What to say: 101.

This heart life is hard.

For real.

There are times where I just want to put my head in the sand and pretend I’m not living in it.

But, it’s for real.  And it’s hard as hell.

You can imagine what it has done to me – as a wife, as a mother, as a daughter, as a friend.

There are so many people around me trying to be everything they can be for me.

And for them…

It’s hard.

It’s hard as hell.

They don’t know what to do, what to say, how to do it, how to say it.

And sometimes…that’s ok.

Most of the time…that’s ok.

I don’t wish this on anyone.  As much as I love my boy and how richly I have been blessed because of him…I just can’t wish this journey on another soul.

Ever.

But, back to my people.

The people around me being all they can be for me.

It’s hard on them, too.  I know it is.

And the other people…the bystanders trying to be the shoulder to cry on, the one to say the right thing, the person to make it all better.

Thank you.

I was having dinner with my sister the other night.  After a schooner of Long Island Iced tea and glass of pinot grigio…

“Everybody in the club gettin’ tipsy”….

Sorry…just reliving my buzz.

…after a couple of drinks, I started to confide in my sister about how hurt I was about the friendships I’ve lost in all of this.  I also confided in her some of the hurtful things people have said to me in this journey.

She mulled it over – over her schooner of frosty beverage – and said something to me that I really took to heart.

Sometimes people don’t say the right thing because they don’t know what to say or how to say it.  And when that happens, they just decide not to make contact at all…thinking it’s what’s best.

That stuck with me.

So…dear friends…if you like…you may take it or leave it…the next part.  The part where I tell you what to say…or what not to say to a parent of a special needs/medically fragile…or Heart Mom…like me.

Please know…I TRULY understand that everything anyone ever says to me (ok…most of the time) comes from a place of love, goodness, kindness.  But, I’m just sharing some things that have dinged at my heart – regardless of the intention.

Remember..take it or leave it…

1. “We decided to not have anymore children because of what you and Craig are going through with Evan.”  – Our story is to spread awareness about congenital heart disease.  Our story is to show a testimony of faith.  Our story is not meant to be a form of birth control.  This statement leaves me feeling like my boy is a burden rather than a blessing.  It makes me feel like the person saying it feels pity for me.  Don’t pity me.  Don’t.  I may write about feeling sorry for myself and I may cry about how hard my life is…but there is nothing in my life that deems pity.  Nothing.

2. “Have faith.”  – Oy vay.  This is a toughie.  I think my faith story for Evan was decided the moment we made the choice to not terminate.  It was a choice to keep him.  It was.  I thought about termination.  But, then, decided to have faith that God would protect my boy and see us through whatever came about from our decision.  Faith is about taking those steps into the unknown and fully trusting that God has it all figured out when you may not.  Every day when I wake up, give heart meds to my boy, hook up his feeding pump, bathe his marred and scarred chest, see his crooked smile…I’m living in my faith.  When I say I’m scared about this life and about Evan’s future…it doesn’t mean I don’t have faith…it’s the exact opposite. It means I am knee deep in my faith…because I am trusting God with Evan’s life….what I fear is that my wants and my needs for my boy…to be here...in this life...and I know that may not be God’s plan for him.

3. “We all live in the unknown.”  This statement brought me comfort before I realized it was false.  Another heart mom brought it to light for me.  The unknown is this broad, wide, universal umbrella of the what ifs.  I don’t live in the what ifs for Evan.  I live in the facts.  I live in the statistics.  I live in the reality of his condition.  I live in the known of the next hospital stay that will happen.  I live in the known of the next surgery that will happen.  I live in the known of the startling figures of life expectancy and mortality.  These are the knowns that I live in.  The knows of our world are scary.  The what ifs..the unknown…well…those are scary, too.  But, what’s even worse are the hard facts about our child’s condition that we face everyday.  We all live in the unknown…yes..absolutely.  But, me…I live in the known.

