A Hart-felt Tribute

When Hart was born, my amazing sister and her awesome family were living in Beijing, China. She was unable to come back to the states when he was born, but made the long, arduous journey when he died. My deep need for her to be there felt physical. I needed her like I needed to breathe and for my heart to beat; I needed her to survive. 

There are two people whose words have always brought me comfort and healing. Two voices that are a soothing balm whenever I call out. Their love feels like home to me. Fourteen years ago, as we were preparing to bury our child, I needed to hear those voices, their words, their wisdom more than ever. I knew that others would also be consoled by their curative prose. My brilliant sister and my extraordinary friend Tanya, both graciously agreed to speak at Hart's funeral. I don't know that they have any idea what that meant to us, but even now, when I think about the enormity of their gifts, I am overwhelmed by love and gratitude.  

The following is what my sister said at Hart's funeral. Rereading her words bring me comfort at various times in my life and apply to many situations.

I am finally alone, I have a sixteen hour trip ahead of me. Lord, I really need this time... solitude to think, time to talk with you.

You know how hard it's been for me to be away from Erin and her family, halfway around the world. I can't get there fast enough... but I am also staring my complete inability to make it better right in the face. 

I want to fix it. I want to bring your peace and comfort to them. Sometimes the pain seems more than we can bear. I thank you Lord for those moments of joy, in spite of our broken hearts. 

The psalmist writes, "I cried out- I'm slipping, and your unfailing love O Lord, supported me. When doubts filled my mind, your comfort gave me renewed hope."

So we come to you Lord, as Paul writes in Hebrews, "Let us come boldly to the throne of our gracious God, there we will receive his mercy and find grace to help us when we need it."

We thank you that we can come to you Lord, unafraid, raw, honest... and lay it all down before you. Thank you that we can say: this hurts, we don't understand, This Stinks! We can scream, cry out and this doesn't change how much you love us. Nothing can ever separate us from your love. You will never leave us, you will never forsake us. 

Thank you Father for the miracle of Hart. Thank you for choosing Erin and John to be his parents, and Curtis, Grace, Annabel, Satchel and Felix to be his brothers and sisters. You knew from the beginning that they would love him unconditionally and not hold anything back, even though they knew his time here would be short and how hard it would be to say goodbye.

Against all odds he survived the pregnancy, he made it through labor and delivery and lived with his family for 24 days! We thank you for his 24 strong, healthy and joyous days.

I love Psalm 139 where David says, "You saw me before I was born, every day of my life was recorded in your book. Every moment was laid out before a single day had passed."

So many of the truths we know Lord, but sometimes we need to convince our broken hearts to embrace them. Our hands ache to hold, our arms feel empty.

Give us your grace in full measure. Let us feel your hand on the small of our backs, and help us console each other. Take us through this as only you can, to embrace our pain and Hart's death and still embrace life, to go on trusting and loving, knowing that you are faithfully meeting our every need.

I pray that you will flood our hearts with your light and may your peace wash over us like a holy flood.

Amen

You're Not Angry at God?

You're not angry at God?

I was asked that question, tinged with incredulousness, many times while I was pregnant with Hart and quite regularly after he died. As I tried to wrap my head around everything that was going on, I went through a myriad of emotions: sadness, fear, doubt, confusion, helplessness, determination, acceptance, joy, awe. But I don't have any recollection of being angry. I reread all of my journal entries from that time-no sign of anger there either (although I did find a couple of entries that were clearly written for the sake of posterity-or the inevitable VH1 Behind the Music episode of my life -because obviously) but, never anger.

I never felt as though Hart was a tragedy that God "allowed to happen"-like He sometimes allows bad to prevail and we lost some big celestial coin toss. Nor did I feel that He took a terrible situation and made lemonade from lemons. I believe that every part of Hart was God's plan. His life and death were all part of a divine, purposeful intention, exactly as it was. I came to understand that, although Hart had the "too many" chromosomes, he was perfect. He was fearfully and wonderfully made. My soul knows very well the wonder of His works and my grasp of what that looks like grew infinitely. And while my mama's heart would give anything to still have Hart with us, and I miss him like crazycakes every single day, that wasn't God's perfect plan.

