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Losing Isaac – Finding Life in the Death of a Child

Losing Isaac

Some of you will remember me sharing about the loss of our dear son Isaac four years ago in 4 Minutes That Changed My Life Forever. That post was from my perspective and have been asked over the last few months, by numerous readers, to have my wife share her side of the story. Make sure you have a Kleenex handy.

I still remember the day I learned my son would die like it was yesterday. It was an unusually cold and rainy day in late August. After ten years of life in the Midwest, I should have known that you never know what to expect with the weather here. Mr. Frugal Rules and I had just said goodbye to the sitter who was staying at home with our nearly one-year old daughter while we were going to find out the gender of our second baby at my 20-week ultrasound. My first pregnancy had been a breeze with no complications so we had no reason to expect that my second pregnancy would be any different.

An Unexpected Appointment

The timing of the pregnancy was unexpected. Suffice it to say that we learned the hard way that nursing doesn’t always prevent you from becoming pregnant. We were both a little shocked to be pregnant again so quickly. After the initial disbelief, we were both excited to be parents again and were eagerly anticipating our newest little one’s arrival. We were already jockeying back and forth with our favorite boy and girl names. While I knew in the back of my mind that anything could happen, the only thing I was expecting to discover at this ultrasound was the gender of the my baby and whether or not the early January due date was correct. I have never been so wrong in my life.

Unwelcome News

When we got to the clinic for my appointment, we were ushered into ultrasound room #2 where the tech took an unusually long time looking at our baby. When she suddenly rose and left the room without a word, we began to get a sick feeling in our guts that something unexpected was about to happen. Minutes later an older doctor with a kind face and beleaguered smile entered the room and took the ultrasound wand in his hand. After exchanging pleasantries, he turned the lights on and delivered the news – our baby appeared to have severe genetic abnormalities. He saw numerous disfigurements and was recommending an amniocentesis. I’m not a public crier. I often do whatever I can to avoid crying in front of others. On that day, I felt my body begin to shake uncontrollably.  The tears just began to flow. We scheduled the amnio for the next day and drove home in silence.

Stunned, we didn’t know what to say. Even as we waited for the amniocentesis to tell us exactly what was wrong with our baby, we were struggling to process the information we’d already received. The thought of finding out more was both comforting and foreboding. A few days later, the results of the test returned. Our worst fears had been confirmed. Our baby, a little boy, had an extremely rare genetic disorder called Trisomy 18. If you follow politics, you may recognize it as the disease that Senator and Presidential candidate Rick Santorum’s daughter Bella has. She is one of the truly rare few who are able to live a few moments past birth with the disease.

We met with a kind genetic specialist who explained that the disease has nothing to do with our genetics and is likely not repeatable but had resulted in our son having an extra copy of the 18th chromosome in every cell of his body. With all that extra genetic information floating around, abnormalities were developing. Some of those included a cleft palate, his stomach developing outside of his skin, club feet, and a heart with reversed chambers which the doctors saw as his greatest threat to survival. There was no way of knowing how much longer he’d live. I was 21 weeks along at this point in my pregnancy. Having all that information did not make the burden easier to bear.

I am a person of faith, and have been for quite some time now. I was surprised to discover that having faith did not make the pain easier to bear. I believed God was good and in control of what was going on with my baby and I believed He could heal him if He so chose. In fact, I prayed for that daily. However, the heaviness of impending loss did not lift. The tears kept coming and the pain felt like a slowing twisting dagger had penetrated my heart. It has been almost four and a half years since the events which I am describing took place. I am thankful, looking back that the Lord sustained Mr. Frugal Rules and I during the 12 hard weeks which I carried our son, after learning of his condition. While He didn’t take away the pain, He confirmed His goodness and love to me in the midst of it.

An Untimely Death

Isaac Joseph Schmoll was born on November 10, 2008 – just four days before my own birthday. He was a strong, courageous little boy whose identity and personality are shrouded in darkness. He lived four minutes but we were able to spend the day with him  at the hospital, washing and holding him before saying goodbye. I was the only one to feel him kick, to know his warmth. To hold his ashes in the palm of my hand. Writing about it still brings a lump to the middle of my throat. I suspect to some extent it always will. If you’ve made it this far in this long and painful post, I’d like to share a few of my thoughts on some of the good things that came out of that most difficult time. I suppose it’s my way of trying to find the silver lining in every cloud – something Mr. Frugal Rules says I often do since I am just naturally optimistic.

Life is Precious, Regardless of Length

Isaac lived four minutes but the impact he made in that time is palpable. God has given me 35 years. It makes me want to make the most of it. I rise each day now and thank the Lord for giving me another day to enjoy my family, my work, my church, my city, and most of all my relationship with Him.