4. “I don’t pray..but my thoughts are with you.”  This…I love.  It’s honest.  It’s true.  I’m being told that my son is on someone’s heart and his life has affected it somehow.  I have friends in all walks of faith – Muslim, Hindu, Buddhist, the Universe, Agnostic, Aethiest – and we all respect each other’s beliefs.  My faith story, my calling out to Jesus, my relationship with Him is mine alone…but I choose to share that part of who I am with others – friends and strangers.  I don’t expect others to believe what I believe…but if you have been lucky to witness my little miracle man…perhaps you’ll start to want to know the faith I try to live by. But, if you don’t believe the same as me….just a great big thank you for still loving me and my boy like he was your own…and keeping us in your thoughts.  And thank you for letting me share my story of faith with you…even though you may not truly understand it.

5. “I’m praying for you and your family.”  Perfect.  Simple.  Exactly what I need.

6. “You are so brave and strong.” I’m really, really, really not.  I’m just trying to survive the day…the moment.  I break down at least once a day…either in complete and utter fear for Evan or immense gratitude for Evan.  I don’t have a choice but to be strong for my family.  Craig has to work…I have to keep it together for Isabelle and Evan.  Their world has to be rock solid when there is so much of our world that is not.  I was given the responsibility to care for my children – raise them up right – and our story just happens to have a very special chapter in it that involves a very sick heart for my boy.  I’m scared all the time…but I can’t be in front of my littles.  I’m the Mama.  I “fix” it.  And that’s what I’ll be for them….just like you would be for yours.

7. “I could never do what you are doing.”  Please…don’t say this.  I’m not a super hero.  I’m just the mama.  See #6.

8.  “I don’t need a pulse ox or ask questions about the baby’s heart.  I’m having a healthy pregnancy.”  I did everything right, too. I did.  I didn’t drink, smoke, have caffeine.  My Evan is just one of those that drew the short straw.  Congenital heart defects affect 1 in 100 babies…despite what you may think…you are NOT immune.  And, you saying that YOU’RE pregnancy is healthy…makes me think I did something wrong in mine.  And I didn’t.  Many heart defects aren’t detected in utero.  Perfect APGAR scores don’t mean the heart isn’t sick.  Pink babies don’t necessarily mean healthy hearts. Ask for the pulse oximeter test.  Please.

9.  “Tell me what I can do to help.”  I wish I could tell you everything I need.  I wish I could say, “Please bring me a meal.  Please come over at 9:30 and entertain the kid so I can shower.  Please drop off Starbucks.  Please come sit with me and let’s chat (of course after you have gotten your flu shot, taken off your shoes, and washed your hands). Please _______.  Please ______.  Please ______.   There is so much I do need.  But, I either don’t know how to ask because I think I can do it all…and I honestly wish I could. So much of this life of being a mom to a medically complex child makes me feel incredibly inadequate…almost like I’m failing.  And yes, I understand that I have no control over a lot of things.  And that’s the point.  I need control over some things….like cleaning my house, making the meals….those little things.  But, it’s also those little things that pile up in my world and suddenly become overwhelming.  I often don’t ask for help because I just don’t know where to start…and my pride.  I’m a fixer.  I handle things.  I want to be able to handle the things in my life that I used to be able to handle…like the grocery shopping, the dinners, those simple tasks.  If you want to help…just do it.  Take a cue from Nike and just do it.  Want to help around my house?  Tell me when you’ll be by. Want to bring me a meal?  Just drop it off.  Want to drop off Starbucks?  Just leave it on my doorstep.  Want to drop off a gift for Iz to make her day a little easier?  Tell me you’re on your way.  Want to check on me at the hospital to let me know you are thinking about me?  Show up.  Because those things I just mentioned…are things that people in my life…family, friends, acquaintances, even strangers (who are now friends) have done.  They just completely ignored the shell of strength I put on…and just reached out.  Thank you.