When our desires match up with God's will we call ourselves blessed. We humblebrag about how blessed we are, complete with pictures, on social media. When we just miss personal tragedy or hear of the misfortune of others, we exhale in relief and count our blessings. But, when what we want and what God wants for us don't align, are we any less blessed? No, we are blessed, not by what our hearts long for, nor by the serendipitous aligning of those desires with God's will, but we are blessed because we are.

As a Christian, I am commanded to love God and to love others as I am loved. That is what I strive for (and fail at) daily. It's the "as I am loved," part that trips me up. I don't know that the unconditional love of God is something that we can truly understand, let alone practice, but that is the aim. Is it possible to truly celebrate that each of us is made in His image and for His glory, then proceed to parse out to whom that really applies, who is worthy? How often do our ideals become stumbling blocks preventing us from loving others unconditionally? Anger, fear, doubt, pride all get in between us and love. We preserve our love and sparingly dole it out to those we choose, those who earn it or we deem worthy. Why do we try so hard to conserve something that is infinite and made to be given in abundance to others unconditionally?

I felt, and still feel, as if God chose us to be Hart's family. When he entrusted us with this awesome gift, as cheesy as it sounds, I got a glimpse of divinity. In addition to the change in me,  I witnessed God's love and how he changed others through Hart. "Seeing" God so intimately affirmed and strengthened my faith in ways that are too big for words to hold. It also shed a layer of the humanism that is woven (I believe by divine design) into our relationships with Him. Perhaps that layer was anger.

It is in loving Hart, in holding him, in seeing the perfection in him, in seeing the reflection of God in him, that I experienced awe instead of anger. That awe is with me every day. It brings me peace and comfort that my faith cannot be restrained by my understanding,  that it is beyond the capacity of words and emotions!

It's the Little Things...

Lately I've been spending too much time fact-checking the news. I read the same "news" from every conceivable source I can find. It is exhausting and often disheartening. The old adage, "There are three sides to every story: yours, theirs and the truth," is just a faded memory! I wish there were only three sides! My head is spinning and my heart is heavy. Plus, every time I read the word Russians, I start singing:

We share the same biology,
Regardless of ideology
But what might save us, me and you
Is if the Russians love their children too

Which is one of my favorite Sting songs, but seriously, those are the only lyrics I can remember and I don't have time to look them up because I'm too busy fact-checking! UGH!

So, today I decided to take a respite from all of the checking and rechecking to make a list of some little things that make me happy! I'm guessing I'm not the only one who could use a break from the time-suck that is the all-access, 24 hour news cycle. What little things make you happy?

 1. This text!

 2. Hot coffee

 3. Beautiful books

 4. Art making

 5. Clever song lyrics

 6. The crunching sound leaves make when you walk on them

 7. Glitter

 8. Sassiness

 9. The smell of hardware stores

10. Words

11. The number 11

12. Unexpected kindness

13. Laminating

14. The lemon tree I grew from a seed

15. My freshly made bed

16. The term-esprit de l'escalier (the wit of the staircase) which sums up my life

17. When I don't suffer from esprit de l'escalier and think of the perfect response at the perfect time

18. Rapper's Delight

19. Finding things you thought were lost for good

20. People standing up for others (especially when it goes against their personal beliefs-putting 

      people over things, policies, and ideals always makes me happy!)

21. Clocks

22. People who know the right thing to say

23. People who know when to stay quiet

24. Symmetry

A Beautiful Hartbreak

I was sitting on my sofa, cleaning out a bag of papers and I pulled out an unmarked file. It contained sheets of journal entries, a hospice newsletter, a church bulletin with John 9:2-3 underlined (Upon seeing a blind man, His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither this man nor his parents sinned; he was born blind so that God's works might be revealed in him.) and many drafts of my notes for an event at which Steadfast Husband and I were asked to speak.

