Update, New Blog Location, and "I Wonder..."

It's been awhile since I have updated this blog. But that doesn't mean I haven't been writing. I have been busy with my master's degree in Family Life Education so I've been doing alot of writing for that. I graduate in December, 2013 so YAY!!

I have also been blogging somewhat regularly on my other blog for Parenting Children with Health Issues at http://blog.pcwhi.com/. Visit me over there.

Here is a little something I just wrote and posted on Facebook. I received many responses from others who feel the same way at times. It's so hard because I try to be positive and grateful for all of the many good things that we have. And I am VERY grateful for our kids' relatively good health and so much more that I have to be thankful for. There are certainly others in many walks of life that are suffering and have it so much worse. I recognize this. And yet, it is so human, and so healthy, so allow ourselves the space to grieve at times. The key is to accept it and move through it, not ignoring the feelings nor getting stuck there. Not that I do either perfectly by any means but I am getting better at this with practice. ;-) Thank you to all who responded with words of understanding and encouragement. Here's my post:

Just returning from the year end slide show, I wrote this (below). Many of you can relate to this, I know, as you also have kids with CF (or other medical conditions). I am sort of in a blue mood today. One of those days where I'd rather stay home with a blankie over my head. Big transitions like this sometimes bum me out. My daughter is going into Jr Hi and my son into High School. I am so very happy for them and proud. Yet there is a part of me that is afraid. I think I am grieving that they have CF today.

I Wonder...

As I sit and watch the school slideshow, I see all the happy, smiling faces of children ready for summer and excited to move on to the next school year. I see their proud, beaming parents with cameras aimed and ready. And I can't help but wonder:

What must it be like to not have to fight for each breath your child takes?
What must it be like to not spend hours a day on medical treatments just to stay alive?
What must it be like to not have to take thirty plus pills every day?
What must it be like to not worry about every cold that comes along and if it will land your child in the hospital?
What must it be like to dream about what the future holds and not wonder whether or not your child has a future?

As grateful as I am for the many blessings we have and the hope of a cure that is so near, I can't help but wonder....

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Lisa C. Greene is an author, public speaker, and mom of two with cystic fibrosis. Visit www.lisacgreene.com.

Staying Grounded in Reality Laced with Hope

I am working on my master’s degree in Family Life Education. As I learn new things about families, parenting, and raising children with health issues, I’ll share them with you.

In our textbook, “The Expanded family Life Cycle” by McGoldrick, Carter and Garcia-Preto, there was a section that talked about families lacking a time perspective when having problems. “They tend to magnify the present moment and become overwhelmed and immobilized by intense feelings. Or they become fixated on a moment from the past or the future that they dread or long for. They lose awareness that life means motion from the past into the future with family relationships continually transforming.”

Having worked with families dealing with a child’s chronic illness, and in fact experiencing this myself, I really resonated with this statement. The newly diagnosed stage is overwhelming and shocking, bringing on the stages of grief. Interesting new research suggests parents also experience post traumatic stress disorder symptoms in varying degrees. Many parents (and other extended family members, of course) become overwhelmed and immobilized for a time at least. But some can be overwhelmed to the point of denial about the diagnosis (especially with newborn screening where the child’s illness might not be so obvious yet) and refusal (or inability) to care properly for the child’s medical needs.

It’s interesting to note, in the context of the Family Life Cycle, that extended family members can have very unhealthy responses to the diagnosis that set into motion “negative processes” including serious family dysfunction- even in families that were operating relatively well prior to the diagnosis.

As the newly diagnosed stage “wears off” and family members redefine and accept their “new normal” (see “Welcome to Holland” by Emily Perl Kingsley), I think we (and I am speaking for myself here but see it in many others) can become fixated on a moment from the past- whether it’s the diagnosis moment especially if traumatic or perhaps even look with longing to a simpler time before the child was affected by the illness.

Or, we can become fixated on a future we dread or long for. For me, having two children with cystic fibrosis (CF), a life-shortening illness (median life expectancy of 40), I have to work very hard at staying grounded and balanced in reality laced with hope.

I can too easily become fixated on the “not-so-bright future” of my children’s possible death or progression of their disease. This fear manifests itself in very tangible ways. Parents of children with CF- and all other serious medical issues- tend to be highly over-protective or, as I call it, turbo charged helicopters. This impacts and retards the normal social and emotional development of the child. See the movie “The Secret Garden” for an example of this.