10.  “I’m so sorry you are going through all of this.  I don’t know what to say.  Just know I’m here.”  Perfect.  This statement holds so much.  It shows me that my person doesn’t claim to “understand” what I’m going through.  She’s not trying to compare her child’s eczema with Evan’s heart condition.  It shows that she has thought about the perfect thing to say…and realizes…there isn’t much out there.  It shows that me that despite the fact she may not get my life or even understand, despite the fact that she can’t articulate the feelings she’s feeling for me, despite the fact that the friendship that was once very easy and carefree – is now suddenly riddled with difficulty, heartache and hardship – she is telling me – she will BE there for me.  And just being there…just showing up..is half the battle.

11. Nothing.  Here is perhaps one of the most important things I need to share.  Doing nothing, saying nothing, not reaching out…at all…because you think I’ll be bothered…or don’t know what to say…or you are scared…or you are offended by something I said or did (like this post, perhaps) is one of the worse things that you can do (or not do…I guess).  If you want to be a part of my life…please…do something.  Anything to let me know that you are thinking about my family and what we are going through.  But, also, don’t expect a lengthy reply of gratitude from me.  Whoa…sounds shitty.  But, here’s the honest to goodness truth.  I am depleted most days of emotion, of strength, of will.  It’s getting better the further along I get into this thing.  But, there are days where I get the email, the message, the text, the voice mail …and I see it, hear it, read it…but don’t reply. Not because I don’t want to…but sometimes…I just don’t know what to say, or I’m mentally tired and think a “thank you” just isn’t enough, or I’m sad (not at the message) but at the fact that I’m in this lonely world.  It’s super, duper grateful for each one I get.  Those that are continuing to send the emails, write the texts, leave the voice mails….and aren’t offended by my lack of reply…get it.  They are doing the most selfless thing…they are just being a friend to me even when I can’t be the best friend to them right now.  And just the fact that they are showing up (see #9) means the world to me.  Not doing anything….it creates a chasm in our relationship that I just don’t know can be filled.  It’s gutting to turn around when I finally pop my head up out of this all consuming world of a medically sick kid and fail to see the people I thought would be here.

 

Thanks for letting me empty out the remains of what’s in my head and heart.

 

 

 

 

Comments

  1. You say it perfectly <3 No one understands this life, except other heart moms! The only difference for me is, as a mom of a CHD angel, I wish I still was living the life of a mom of a medically fragile child…

  2. You are an amazing woman and I am grateful to you for your insight ! You have hit the nail on the head ! I loved reading your thoughts and the feelings you share are so true for both sides of the coin. I was one on the outside looking in to my loved ones journey through all of this and while I get to brag on GOD’S mercy that all is well with them , we too know it is never a place where you take things for granted , even for a moment ! There is never a day of letting your gaurd down fully even when they “are doing great” . I am so grateful for the blessings of intense joy that have come through their journey, but for awhile I was numb with fear too , not knowing what to do or what to say, I took comfort in just doing something , even if it was trivial, i felt that it would at least show her that i did not run to the hills !!! lol The fact that you see both sides while you are going through this is amazing and you like my friend will be always grateful you took the high road with looking to help others as you yourself journey through this life changing road . I am grateful that there are shining lights like you in the world who stay true to who you are and have compassion untold for the people around you.
    I will be praying for you and your family <3

  3. Rhonda Main says:

    Thank you ! Is all I should say , I really could not see anything you left out and those of us that understand and those of us that do not, well we are the one’s that do not live your life. Thank you again for sharing, this helped me so much to hear today ! I love real !!!!!!

  4. Thank you so much for sharing this. I agree with Karen, everything in this entry is stated perfectly. I, also, have a HLHS angel, my sweet baby Johnny, who passed away 2 months ago at the age of 8 months. Me and Erica D. were at Cardinal Glennon for several months together. Living the life of a Heart Mamma is as challenging and difficult as it is rewarding, and it is something that very few people can relate to. Which is why finding someone who understands it too is such a breath f fresh air. Thank you for this post, and I send my well wishes and prayers to you, your family, and your sweet little one.

    Maddy B.