I am a terrible public speaker-I get really anxious-my heart actually began to race a bit just now as I typed those words! Anyway, I am very uncomfortable in front of a crowd and the event we were asked to speak at was a continuing education class for medical professionals. The focus was how to support patients and families in times of bereavement, so on top of fretting over speaking in front of others, there was the risk of derailing careers and causing further pain to grieving families. But I kept thinking, if I can help someone learn how to better support even one of their patients, then it will be worth it. Plus, Steadfast Husband is completely comfortable speaking in public, so if I ended up unable to utter a word, I knew he would carry us through. (Although we learned that when the subject is this personal, preparation is key...one of us learned this the hard way and one of us had a fan club by the end of the standing ovation I, er, I mean, we received.)

Anyway, when I read through it this morning, I felt compelled to share it. While I feel very vulnerable and exposed, it feels like the right time. And if it leads one person to act with more compassion or understanding, to extend a small amount of grace or act empathetically toward another, then it was worth it.

Steadfast Husband and I took turns recounting the same memories from each of our perspectives. I don't have any notes for his parts (because he didn't write any) so, unfortunately I only have my half. I'll mark where he spoke for the sake of clarity.

A Beautiful Hartbreak

On my way to Barnes & Noble to write the eulogy for my grandmother's memorial service, I stopped at Target to purchase a pregnancy test. They were on sale, which I took as a sign-of what? I'm not sure.

When I got to Barnes & Noble, I seriously contemplated conducting the test in the bookstore's restroom (I'm not very good at waiting), but the thought of Tiffani, the store's cafe' barista walking in on me, along with my desire to enjoy what what might be my final, (for awhile) caffeine-filled caramel latte convinced me that the privacy of my home was a much more desirable location!

Maybe it was the grief, maybe it was the caffeine, or maybe it was the desire to perform chemistry experiments in my bathroom, but my grandmother's eulogy came flowing out rather quickly and eloquently.

When I returned home, I ran upstairs to my bathroom to take the pregnancy test. As the positive line became clearly visible, delight and anxiety overwhelmed me. Suddenly, hormonally charged tears were burning my eyes and I began laughing. I was so excited, but the thought of raising 6 children seemed overwhelming.

I found John and out of a perverse joy, said those 4 little words designed to send a rush of adrenaline surging, "We need to talk." Of course the smile on my face along with the tear stains on my cheeks had him completely confused.

(John's response)

We decided to keep the exciting news to ourselves for a while.

The Tuesday before my grandmother's Saturday memorial service, I went to the doctor and she ran a blood test to confirm the pregnancy. On Wednesday the nurse called to tell me that my HCG (hormone) levels were low and that the pregnancy did not look viable, so she set out to schedule an ultrasound for the following week as they were already booked for Thursday and Friday. I told her that the thought of waiting almost a week was unbearable, especially given that I would spend the weekend saying good-bye to my beloved grandmother and asked her if they had any openings that day. Forty-five minutes later I was on the ultrasound table looking at a 15 week gestation baby! I was MUCH further along than I expected. And let me tell you, when you are prepared to see some tissue and are silently praying for a flicker of a heartbeat, being asked if you would like to know the sex of your baby is a bit of a shocker.

Lisa, the ultrasound technician, was a friend of ours and not just because we had bonded over countless ultrasound hours, but she was also a neighbor, so I thought nothing of it when the exam went on for a very long time. She then showed us one of a couple of anomalies she was seeing on the the screen. These "markers" indicated that I would need further testing. Then things became fuzzy and I only heard bits and pieces of what Lisa was telling us. "Everything is probably fine." "These things usually turn out to be nothing." "Amniocentesis." "Advanced maternal age." "...one in a million of something actually being wrong." I felt John holding my hand and brushing a tear away from my cheek.

We went to my grandmother's memorial service with more questions than answers.