Or, I can become too fixated in the hope of a cure or new treatments that will prolong life and delay progression. When such things don’t come quickly enough, it’s easy to lose hope. I have seen this happen often within the CF community and experienced a great letdown myself when a new drug in trial did not have the positive affects that we all had hoped for.

It takes conscious awareness and diligence to stay in a “healthy” place. And if I am in a healthy place, my children will be as well for I am their greatest teacher and role model. This is why I am so passionate about educating this population of families. And myself. :-)

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Lisa C. Greene is a national public speaker, writer, certified parent coach, and mother of two children with cystic fibrosis. She is also the co-author with Foster Cline MD of the award-winning Love and Logic book “Parenting Children with Health Issues.” For more information, see www.ParentingChildrenWithHealthIssues.com.

For more Tips for CF Parents, visit Lisa’s website at www.TipsForCFParents.com.

Wishes Do Come True....

Wishes Do Come True....
by Lisa C. Greene

For years, my two children have been dreaming about their wishes. And, finally, in the space of about thirty days, both had their wishes come true! Let me explain.

Both of our children have cystic fibrosis, a life-shortening genetic disease that primarily affects the lungs (visit CFF.org for details). They knew that people with serious medical conditions could "make-a-wish" and it would be granted. Over the years, they have dreamed about trips to fun places, buying crazy things, meeting Barney, Sponge Bob, Hannah Montana, and the list goes on.

Just knowing that they had a wish has helped them cope over the years. I would hear comments like, "Mommy, having CF is hard but at least I get my wish someday." My eyes would fill with tears and I'd think, "Yes, thank heavens we have a wish to help you, and me, look on the bright side of all of this."

The kids work very hard at staying as healthy as possible given their medical conditions. They do about two hours a day of breathing treatments and chest physical therapy. They take around sixteen medications and various supplements between them. And that's when they are "healthy"! The possibility of a two week hospitalization for IV antiobiotics due to a lung infection is an ever-present threat for both kids. So, the idea of being treated really special for a couple of days was appealing to all of us.

I really wanted the kids to have their wish when they were old enough to remember it. And I also wanted their wish to be something that I couldn't do for them. Yes, Disney is cool but Grandma lives in Florida so we visited there a lot on our own as a family. And trips to fun places, cruises, and shopping sprees were all things that I could do for them if I saved my pennies and planned well.

So, over the years, I encouraged them to think about famous people they might want to meet. That, I couldn't do for them even by saving my pennies. I encouraged them to think of meeting movie stars, famous singers, even the President! The kids had so much fun dreaming about who they would meet someday.

Fads would come and go; Hannah, Justin, and Sponge Bob all came and went. I never said, "No, that's not a good wish" but I did let them know that they should sit with it for a couple of months before they really decided. Inevitably, they would change their minds.

When Jacob turned 12, he decided that he was ready for his wish. Of course, Kasey (age 10) was not to be left out, so she was ready for her wish as well. We filled out the proper forms and paperwork including doctor's signatures verifying the life-shortening nature of CF and sent it off with great anticipation. Imagine my surprise when I received..... a reject letter!! My children were "too healthy" to have a wish. And, I heard rumors that CF was being taken off of the "wish" list because people with CF were living longer and there was the possibility of a cure around the corner.

Now, as a Mom, I was in a real quandary. My children have a life-shortening illness with the life-expectancy being 39 years of age. Yes, they are doing well right now but CF is progressive and that could change at any time, quickly. And all of their lives, my children had been dreaming of, and getting hope from, their wishes. On the other hand, how could I be sad about the fact that my children were not "imminently dying" as the paperwork said?

I had to deliver the good/bad news to my kids. "Good news: you are not dying. Bad news: you've been rejected for your wish because you are not dying."

I certainly couldn't begrudge the wish foundation who rejected us. They are a very fine charity who does wonderful work. I totally understood where they were coming from; we just weren't within their "scope of work." But yet, here I was, with two children with CF, who really needed a little hope; a bright spot.

Enter "Kids Wish Network." I did some research online and found a wonderful organization that grants wishes to children with life-threatening illnesses but doesn't require them to be "imminently terminal". They are dedicated to "infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations." The kids they serve have "faced some incredible challenges in their brief lives, and are in desperate need of hope to get through their difficult times. It is our promise to fulfill and touch these little hearts that deserve some much needed comfort and joy."

