CHD Awareness Week: From the Heart!

(I am posting this on both of my blogs in the hopes to reach many readers because of the importance of the topic.  I apologize if you are subscribed to both and get this twice.)

Many may not know this, but this week is incredibly important.  February 7-14th is Congenital Heart Defect Awareness Week!  Plenty of information circulates to prepare parents for down syndrome, cleft lip, diseases caused by not vaccinating, and autism, but are you aware that nearly 1 out of every 100 babies is born with a heart defect.  Many of these defects are minimal and may even correct themselves, but there are also many that are life-threatening.  With advanced prenatal care, most of these defects can be caught in an ultrasound, before the baby is even born.  However, in our daughter’s case, they missed it many times.  In fact, after repeated ultrasounds because of an inability to see one side of the heart, they wrote 4 chambers down, despite the fact that she only had half a heart.

My daughter was born with Hypoplastic Left Heart Syndrome.  This means the left chambers of her heart were small and non-functioning.  She was not even diagnosed until day 12, and she had her first reconstructive open-heart surgery the next day.  Going from being a regular parent to one caught in a whirlwind in the cardiac intensive care unit (CICU) is overwhelming.  Learning about the complex nature of this defect, and the special needs that a child with this defect has is terrifying.  I felt shock, and I was always worried, watching each beautiful breath she took with gratitude.  I learned how to read the machines and what her sat requirements were.  My husband and I created medication logs and we documented her life for months.  We became caregiving parents.  Between this beautiful new child with a host of complications and a mentally ill child, we were exhausted, but we survived, and our little girl is 9 now.  She has survived three surgeries, and each year, I speak about her condition to alert people to this common defect.  1/100 is a high number in my opinion.  Much higher than the current statistics for other common defects like down syndrome.

Knowledge is power, and I can say if you feel something may be wrong with your child, be adamant in getting a doctor to listen.  It took 6 visits to get our doctors to finally admit us.  My daughter was diagnosed past the date where most will die without treatment.  She was in the lucky 5% that survive past 10 days.  This is incredible to me.  The most difficult aspect of her condition that I live with each day is that the future is so cloudy.  We have been told her heart will eventually wear out as it is working twice as hard, and she has had so much work done, she will require a transplant at some point.  This is a fact, but one that I try to forget.  I can often pretend she has no problems as she acts like a typical 9 year old with a bit of an attitude at the moment.  It is when the threat of a cold looms over us, or when she wants to do gymnastics moves around the house that I begin to panic.  It is when she gets overheated so quickly in the summer that I want to squeeze her tight and never let go.  I know her life has been borrowed by skilled doctors, and I fear what the future holds.  This is why I want to bring awareness about the importance of having knowledge about heart defects.  We nearly lost our chance to know this incredibly intelligent little girl, and I hope our story can help another family get that same chance.


The Elephant in the Caregiving Room!

This post is going to be incredibly personal as I discuss something about caregiving that is often left out of the equation.  The fact is, people tend to portray the heroism in caregiving or the toll it takes on caregivers.  Yet, there is a conflict that arises and is never discussed, at least not that I have seen.  We all know caregivers lose a piece of their life, they give a lot of time to care for loved ones, and they lose privacy, but there is something that is lost that goes much deeper than an afternoon out.

My parents have cared for my grandparents for 13 years.  After my grandma passed last year, they continued to care for my grandpa.  Recently, they took my Aunt Mona, who is dying from cancer, in.  They have sacrificed all privacy.  My mom has been a caregiver full-time instead of working, and now that my father is unemployed, he has been a caregiver full-time as well.  They spend their life organizing medications, doctor appointments, wheelchairs, nurse aids, oxygen tanks, bathing, feeding proper foods, and any other aspect that fills the corners of each day.  This is something people tend to associate with caregivers, but unless you are the caregiver, or you truly see what these people do, you cannot possibly understand the effects that go beyond this.

I have lost a huge part of my parents, and they have lost themselves, and their relationship.  I used to be able to call my mom and go to lunch with her when I had a day off and my son was in school.  We could go shopping, have mother daughter time.  I could hang out with them and watch movies.  We could meet for dinners.  They used to be able to go to dinner or a movie as a couple when they wanted.  They could schedule a vacation.  Instead, they have learned to love as partners in caregiving, not partners in the typical, marital sense of the word.  They do not have the same relationship because the caregiving has become their world.  As I approach graduation, I had to worry about the fact that I only have 6 tickets for family, and they do not have anyone to watch grandpa and Aunt Mona.  They do not feel like the extended family will take the vacation time to help.  There are a few siblings that could not because they are not able to financially, but even those who could, would consider this a burden and would most likely not make this work.

The problem is, I feel guilty because I do not want my grandpa or Aunt Mona there.  I know that if they are there, my parents will be distracted.  My grandpa has Alzheimer’s and when he is away from home, he gets anxious.  If he gets anxious, my dad will be worried about getting him home, and my mom will feel like she is rushed to leave.  The whole time will be spent worrying about them, and I want it to be a day that I can get the degrees I worked 6 years for with my parents who should be able to enjoy watching their daughter achieve something.  I feel like I should not feel this way because my parents can’t help it, but then I feel like I should be able to feel angry because my parents should have a more supportive family network.  This makes me angry.  Then, I feel conflicted.  If I feel this way, I can’t imagine how conflicted my parents feel.

When I see my cousin post pictures of her taking her parents on a train ride through the mountains and enjoying a small vacation with them, or pictures of happy, stress free dinners, I get angry.  These people get to live their life, and they do not have any realization that my parents do not get this vacation, and I can’t invite them on a small vacation.  We do not get stress free dinners together, and we do not get to have anything remotely like they do.  Their lives are full of freedom while my parents are restricted by this role of caregiving.