(John's response)

The following Monday we met with the genetic counselor, Jennifer. She went through a litany of statistics and probabilities. Chances looked pretty slim that there could be anything wrong, but there was a need for further testing. Each test result we received, brought with it a higher chance that something was mortally wrong with our son.

On July 9, 2004 we got the phone call we had been anxiously awaiting and dreading. Jennifer, our amazing genetic counselor, told me that our son had full trisomy 18. I set the phone on the kitchen counter and walked out of the room, fortunately John picked it up, since Jennifer was still on the other end.

(John's response)

We went into fact gathering mode. We searched the internet, called my OB, our pediatrician, a neonatologist friend, and every other person we had ever met, and many we hadn't. The general consensus was that we should end the "non-viable" pregnancy. That was certainly an option, but in Indiana I only had 1 1/2 weeks to decide if that was the choice I wanted to pursue, and the one thing I knew for sure, was that wasn't enough time.

Jennifer, went to work finding out the laws in surrounding states, but by the time we learned the nuances of regulations in Ohio verses Michigan, we had decided to continue with the pregnancy for however long that may be. Chances were very slim that I would make it to term.

Journal entry from July 24, 2004 (A letter to my son)
The thought of looking into your face and justifying any decision is overwhelming. I long to look in your eyes and connect with you. Is that possible? I don't know. Will you ever take a breath? I'm not sure what to do. I'm also scared to look in your eyes, to hold you, to love you- but it's too late for that, I already love you. I feel like you are a gift from God and our family was chosen to be touched by your life-whatever that turns out to mean. I feel like we'll be okay, but what if we aren't? What if faith isn't enough to carry us through? I know I am unable to grasp the gravity of the grief I will experience upon your death, but I believe with all my heart that this is of God and He will make it not only okay but better than we could ever imagine. How will your brothers and sisters deal with your death? Your life? I can't risk their well being, but they also have strong faith. Do they know this is all of God? Do they feel His hand? Do they know He will catch them if they fall?

Journal entry from July 25, 2004
How am I ever going to deal with my baby's death when I am struggling so much through his life?

(John's response)

Early on I realized that baby Hart was a miracle. Not the obvious-You're healed- type of miracle- I never really felt like that was the plan, but I felt like his presence in our lives would bring many whispered miracles. One of the first things that happened was the freedom we felt after we accepted that there was nothing we could do, meaning we couldn't cure Hart, there was no cure. We couldn't even help him make it through the next day. At first the thought of this was very frustrating, but once we embraced that there really was absolutely nothing we could do, it enabled us to let go of our need to control the situation, and just be.

We did a lot of praying. We prayed for peace, we prayed for clarity, we prayed that our other babies would be okay and accepting, we prayed for the chance to hold our son and I prayed for God to, please, take away the sick in my stomach feeling that was becoming unbearable. It was leftover from waiting to hear results of tests and I couldn't stand it. I prayed and it was gone!

Apparently baby Hart didn't get the memo that he was supposed to be getting weaker and eventually fade away. Each doctor's appointment his heartbeat was strong and rhythmic and he was very active. As my pregnancy progressed, many of the "markers" that were apparent in early ultrasounds began to disappear and we began to have hope that Hart would be born alive. We continued to prepare for what is not possible to adequately prepare for, but held on to hope that we would maybe get a minute with our son before he passed away.

In September it became evident to others that I was pregnant and I started hear, "congratulations," and, "when are you due?" I had to practice saying thank you and giving my due date without going in to a litany of the real gift I was receiving. I quickly realized that it is not easy to convince the gal at Target that you are walking around experiencing God's glorious grace after you've said the words, "Actually my baby is going to die, but....no wait up, seriously, you want to hear this."

(John's response)

What would this miracle have looked like had we decided not to continue with my pregnancy? I don't know, but I do know there would have been one. People often assume that I am not pro-choice based on our decision. I'm not sure why I am so offended by this, but it's so important for me to let people know this was my choice. I don't know how things would have felt had I been "forced" to carry Hart without the choice, but I do know that I don't like to be bossed and the situation is too big to enter into without carefully, thoughtfully, prayerfully choosing to.