Yup, that described my children to a tee. As a mom, I am very grateful to Kids Wish Network and our wish coordinator, Jill Atchison, for making our wishes come true. Within about six months of completing the paperwork, both of our kid's wishes were granted. And they were over-the-top, better than expected, and dreams of a lifetime. Of course, I'll tell you all about their wishes very soon. :-)

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Lisa C. Greene is an author, public speaker, certified parent coach, and the mother of two children with cystic fibrosis. With Foster Cline MD, Lisa co-authored the award winning Love and Logic® book “Parenting Children with Health Issues: Essential Tools, Tips and Tactics for Raising Kids with Chronic Illness, Medical Conditions and Special Healthcare Needs.” Lisa donates proceeds from her writing to help in the fight for a cure for cystic fibrosis. For more information, see www.parentingchildrenwithhealthissues.com

Back to School Days with Special Medical Needs: Tips for Good Communication with Teachers and School Staff

Communicating well is a critical skill that many of us simply weren't born with. The good news is that communication skills can be easily learned.

When a child has special medical needs, effective communication skills are especially important. Here are some tips for starting the school year out right for your child and teachers alike.

1. Communicate upfront about your child's needs. In the first two blogs in our "Back to School Days" series, we discussed how to initiate health care plans, 504 Plans and IEPs. Before school starts, initiate a discussion about your child's needs with school staff. Be sure to document everything in writing, especially agreements that are made.

2. Request, don't demand. Some people go into a meeting with school staff with a long list of demands and an attitude that says, "Do it or else." We call this the Drill Sergeant approach. The approach you take will set the tone for both the current meeting and perhaps your relationship with the school for several years.

There is an art to being an effective advocate for your child; it takes a bit of finesse. You want to come through as firm but not demanding; friendly and cooperative but not a pushover; and as a team player. It can be a fine line at times.

It helps me to remember to "be assertive but not aggressive" and there's a big difference. Being aggressive is telling others what they have to do and is seldom effective. Being assertive is telling others what we need.

Aggressive: You need to move my kid away from that other kid who is coughing.
Assertive: I would appreciate it if you could move my son away from the kid who is coughing so he doesn’t get sick.

Human nature says that when one demands, the other resists so aggression and demands don’t usually get us very far. However, sharing what we need and phrasing it politely will generally result in cooperation. Note that this is true with our kids and spouses, too.

Most teachers are eager to do what's right for your child within reason when asked nicely. Ask, discuss, negotiate and problem-solve.

3. Be aware of how your parenting style will affect your child at school. The relationship between children, parents, teachers and school administrators is a very dynamic one. If you are hovering over your child like a turbo charged helicopter at school, it will affect your reputation and relationships with staff. This may also "trickle down" to your child in the classroom both with teachers and the other kids.

As unfair as it seems, teachers do form opinions about their students and, like all human beings, prefer some over others. Parents are definitely a part of this equation. It's human nature to go the extra mile for someone that you like. So, be likable.

4. Be a problem-solver, not a finger pointer. When things go wrong, it's easy to get upset and blame teachers and classmates instead of looking at the role our child might have played in causing the problem. Remember, there are always two sides to every story.

When there is a problem at school, parents are best advised to use the very same collaborative problem solving skills as they use with their kids as a Consultant Parent. Foster Cline, MD gives us the attitudes for Consultant Parents:

• Use Choices, not Demands
• Are Sad for, Not Mad at
• Are Curious, not Blaming
• Are Empathetic, not Excusing
• Are Consequential, not Punitive
• Are Caring, but not Rescuing

Read more about parenting styles in our booklet called "Parenting Children with Health Issues and Other Special Needs: Love and Logic Essentials for Raising Happier, Healthy Kids" by Cline and Greene. Available at www.amazon.com and www.loveandlogic.com.

With a handful of effective communication skills, parents and teachers can be excellent partners in doing what is best for our children. This goes for the parent/ doctor relationship as well.

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information, visit www.ParentingChildrenWithHealthIssues.com

Back to School Days with Special Medical Needs: Getting Your Child's Needs Met with IEP and 504 Plans

This blog is the second in our "Back to School Daze" series and is a continuation of our discussion about effective communication with teachers and school staff. This week we'll look at IEP and 504 Plans which are federal regulations put in place to guarantee an education for children with special needs (which includes medical issues).

IEP and 504 Plans are two separate plans with distinct requirements although there can be some overlap between the two. Each plan creates a legal document which outlines your child's specific needs and accommodations while at school. Parents and schools generally work together to create the plan for the child.

