger to tragedy or adversity.  I had been asking the question for nearly three years but now that someone was willing to answer the question-I wished I would have never asked.

Is it better to know?  Of course, it is.

Will I be able to come to terms with it? In good time.

What are the next steps? Fight, fight like I have never fought before.

Caroline is engaging, hardworking, funny, and joyful.  She also doesn't sleep often, is fed through a g-tube, has over a 40% developmental delay, and is medically involved.  And now, one of the best developmental pediatricians in Chicago feels like, "Caroline is on the Spectrum...she is not a typical presentation but she is on the Spectrum."

When I heard those words, the first thing I thought was at least we have an answer. But I didn't stay there long, I immediately drifted to do I agree with diagnosis? And have been stuck at what does this mean...for Caroline, for our family, for me??

-------------

Today, I wrote:

Autism (moderate to severe), Mixed Expressive Language Disorder, Motor Coordination Disorder, Sensory Processing Disorder, ADHD, Failure to Thrive, Reflux, and Severe Global Developmental Delay. Everything preceding Failure to Thrive, we learned about in the last month.  At first, I wasn't sure about the Autism diagnosis but in the time since the diagnosis Caroline has picked up several obsessive behaviors, her need for sensory input is rarely met.

There is no time to process what this means.  The books tell me that I need to "grieve" for the loss of the parenting experience I imagined when I first discovered when I was pregnant; however, they also admit no responsible parent with a child who has received this diagnosis has time to do so.  Don't get me wrong, I find time to cry and places to direct my misplaced anger--sorry John and any telemarketer who calls me.

Ever since the Autism diagnosis was confirmed I have been mobilizing.  Our amazing developmental pediatrician recommended intense therapy around 40 a week. 40 hours a week! All the literature says early intervention is key to her success, it can make the difference between high functioning and not so high functioning.  I have been trying to get a straight answer out of my insurance as to what therapy is covered and how much therapy is covered for weeks. Based on the information, I have received the ideal amount of therapy would cost about $100,000 out of pocket for the first year alone. This does not count doctor appointments, prescriptions, eternal feeding supplies, medical equipment (weighted vests, etc), or transportation to all these activities.

Caroline is amazing. I want to give her the opportunity to reach her full potential and I will move the world to do so-but I also realize that resources are limited and we have to make tough decisions. I am coming to terms with the diagnosis but I am having a hard time coming to terms with the fact that we will not be able to provide her all the care and support she needs and deserves.  I spend countless hours researching programs, doctors, hospitals and just as much time reading books about kids who have had amazing outcomes trying to figure out how we get from here to there.

My last thought, everything does not  happen for a reason.