Comfort and Care

I recently read an awesome article on Scary Mommy entitled The One Thing You Should Never Say to a Grieving Parent by Stacey Skrysak. It talks about Stacey's experience with a woman at a park who, upon learning that Stacey's daughter was her single surviving triplet, said to her, "At least you have your (surviving) daughter." While, in general, I could write a book about what not to say to a grieving parent, this beautifully written article speaks to an endless internal debate: should I mention my child/children who are no longer here?

As a parent, you are asked countless times, "How many children do you have?" As a mother to an "excessive number of children,"(which I've been informed is any number over 3) I've been known to claim only the children in my immediate proximity. I obviously don't lie, but when people say, "Oh a boy and a girl. That's just perfect!" or "3 girls, sisters are the best. And no pesky brothers to get in the mix," I just smile and nod. When people learn how many children we actually have, I often hear the inevitable, "Six? Wow! Don't you know how this works?" as they wink and nudge my husband. So out of a desire to not see people's heads explode, I don't always add that we've actually had 7 children. (Plus, I've learned that when people make awkward procreation jokes, talking about a child who has died takes the last bit of air out of the room.)

When I was pregnant with Hart, I asked my brilliant friend Marian how she answers when people ask many children she has. She lost her beautiful baby, Matthew, and her grace and wisdom told me that her answer would guide me in my own reply. She said that for her, it depended on the situation, but often she would reply with, "I'm raising 3 children." Which she said allowed people to inquire further if they were curious, but didn't force an uncomfortable topic onto those who weren't.

I asked the amazing hospice child life specialist, Sheila, about it. Her answer was very similar to Marian's. This was in the very early stages of knowing that Hart was unlikely to be born alive. As we continued talking, I told her that I have a brain that yearns for symmetry and rhetorically asked how I could rectify this in Christmas pictures and (embarrassingly) said I would have to have another baby in order to create the symmetrical picture of my dreams. Fortunately, Sheila was as kind and loving as she was professional, and didn't sound any alarms at my completely inappropriate musings. I cringe when I think back on this, but as I was trying to wrap my head and heart around this very big reality, my mind went in all kinds of bizarre directions. Read more about our hospice journey in this Indianapolis Business Journal here.

Sometimes, in the desire to comfort a grieving family, people will say, "at least it wasn't _______________," (fill in blank with any surviving children). We heard this several times, and I always assumed this happened only to families who lost young babies. The reasoning? Because they were here such a short time, you didn't have as much time to bond with/get to know them. I've since learned that people say this to parents grieving children of any/all ages. At least he wasn't your only boy, at least it wasn't your baby who hasn't had a chance to experience any life yet, and on and on it goes. I understand the need to find a thread of "good" in death, but in reality, there is no "best" child to lose.

It feels like a burden to have to share such heavy news with someone you've only recently met, but it feels like a betrayal to your child to leave him out of the conversation. The bottom line is that there isn't a day that goes by that any parent who has lost a child doesn't think about that child and, in my experience, they are longing to share them with others.

A Love Letter to My Heroes

Fourteen years ago today, I gave birth to a beautiful baby boy. For Hart's birthday this year, I want to celebrate his remarkable siblings. My children are who they are in large part due to the love they give to and the love they receive from their siblings. Hart is a huge part of this equation.

I am often overwhelmed with thoughts of love and admiration for my children. These feelings are so big, that I often feel my heart will burst at the inability to contain them all. Not only do I think they are creative, intelligent, funny, kind, empathetic, contributing members of society; they are the unsung heroes of our life story, especially the chapter entitled, Hart.

Whenever I mentally walk through the timeline of my pregnancy with Baby Hart and his brief life, the only doubts or regrets I feel are tied to my other children. These feelings are connected to very specific stops along our journey. The first was when we told them that our new baby "was not compatible with life." Watching their faces as they wrapped their minds around what we were saying is seared into my memory. Also, remembering their pain, grief and confusion after he died. As any parent knows, watching your children suffer is a gazillion times worse than suffering yourself. It is unbearable and hurts your very soul.