Although the subject is complex and confusing, it's important for you to be aware of the basics. Taking medication at school, meeting dietary requirements, attendance, schoolwork, the ability to perform at grade level, exceptions to grading policies, and perhaps even safety issues (like accommodations for allergies), may all be affected by your awareness of your child's rights.

Busy, budget-strapped school systems and administrators may not always have your child's best interests as a priority. It's not that they don't care- of course they do. It's just a matter of competing priorities, special interests, and needs. Parents need to be proactive advocates for their children and it starts with learning about these important issues. Your child's best interests are in your hands. And as you set a good example of standing up for your child's needs, you'll be teaching your child how to look out for him or herself as well.

Schools may or may not initiate the process of putting a plan in place. Some schools may even discourage you for various reasons. With 1000's of schools across America, there is a wide range of good, bad and ugly. Unfortunately, there are plenty of lawsuits against schools that refuse to (or simply can't) meet the requirements of these federal regulations. Having a basic understanding of these plans will help give you the power and tools to ensure that your child's physical and educational needs are met at school.

Federal regulations have been set up to prevent discrimination against individuals with disabilities. As a part of these regulations, both IEP and 504 Plans ensure that all children are granted an opportunity to receive an education regardless of disability or physical limitation. There are subtle but very important differences between the two types of plans. Deciding which one is right for your child is essential and should be discussed with experts if you are unsure. A primary criteria is whether or not your child needs specialized education. If this is the case, it is most likely that you would need an Individualized Educational Plan (IEP).

IEP Basics: IEPs speak specifically to the rights of a "Free Appropriate Public Education (FAPE)" and are derived from the Individuals with Disabilities Education Act (IDEA). The Individualized Educational Plan (IEP) was developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services.

"Special education" under IDEA does not mean placement into a special education classroom. It means the child has been identified as having unique educational needs related to his or her disability and is entitled to an IEP to meet these needs. To be eligible for special education services, it is necessary to prove that the child has a disability that interferes with his or her education and performance. Children who receive special education services under the IDEA are automatically protected under Section 504.

Not all students who have disabilities require specialized instruction. For students with disabilities who do not require specialized instruction but need the assurance that they will receive equal access to public education and services, a document called a 504 Plan is created to outline their specific requirements.
504 Plan Basics: 504 Plans are derived from Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA). Section 504 is a civil rights law that applies to all institutions receiving public funds including public schools, libraries, etc. and is designed to guarantee that people with disabilities will not be discriminated against.

Under Section 504, the child with a disability may receive accommodations and modifications that are not available to children who are not disabled. Examples of common 504 Plan accommodations include preferential seating, modified homework and testing schedules, and assistive technology (like recording devices for note-taking, special keyboards for physical disabilities, etc.).

Some state laws require a health care plan to be in place for all students who require medication and/or treatment while in school attendance. This could be a 504 Plan, IEP, or another document called an Individualized Health Care Plan (IHCP or IHP). IHCP's give detailed information about the medical services your child will require at school. See last week's blog for more information on IHCP's.

IEP or 504 Plan or IHCP: Which One? Very generally speaking, the question of whether you need an IEP or 504 Plan is that of special accommodation. Does your child need something different than what is already available at the school? If there are already systems in place to meet your child's healthcare needs, then an IHCP might be all you need. Most schools have systems in place to deal with taking pills, food allergies, asthma and other more common health issues. But if your child needs special accommodations, then an IEP or 504 Plan is probably needed. And the primary distinction between these two plans is the need for specialized instruction. If your child needs specialized instruction, then the IEP provides for this.

Of course there are exceptions and caveats to all of this and here's an important one: If your child is experiencing learning difficulties due to excessive absences from illness, he or she might qualify for an IEP under the "Other Health Impairments" section of the Individuals with Disabilities Education Act (IDEA).

"Other Health Impairment" is one of the 14 categories of disability listed in the IDEA. Under this section, a child who has an “other health impairment” is likely to be eligible for special services to help the child address his or her special educational needs resulting from the disability. Children with cystic fibrosis, cancer, or other medical conditions that require extended hospital stays or periods of disability may fall under this category and be eligible for private tutoring.

There is often confusion when it comes to private schools and their ability to serve children’s needs in this area. It is important to remember that IEP and 504 Plans are only guaranteed for children at schools that receive government funds and/or services. It would be vital to speak in depth to administration of any private school you are interested in your child attending to see whether or not this is the case for them and how, exactly, these matters are handled.

