Keep Calm and Carry On...

When you are the parent of a child (or children) with special needs and/or health issues, you quickly learn that there are good days and bad days.  The good days are days when, if only for a moment, you get to forget.  You get to forget that things aren’t absolutely perfect, because to you, any day that doesn’t involve a doctor or an appointment or pain or worry IS perfect.

The bad days are days when you remember.  You remember every appointment, every needle stick, every illness, and every surgery, because every appointment, every needle stick, every illness, and every surgery reminds you of each and every one before it.  And you realize, again, that it will never be over.  There will always be more to come.

Yesterday was a bad day.  We met with a new hematologist.  This always means going over the medical history of the boys.  It involves opening up the binders and the journals that I like to keep closed.  If they stay closed, you see, it means that I’m not putting something in or taking something out – slicing open old wounds or creating new scars.  Yesterday, I had to do both.  After retelling their stories to a nurse, then to a hemophilia coordinator, then to a Fellow, and finally to the specialist (slice, slice, slice, SLICE), we learned that we would also be adding to our numerous psychological scars, because the boys needed to have extensive blood work done.

Henry went first.  Though he’s the younger one, he’s been through more.  He’s pretty familiar with the process.  He cried when the needle broke the skin, but quickly recovered as his mind drifted to the “prize box.”  He became a bit uneasy by the time they got to the sixth tube of blood, but he managed to sit still for all eight.

Jackson was next and on the verge of a nervous breakdown by the time he climbed onto my lap.  When they stuck him, I had to tighten my grip, because he flailed and screamed.  I whispered happy thoughts into his ear, but he ignored me.  My mom (Mimi was along for the trip, as always) made promises of McDonald’s and sleepovers, but he ignored her.  And then, Henry, the four year old seasoned veteran, approached us.  He put his hand on Jackson’s arm and said, “I know how you feel, Jackie.  I know it hurts really bad.  I know why you are crying.  That’s how I felt.”  Jackson turned to his brother, swallowing his tears and hiccupping.  He was comforted.  Henry stayed by Jackson’s side and Jackson looked at Henry while the rest of the eight tubes of blood were drawn from his little arm.  Even the nurses were in awe.

 The boys giggled and sang the entire way home.  After a two hour round trip, a three hour appointment, a million questions, two exams, and sixteen total tubes of blood between them, the only tears were those formed from laughing, as they made up songs about their butts.  They had recovered so quickly and I finally understood why.  The day, good or bad, had been normal for us.  It’s what we do.  My children know that better than I do. They’ve been having bad days their entire lives.  But I always encourage them to carry on and we sing and we laugh when it’s over.  If I keep trying to forget, if I keep trying to erase the “bad days,” I’ll end up erasing most of our memories.  And as hard as yesterday was, I never want to forget the connection between my sons that I was able to witness.  It was one of the most beautiful things I have ever seen.

I was not as perky as the boys were, last night.  I was mentally, physically, and emotionally exhausted.  I would have preferred a nice, quiet drive.  But, despite the pounding in my head from an impending migraine, I let the boys sing loudly and I enjoyed their giggles.  I didn’t tell them to be quiet.  The happy voices in the backseat helped me remember things.  I remembered how fortunate I am to have such fabulous children.  I was reminded of how blessed they are to have each other.  And I realized that maybe yesterday wasn’t such a bad day, after all.

Open Letter to President Barack Obama...

President Obama,

Allow me to introduce myself.  My name is Anna and I am a 33 year old mother of two.  I have two children with special needs, Jackson and Henry.  My boys and I share a genetic condition known as Noonan Syndrome.  Jackson (we like to call him, “Jack”) and Henry have multiple health issues and see many specialists, due to their NS.  As a result, I haven’t worked since Henry was born.  Living in this economy on one income, with mounting medical expenses and a large amount of credit card debt, places us at the low end of the middle class of which you frequently speak.  My husband and I are Catholic Democrats.  We voted for you in 2008 and we will vote for you again, this November.

There are some who think you have failed as a president.  There are some who doubt your abilities.  There are some who believe you do not know or want what is best for the United States.  I would like for them and for you to hear my voice:  They are wrong.

 In case you need some validation and in case those against you need proof, I am writing this letter to tell you, specifically, how you helped and consequently saved my family.  I should mention that you have had many wonderful accomplishments during your presidency.  You saved the automobile industry, you prevented a financial collapse, and you eliminated Osama Bin Laden.  However, those are things that benefited America as a whole.  I want to tell you what you have done for me.

Let us begin with economics, since that is the topic on everyone’s lips.  In 2008, when Jack was already being treated for multiple health issues and Henry was born prematurely, with a heart defect (which led to the boys' later diagnosis of NS), I knew I would no longer be working.  To save our family, we began adding to our credit card debt.  It was easy.  We were able to extend our credit limits, take new cards, and do whatever we needed to do to take care of our boys.  The credit card companies were very willing to give and give, so we took and took.  People may judge that.  However, when a doctor tells you that your child needs surgery and that he can’t perform it without a prepayment, you hand over your card without blinking an eye.  This happened to us multiple times.  It wasn’t until early 2009 that we realized that we were in a downward spiral.  The card companies were raising our rates at their leisure and payday didn’t always coincide with the due dates.  And then, as if by a miracle, you passed The Credit CARD Act of 2009.  The companies seemed to respond overnight.  Following the new regulations, they began to lock in our rates, give us more than two weeks to pay our bill, and allowed us to cancel our cards.  Before the Act, we were not seeing any decrease in our account balances.  It seemed that our payments only paid fees and interest.  Because of your bill, we began seeing a change.  Since 2010, we have been able to eliminate almost 40% of our credit card debt.  My family is in better shape, financially, than we were in 2008, because of you.  For the first time in three years, we see a light at the end of the tunnel.  And it is shining brightly.

On October 28, 2009, ironically on the one year anniversary of the day that a blood test confirmed my children's diagnosis of Noonan Syndrome, you signed the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act into law.  By doing so, you expanded the 1969 United States federal hate crime law to include crimes motivated by a victim's actual or perceived gender, sexual orientation, gender identity, or DISABILITY.  Mr. President, you have protected my sons.  I will forever be in your debt for recognizing that bullies do exist and that they more often than not, prey on those who are different.  While that fact may never change, at least we can feel some comfort in knowing that those who commit hate crimes will be prosecuted to the fullest extent of the law.

 Finally, let express my gratitude for what you have done for my family that is, in my eyes, the most important:  The Patient Protection and Affordable Care Act.  Jack and Henry are the definition of preexisting conditions.  They have many.  They were born with a condition that will continue to affect their health, for as long as they live.  But thanks to you, not only will they never be refused health insurance, not only will they be able to be covered under their father and I until they are each 26 years old, but they will have access to affordable health care for as long as they live, no matter their income.  I will grow old knowing that my boys, who can never be cured of Noonan Syndrome, will always be able to receive the care that they need.  I will never have to fight insurance companies on their behalf, because you have already done it for me.

 So, for the Republicans, for the conservatives, for the cynics, for the doubters, for the Tea Partiers, for the Birthers, but especially for you, Mr. President:  Here was the story of a lower middle class family who has benefited from the presidency of Barack Obama.  I hope and pray that our country allows you the opportunity to serve us for four more years.  I believe in what you say.  I believe in what you do.  I believe, with all of my heart, that you know and want what is best for me, for my family, and for the United States of America.

Thank you, President Obama.  Thank you and may God bless you.

Sincerely,
Anna C. Corbin