My amazing children were victims of our decision and I knew that they would ache and grieve and never be the same after losing their brother. I worried that Hart would appear scary to them (often children with trisomy 18 are born with physical anomalies that I worried could be upsetting for my small children). I worried that he would die while one of them was holding him. I worried that they would feel responsible, neglected, unsettled, disconnected and unable to bond. I worried that Hart would die at our home and that we would become an urban legend-children would ride their bikes extra fast as they passed our house, pointing and saying, "That's the house babies die in." I worried they would be angry. I worried that they would be afraid. I worried that their childhoods would end abruptly as happens when real life interrupts the magic of innocence. I worried they would be anxious, that they would learn that sometimes babies die. And I worried that they wouldn't receive the support they needed to properly grieve (as if there is such a thing).

And if I'm being completely honest, some of these worries came to fruition, some did not, and some popped up that I hadn't anticipated. My oldest daughter came home from school one day and told me that another student accused her of making the whole thing up. And while she definitely has a knack for the creative, I was flabbergasted that any child would think another child capable of making something like this up. (And I was kicking myself because "it's all made-up" hadn't even made it to my list of many worries.)

For all of the heartache that we "willingly" caused our children, what came out on the other side was nothing short of miraculous. To this day, my children are empathetic, sympathetic, and insightful. They have a grasp on putting life in perspective that is well beyond their years. They know some battles are worth fighting and some just aren't. When others grouse about how stinky, disappointing and unfair life is, they know that is true and that in spite of those things, or maybe because of them, life is so beautiful. They have firsthand knowledge that life is precious and unpredictable; that disappointments are relative; that being unkind is never worth it. They know that they live in a world full of unknowns, and things that aren't easily understood, but erring on the side of love is the right thing to do and is much easier to live with. They start from love and end in love, time and again, even when it's bumpy along the way. I don't think these are things I would have known how to teach them. I know it could have turned out very differently for them, I've seen that. They could be filled with fear, anger, hate and conceit. And living in and acting from any of those places usually doesn't bode well.

We knew none of us would ever be the same, but I definitely believe we are better people because of baby Hart.

One thing I didn't worry about, but perhaps I should have, was what any of us looked like. It seemed completely unimportant at the time, but looking back, I am reminded of what a hot mess we actually were!

A Found Treasure

As I was preparing for our annual birthday celebration and homage to baby Hart, I stumbled upon a journal entry from about a month after his funeral. Reading past journal entries brings the beautifully messy gift of transporting me back in time, complete with every emotion I felt when I wrote them. I'm often in awe of what I was able to see or understand through the fog of grief. When I think back about that time, I feel like all I could see was fog, so I would often close my eyes, but these journal entries show me otherwise. (Although they also prove that sometimes I was, in fact, blinded by grief.)

February 6, 2005

We went back to church for the fist time since Hart's funeral. I cried when I took Felix to Sunday School class and spoke to the always fabulous Miss Anne. Over the summer I told her about Hart. This was, of course, after we decided to let God prevail. She said, "What a strange thing to know." With the simplest of words, our beloved Miss Anne struck upon such a deep truth. It was a strange thing to know.

I am so grateful we knew. Because of this, we were able to garner so much support, information, knowledge and some understanding.

To know a child is going to die, would many people decide not to have that child, to protect their hearts from unbearable pain, meanwhile missing out on a great, beautiful love? What if that child had 2 months, 6 months, a year, 16 years to live? How long of a life is a life worth allowing? We are all going to die, none of us has a guarantee.

I feel as though, for our family, knowing Hart's entire life would be brief was a blessing. Had you asked me before, I would have insisted that I would rather not know. But knowing enabled us to make a decision. A decision that no parent should have to make, yet everyone should have the right to make.