Where to Start? If your child has a disability or chronic health condition and may have need of accommodations during the school year, the place to start is to request a meeting in writing with the teacher, copied to anyone else you feel is appropriate (e.g. the nurse, principal.) This needs to be formally written, not a quick ‘note’ sent in your child’s folder or email. This starts a ‘clock’ on a timeline the school must work within to ensure the child’s needs are handled in a timely manner.

Outline your main concerns in the letter and state you are requesting a team meeting to discuss the need for an IEP or 504 plan for your child. They are required to respond to you and schedule a meeting within a short time. Your child’s medical provider can also help a great deal by providing a letter stipulating what your child’s needs are. If your child’s care team or hospital has access to one, medical social workers are wonderful resources as well.

I did not need a 504 Plan for my own two children with cystic fibrosis until this year. My children's needs have always been met by providing the school with a letter that served as a health care plan (the subject of last week's blog). But as my oldest goes into middle school, it's time to take the steps to ensure that we have a plan in place to deal with the complexities his illness might bring especially as he moves into high school.

So, now that you have a basic understanding of IEP and 504 Plans, I hope you'll join me next week for a blog on how to present and discuss these plans with your school administrators in ways that create a positive, collaborative relationship rather than an adversarial one.

There are no absolute guarantees that what you put in your plan will be met. Designing a well-written plan that is likely to be accepted by the school and will meet your child's needs now and into the future is an art form that requires patience, knowledge, and good communication skills. Take the time learn about this now rather than waiting until there's a problem at school. Your child's future is at stake.

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information, visit www.ParentingChildrenWithHealthIssues.com

This information is not meant to replace professional medical, legal, or mental health care.

References:
Conners, S., M. Ed (2002), Section 504, the Americans with Disabilities Act (ADA)
vs. The Individuals with Disabilities Education Act (IDEA): What is the Difference,
Online at: http://www.nldline.com/iep_vs_504.htm

Holly, Tips for Completing a 504 Plan, www.TipsForCFParents.com

Logsdon, A. (20XX), Top 5 Comparative Points Between Section 504 and IDEA,
Online at: http://learningdisabilities.about.com/od/disabilitylaws/tp/504IDEAdifferen.htm

University of WA (2002), What is the difference between an IEP and a 504 Plan?,
Online at: http://www.washington.edu/doit/Stem/articles?52

US Dept of Education, Office for Civil Rights,
http://www2.ed.gov/about/offices/list/ocr/504faq.html

Back to School Days with Special Medical Needs: Start the School Year on Track with a Parent-Teacher Meeting

This blog series will get you started on the right "back to school" track if you have a child with health issues starting with:

Start the School Year on Track with a Parent-Teacher Meeting

It's that time of year again- back to school. And with it comes an air of excitement, anticipation and, for parents, some stress and worry. "Will my child like his or her teachers?" "Will he or she get along with the other kids?" "Will my child do well this year?" And, for those of us with special medical needs, "How will I ensure that my child's needs are taken care of?"

Of course, as loving parents, we want everything to go "just right". But, as we all know, the reality is that things don't always work out the way we'd like. Kids get teased and left out, teachers aren't perfect, children don't always go to the head of the class, medications get forgotten, and there are plenty of things that can get in the way of "the perfect school year." And of course, there's always head lice to keep us on our toes. (Ewww!)

The good news is that each of these "experiences" can provide our child, and us, with a new opportunity to learn and grow. And, with a bit of thoughtful planning, we can increase the odds that the year will go well and our child's special needs will be met.

Let's start with effective communication. This is the most important thing you can do to help your child get started on the right track. This includes communicating with the teachers, school staff and administration, your child and your child's peers. This first blog will deal with communicating with your child's teachers.

About a week or two before school starts, request a meeting with your child's teacher(s). The subject matter of this meeting should be to discuss and document your child’s medical requirements and the process for getting those needs met at school. You’ll also want to be prepared to educate about the basics of your child's medical condition.

Depending on your child’s needs, this initial conversation might result in starting the process of creating an IEP or 504 Plan (which we’ll discuss in next week’s blog) especially if this is your child’s first year at this school. This conversation should take place every year with your new teacher even if you have an IEP or 504 Plan in place.

Be aware that if your child needs to take any medication at school including over-the-counter drugs, a medical authorization form for each medication needs to be signed by your doctor and turned in by the first day of school. Be sure to check on your school’s medication policies as far as labeling, location, and how the meds will be given to your child (by the teacher? Nurse? Office staff?).