Now, I do not want people to think I devalue caregiving.  If anything, this makes me respect caregivers even more.  What I want to do is make people understand the extensive effects of caregiving,  Relationships suffer, freedom is lost, and feelings become turbulent.  Feelings of duty and expectation mix with anger and guilt.  Caregivers, and their close family members who are actually involved, tend to live with guilt when they feel upset or angry over the abandonment of the rest of the family, and the overwhelming nature of caregiving.  Why should someone who gives of themselves daily because they care for another human being feel like they cannot share their feelings?  Why should they feel as though they need to keep plugging along without days of grief?  Why can they not be allowed to express frustration without feeling guilty?  It is because society expects them to be troopers.  We expect them to give of themselves without a reprieve and to be thankful because they are impacting another life.  Yes, caregivers may be thankful for the time they spend with their loved ones and knowing they are getting the right care, but they are also overwhelmed, exhausted, and they deserve to express their emotions without judgement.

These feelings are normal.  It is a lifestyle change that seriously affects every aspect of a caregiver’s life, and they have the right to be overwhelmed, and they should not have to feel shame or guilt when they feel this way.  It is also normal to feel jealousy, anger, and resentment against the rest of the family as they move on with their lives, leaving the caregivers behind in the haze.  This is what people need to discuss because otherwise, more families become divided, and more caregivers will carry unnecessary guilt.  It also needs to bring light to the inequality in families when it comes to caregiving because so many are left without a family network to rely on, and this breeds feelings of extreme anger and resentment.  I can honestly say that I am still working through this as I deal with anger towards the rest of our family.  I see people who get to live their life, and I desperately want more natural time with my parents.  This is the elephant in the caregiving room.  This is what is no one want to talk about, but it is there, causing tension and pain in caregiver homes everywhere.  This issue needs to be faced head on, and dealt with because caregiving is becoming more prevalent in our society, and the baby boomers are aging.  It is time to make a change instead of avoiding the issue, and the first step is to recognize this problem.

Advocacy Blog Series: Parents as Advocates

I think it is crucial to discuss the aspect of advocacy that blends into the role of parenting.  When a child is born, the parent is automatically the advocate unless the child is a ward of the state or another family member.  There is an instant responsibility that goes deeper than basic care and devotion.  Every time that child has a problem, is ill, needs supportive services in school, requires a legal guardian for sports, or anything else, the parent falls into the role and becomes the child’s advocate.  Some parents take to this quite easily, and if they are lucky, they will make it through the 18 years of guardianship without a hiccup.  However, it is likely that something will happen.  The child will probably be hospitalized at some point, they may require counseling for depression or more severe mental illnesses, they may be a victim of bullying or abuse, and they may have a physical illness.  It is almost guaranteed that a parent will face at least one serious issue where they must advocate for their child.

What does this mean?  It means you must be willing to be informed, to question, to learn, research, have sleepless nights, make tough decisions, and do whatever else may be necessary to help your child get the help they need.  The system, whether educational, medical, state, or judicial, should be there to support you and your child as well, but things can go wrong.  Even the people working in the system may make misinformed decisions, stereotypical assumptions, or mistakes.  This is why it is so important for parents to put the extra effort in.  here are a few examples:

When my son struggled with mental health issues that threatened the safety of my family, we had to research his conditions, understand the medications, seek residential care, and fight the doctor who attempted to place him in a group home where he would have ended up in the state system.  It was not easy.  In fact, most of my days were spent researching, making phone calls, or sending emails.  The one truly important lesson I took away from this situation was the need to document everything.  When the doctor was acting unethically, I began to copy very detailed emails about his plans and our concerns to people in the government, at the top of the insurance company, and advocacy agencies.  This had a major impact, all info was documented, and he was fired.  We were able to get my son into a facility that was able to help him.

When my daughter was diagnosed with Hypoplastic Left Heart Syndrome, we were shocked at first.  Thankfully, I had an incredible woman at the hospital who was an advocate for me as I tried to get my daughter on SSI.  It was a nightmare, and I had suffered abuse over the phone from my local SSI representative.  I was not strong enough at this point to fight, but this woman helped me, she fought for me, and was a perfect example of why advocacy is important.  After I grew stronger, and did some research, my life became about doing everything I could to care for my daughter.  My husband and I were proactive, we kept medication logs, medical records, notes, and anything we could to help track her care between surgeries.  This was another example of the need for documentation, but also the realization that outside help from an advocate can be incredibly helpful.

Finally, in the educational arena, we have had to work very closely with my son’s schools to accommodate his disabilities.  He has had an Individualized Education Program (IEP) since he was in kindergarten, and it was very useful.  For a parent, it can be confusing at first, but there are a few things you can do to help.  First, read the school’s handbook, next, research IEPs, and look at specific state regulations.  Pay attention to your child and how he/she learns, responds, calms, or reacts at home.  Take notes on a regular basis about things that help and things that do not.  This is information you can supply in IEP meetings.  The more knowledgeable you are about the school system and what accommodations can be made, the better you can be at advocating for your child.  You also need to be open to recommendations.  If something doesn’t feel right, say no, but listen to reasoning first, and do not be afraid to ask questions.

These are only a few examples, but they truly express the ones that stand out to me as learning experiences.  Every parent will need to step into this role in some way, and some more than others.  Do not fault yourself for mistakes, or feel guilty when you miss something.  There are handbooks everywhere, but none that can truly guide you in your specific situation.  As an advocate, it often feels like the weight of the world is on your shoulders, but if you reach out for others, you may be surprised at who is there, and who has been through similar experiences.  Please feel free to share your experiences.