March 9, 2016

What to say to Friend whose Child Faces Surgery

What to say to friend whose child faces surgery

What to say to friend whose child faces surgery –  I wrote several months ago about my dear friend who found out her daughter would be born with a congenital heart defect. Going through (at the time) a frightening prenatal diagnosis of our own and then a subsequent open-heart surgery, I can relate to some of what my friend is feeling now and about to go through.

If you are struggling to find the right words to say to parent whose child is facing surgery or is about to start a tough medical journey with their child, I hope you see something in this letter that your loved one will take comfort in.

Dear Friend,

I want you to know that my heart hurts with yours.

I want you to know that I’m not here to say it will be okay- because there is nothing okay about seeing your sweet baby endure this kind of trial. But, I pray you find peace in the middle of these unthinkable circumstances.

I’m not going to say that God gives children with special medical needs to special parents—because I don’t believe that’s true. But I can’t imagine a more special couple than you and your husband to raise your sweet girl.

I’m not going to tell you any phrase that starts in, “At least it’s not…” Or “It could be worse,” because these chapters in her story, your story, are painful. Period. The path to healing can only begin when we recognize there is something to be healed.

I’m not going to say, “Let me know how I can help,” instead I will just do whatever it is I know you need help with.

I’m not going to say, “God only gives you what you can handle,” instead, I believe that God is the only way we are able to cope through the inconceivable events life sometimes brings.

I’m not going to tell you, “I know how you feel.” Even though you will sit in the same Cardiac Intensive Care Unit as I did, your family’s journey, your feelings, are uniquely yours.

Here is what I will tell you. What your daughter and your family is about to go through is not fair. At times it will be tear-stained and gut-wrenching.

But even in this unimaginable journey you are about to begin, there will be good, too.

Your daughter may just teach you more in her first year of life than you’ve learned in your first 30. Through this, I believe you will become more compassionate and understanding. If you let it, your world-view will become bigger. You will worry less and embrace life with more vigor. Through this, she will become stronger and so will you.

When you walk out of those hospital doors, when the smell of the ICU has finally left your clothes, this chapter, although closed, will never actually end.

The struggle you all are about to go through will infiltrate every page of your story.

Because if you let it, the pain you feel now, will one day make the colors around you seem brighter, it will make work seem less daunting and will undoubtedly expand the immense amount of love that is already in your hearts.

 

 

August 19, 2015

An Open Letter to My Son’s Heart Surgeon (Open Heart Surgery)

Dear Dr. Nigro,

I didn’t want to meet you. In fact, I was angry on the two-and-a-half hour drive to your office. See, I was told that my son’s heart defect would most likely not require open heart surgery. Then, all of a sudden, it felt like a bomb went off and the explosion sent my husband and I to your office a few days later.

I came prepared. The journalist in me researched articles, stalked heart groups on Facebook; I was armed with a pen and notebook. I was not going to let you cut open my son’s chest just because you were the closest pediatric heart surgeon.

I asked you this, “Have you ever lost a baby from this heart surgery?” You looked down and said, “Yes.” There was one little girl, one among thousands, who also had Down syndrome, who went home and died in her sleep. Even though the loss was more than a decade ago, I could tell it still pained your heart. That’s when I knew you were the one.

On the day of surgery, you saw I was emotional, you gave me a tissue and assured me it would be okay. You were more than confident. This is what you do. Day in and day out you save our children’s lives.

open-heart surgery, down syndrome, pictures
Hours after surgery
Open Heart Surgery, Day 1, down syndrome, pictures
Anderson, Post-Op Day 1
After Open Heart Surgery
8 weeks after open heart surgery, A put on 4 pounds!

If my son were born in the 80’s, his life expectancy would have been around 25 years old. Now, it is in the 60’s. This is in large part because of people like you.

I know you went to four years of undergrad, four years of medical school, multiple internships, residencies and a fellowship. You spent about two decades of your life sacrificing and learning so that you would know how to perform near miracles.

I saw you come in both Saturday and Sunday with your khaki pants and your wind-blown hair. I know you were trying to have a piece of normalcy but that you had to check on all of your patients before you could try to enjoy yourself outside of the hospital’s 5th floor. I know your wife sees very little of you. I know that you have dedicated your life to save others.

For however broken our medical system seems to be, you are the bright spot. You spend the majority of your life surrounded by either the walls of the OR or the CICU’s because of a calling, a calling to change lives and enhance futures.

When we are kids, we are taught that super heroes come with big muscles and capes. As an adult I’ve realized they often times come in surgical caps and scrubs.

Thank you for your enormous dedication. Thank you for all of those years you sacrificed perfecting your craft. Thank you for making my son’s broken heart whole. Thank you for making your life about making his better.

“God’s primary instrument in caring for his planet and the people on it is other people…”- Adam Hamilton, Making Sense of the Bible

Dr. John Nigro, Pediatric Heart Surgeon, Open Heart Surgery, Down syndrome
Dr. John Nigro, Photo Credit: Phoenix Children’s Hospital

*I also want to say thank you to the entire team at Phoenix Children’s Hospital. To Anderson’s anesthesiologist, thank you for calming my fears right before surgery. To the Intensivists, thank you. To the entire cardiac ICU nursing staff, especially Jen, thank you so much. To Dr. Nigro’s wife, thank you for your sacrifice.

 

July 14, 2015

Stronger Than We Know (Open Heart Surgery)

Down syndrome, CHD, Open-Heart Surgery
Anderson’s 6 month picture, 2 weeks after Open Heart Surgery 

open heart surgery, down syndrome baby

I hate clichés. Maybe it’s because my college professors told me to leave them out of news pieces or maybe it’s because I think too much, but I’ve really grown to despise them over the last year.

When you get a Down syndrome diagnosis, you hear a lot of clichés from a lot of well-intentioned people. I suspect anytime someone gets life-changing news, clichés like: “God doesn’t give you more than you can handle,” (which I find to be incredibly off-based on multiple levels) start rolling in.

But I have to admit, there is one cliché that even my over-analytical mind has found to be spot on: You are stronger than you know.

Of course, whenever someone says this to you, you may be in the weakest of places. If you are like me, strong is something you thought you were before you ever experienced a true hardship. But after going through multiple crises last year, with the help of: Faith, family and friends, I became a better version of myself-I was stronger than I knew.

Anderson’s therapists continually say the same thing about him. He is so motivated. For having a moderate size VSD, for having low muscle-tone and being a bit underweight…he was meeting milestones on the typical chart. Which seemed miraculous in itself.

Hours after Anderson’s open heart surgery, I asked the nurse how big his VSD actually was. The surgeon came into tell us himself. What we thought was a 4-millimeter hole, was actually 9 millimeters- more than DOUBLE the estimated size. AND- there wasn’t just one hole, there were two. The second hole was 4 millimeters wide.

Which means our sweet boy was always happy, always moving and always learning new things with a heart that was failing him. He is stronger than we know.

When the books say that our boy may have problems learning or communicating; we will remember he is stronger than we know. If a future school thinks his Down syndrome diagnosis means he can’t participate with other kids, we will tell them: he is stronger than we know. When people tell us to lower our expectations for his future we will tell them: he is stronger than you know.

To the new mom out there who was just told that the baby in your arms or in your tummy has an extra chromosome, who may have had a uneducated doctor (like I did) who told you that your little one will likely never amount to much, I’m here to tell you a cliché that I know to be true: You are both stronger than you know.

He gives strength to the weary and increases the power of the weak.- Isaiah 40:29

Open Heart Surgery, Down syndrome
Post-Op Day 1