  5. Czarina, as a father of a heart warrior I want to thank you for writing this. My wife is a member of the Heart Mamas group and she shared it with me. So much of this rings true for me and I can’t begin to imagine what it means to her. I am in constant awe of the strength you, her and every other mama of a congenital heart defect baby show. On the front lines each day. These children change our lives for the better. I’ve learned more from our little daughter than I could have imagined. To live. To love. To smile. To appreciate. To never take life for granted. To put my stresses and difficulties in perspective. I often get the sense that others, who want to help but simply can’t empathize, focus primarily on the negative. Even when they think they are helping. This is an amazing resource to pass on to them. 🙂 Thank you.

  6. I do not know you but have been following your blog through a friend on facebook. Praying for you many times. I too have walked your battle. Different battle with my 3rd child. A very sick little girl and we fought for her fragile life for 3.5 years. She won and is strong and healthy! There was no specific diagnosis for her just physcial degenerating during her first 19 months…and then only looking back could we see the beginning of God healing her. There were no doctors that could help! All and I mean all where baffled and confused! It was hard…HARD! The hardest thing I have ever done! I lost soooo many friends , mostly because my situation didn’t allow me to be the friend they needed me to be for them! Some because the length of my daughters illness messed with their beliefs and questioned their theology! I too was just surviving each and every day! Wanting so badly to be able to be in control of the littlest things like pick up my home, grocery shop, kiss my other kids ( not a helper helping me!) You will have some restoration with some of those friends! You will become a version of the person you were before,…..but you will be better off for it! God will be beside you everyday and you are doing an amazing job walking out your Faith! I am praying for you and will continue to pray for your son! BUt I will add to my prayers, specifically the personal struggle that you are going through! I have been there! Compared to the fragile condition of your son…it really doesn’t matter but then again… it does! So know a stranger, who loves the Lord, will specifically pray for you! You touched my heart and I felt as if I was reading my own life! I knew the Lord lead me to your blog! Blessings, Amy

  7. I believe you just spoke for all mom’s with a child who’s got a medically fragile child now can we copy and paste? Our emotions are so consumed we can’t even understand our selves. All I can say is thank you because this is how I have been feeling dealing with a daughter with leukemia<3

  8. Angela Hawkins says:

    I am not in your shoes, but a friend is. I came across your blog when she linked to it… and I wanted to say thank you. I am a three times survivor of Hyperemesis Gravidarum (if you’ve been watching the news lately, Kate Middleton has it). HG is a very serious medical condition that can and often is fatal to both mother and child. The advice that you have given in this entry really struck home with me, because it is advice that applies in my situations, too. Thank you for putting words to what I needed to but could not say.

  9. Heart Mom to DILV girl says:

    I have been reading your blog after coming across it online. I LOVE LOVE this post! My daughter is a single ventricle (DILV) not diagnosed until 8 days old and of course it was a huge shock to us. I wish I had this post a year ago, I would have given it to everyone I know. I have heard all of these but what really gets me is #1 and #8- REALLY? I also get “Yeah, you shouldn’t have anymore kids.” REALLY?- again! Ugh, people are amazing and so quick to judge. Also, ” you are so strong, I don’t know how you do it.” Really- am I supposed to walk away from my daughter? I remember being in the hospital a lot or homebound and all I wanted was a visitor– I couldn’t even get that most of the time. I was not in a state to beg nor did I feel like I should. Our whole situation has taught me so much about life the fragility, friendships, strength and FAITH. There must be a plan for all of us because my daughter was brought back twice in her first month of life, AMAZING!

    When people complain or take for granted things in life I tell them walk into the CICU and see all these babies fighting to stay alive and then tell me what there is to complain about.

    Rock on mama!! Your little guy is amazing and he looks so happy- can’t ask or more!

  10. Thank you for being so honest. My son was born with HLHS and I relate to everything you just said.

    THANK YOU for the affirmation in all these feeling I have. Thank you for making me feel less alone.