Providing information in writing is essential. Even if you are unable to schedule a face-to-face meeting, make sure that you provide written documentation about your child's needs well before school starts. Teachers and staff are very busy during the first two weeks of school. They are less likely to pay close attention to anything you hand them when they have thirty kids running around the classroom on the first day of school.

I provide two basic documents to my kids' teachers a week before school. One is a letter that explains how the diagnosis of cystic fibrosis affects my children and what their needs are. Most illnesses have a wide range of symptoms and medical requirements and it helps the teacher to know what the particulars are for my child. The "teacher letter" is written in a way that helps the teacher understand each need plus it creates a partnership between me, the teacher and my child.

The other document I provide is a general pamphlet about my child's medical condition. Most medical conditions have something like this through a non-profit organization that supports the illness. If a pamphlet is not available, use a printed explanation from a trusted source like the National Institutes of Health (NIH). The point is to give the teacher, staff, and school nurse some basic information about your child's medical condition. You can view samples of the documents I use at the following link. Feel free to copy and modify as you see fit.

http://www.happyheartfamilies.com/SchoolIssues.html

Many schools require a more formalized document called an Individualized Health Care Plan (IHCP or IHP). Your child's IHCP should include things like the medical services your child should receive at school including medication, when, where, how the services will be provided and by whom, and an emergency response plan that details possible emergencies and what to do. The IHCP should be shared with your teachers, kept in your child's school record, and attached to an IEP or 504 Plan if there is one in place (more on that next week). Schools often have their own version of an IHCP that can be filled out so be sure to ask. If not, samples of health care plans can be found online including ones written for specific medical conditions like diabetes, asthma, allergies, etc.

So, that's the first step to having a good school year- making sure that your child's school administrators and teachers are fully aware of your child's medical condition, the individual aspects of it that affect your child, and what your child will need at school.

It's also a good idea to provide this information to all staff who will come in contact with your child each day. Don't forget PE teachers, coaches, music teachers, special classes and "yard duties" (as my kids call the people who help on the playground).

Open, honest, thoughtful communication done upfront, before problems occur, will help ensure that your child will be understood, properly cared for, and safe throughout the year.

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Lisa C. Greene is the mother of two children with cystic fibrosis, a certified parent coach, parenting educator, and public speaker. She is also the co-author with Foster Cline, MD of the award-winning Love and Logic® book “Parenting Children with Health Issues.” For more information, visit www.ParentingChildrenWithHealthIssues.com

When Two Stories Collide

As I travel around the country, I get to meet some really interesting and wonderful people. I did a talk for the San Diego Hemophilia Association and met a man with an interesting point of view about his illness.

I noticed him when we were waiting in line to register. He was a tall, older, African-American man with a certain grace about him despite a limp and a cane. He was dressed in lots of clothes including an overcoat; uncharacteristic for mild San Diego. But it was cold and rainy that day. He had a wide, toothy smile that lit up his whole face as he heartily greeted the volunteers working the registration table.

Sitting down to eat some breakfast, he asked if he could join my daughter and I. "Of course!" I reply. After the typical pleasantries, I asked him, "So what brings you here to this conference?" "I have hemophilia and I am finally coming out of denial." "Oh?" I ask, "What do you mean?"

And he proceeded to tell me about how he'd been meaning to come to this conference for years but just couldn't face the fact that he had hemophilia. Finally, due to bad health, he couldn't ignore it any longer and had decided to get support. He was tired of doing it alone.

"You see," he explained, "I am one of seven children. And I tried to keep up with all of my brothers and sisters. I didn't want them to see me as weak or sick so I just basically shoved the fact that I have hemophilia into the back of my mind. I did the bare minimum to take care of myself but I've lived a life that now I am paying for. I hope others don't make the same mistakes."

I explained to him that I was there to talk with parents about raising children with hemophilia and I asked if he had any wisdom to share, if there was anything he wished his parents had done differently.

"I wish they would have taught me and my siblings about my hemophilia, talked about it openly within the family. The whole family was in denial. It's like my hemophilia didn't exist. So I didn't learn how to take care of myself and I didn't learn how to cope with it well. And now I am paying the price. My life is kind of a mess right now. I am searching for answers and meaning."

I encouraged him that sometimes we just don't know where the turns in the road of life will take us and that by telling his story, he will help others and perhaps find meaning himself. Because we are our stories and we all have a story to tell. He seemed stunned as though the thought hadn't occurred to him.

A tall black man and a short white gal- two hearts and two stories connecting for a moment in time. I hope that I made a difference in his life like he did in mine.