People, not Things Matter Most

There was no toy, no gadget, no trip, no drink, no show, no thing that could deaden the pain I felt both before and immediately after losing my son. I remember distinctly watching TV absent mindedly, not at all engaged in the usually entertaining story lines. Even Seinfeld couldn’t make me laugh most nights. All I could think about was Isaac. While part of me wanted to avoid the pain, it was too great. Instead, I embraced it. I wrapped my arms around every sting and every dull ache because I knew it was evidence that my son mattered. I came to realize that the pain was so intense precisely because my love for him could match, if not exceed it.

Time Does Not Heal All Wounds

People don’t know what to say when you’re going through something like this so they will often tell you that in time, you’ll feel better. That’s not true. I know of couples whose marriages, lives and sobriety have fallen apart in the wake of the death of a child. Time doesn’t put distance between you and the broken heart you carry inside of you. But, the Maker of time does heal broken hearts. I struggled to share the following with you because I don’t want to offend you or make you feel like you are being preached at. However, I would be denying reality to leave out some mention of the God who sustained me during the hardest time of my life and who carries me still. Like Job’s wife, we have relatives that told us to curse God and die. But thanks to the Lord, as we looked up on what He has done for us, we were able to say with Job, “The Lord gives and the Lord takes away. Blessed be the name of the Lord” (Job 1:21).

We Don’t Suffer Only For Ourselves

Most pain is meant to be shared. We had friends come alongside us during that time who cried with us, prayed with us, laughed with us, made meals for us, cleaned our home and thanked us for letting them bear our burden with us. In time, we have been able to help other parents dealing with similar diagnoses or who are also facing the gut-wrenching pain of losing a child. It’s not something people really talk about and we want to be different because we don’t want parents to despair. We want them to know that there is light at the end of the tunnel.

Life Is Beautiful

Even with all of its disappointments, disillusionments and destruction, life is still a beautiful gift that goes by far too quickly. While many have had a harder life than I, I am grateful for the breath I draw and for everything – good and bad, pleasant and painful that I have experienced. Even the pain I still experience when I see Isaac’s picture up around our house (yes, that is his foot by the way in Mr. Frugal Rules’ hand in the picture associated with this post) is welcomed because it is evidence that he was here and that he impacted me.

Thank you for reading this lengthy post. If you are dealing with the loss of a child or any other loss and want to talk with either John or I about it, we welcome your comments. If you have a question, we’ll do our best to try to answer it. If you want to talk more privately, feel free to email us through the contact link on this site. I’ve included a link to more information about Trisomy 18, if that is what has brought you to this post and you are looking for more information. There’s also a link below to a blog that I maintained about Isaac for awhile where you can read more about his life and death.

Trisomy 18 Foundation
Losing Isaac

 

Photo courtesy of: Nicole Schmoll

 

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I'm the founder of Frugal Rules, a Dad, husband and veteran of the financial services industry. I'm passionate about helping people learn from my mistakes so that they can enjoy the freedom that comes from living frugally. I'm also a freelance writer, and would love to help out if you have the need. If you're wanting to learn how to monetize your blog, check out my blog coaching services to see how I can help you take your site to the next level.

65 Comments

  • Thank you for sharing your story. It’s a poignant reminder of how precious our time with those we love really is.

  • Thank you for sharing this beautiful. This must have been very difficult to write. It is a great reminder of what is truly important in life. Thanks again for sharing.

  • Thanks for sharing your story. I feel blessed to have already learned how important relationships and people are to us and to always be thankful for the time we get to spend together because we never know when it will end.

  • Thank you so much for sharing your story. It was incredibly moving and I can’t even begin to imagine going through something so difficult. What a reminder to us all what is truly important in life.

  • Sharon Goist says:

    Thank you for sharing. You are a remarkable family. I lost a full term baby girl, Regina Maria 45 years ago. You are right – time does not repair a broken heart. My child was a twin and developed after a miscarriage of her sister. I had a placenta priva and lost her the last 10 minutes before she was born full term. Thank you for sharing your story. I’m sure our Lord is so in love with our children. He is taking great care of them until we can be with them again. We are blessed with life! We now have 3 grown children and 13 grandchildren! We had trouble with each pregnancy but one but it was all worth it. We had 3 more miscarriages but could then not have anymore children. The ones we have and the grandchildren we have are so precious to us! God bless you all.

    • Nicole says:

      Wow. Thank you for sharing Sharon. I am so thankful and encouraged by your attitude as you look back on what happened to you and your family. I firmly believe I will meet Isaac in heaven someday :) We too were blessed by God after the loss of Isaac. We have two beautiful sons and one precious daughter to lavish our love on daily :)

  • Wow, incredibly moving Mrs. Frugal Rules. I thank you for sharing your story and providing a perspective of a woman. I am at a loss for words.

  • Catherine says:

    I cannot imagine. I already e-mailed John after his post. Having gone through a scary pregnancy myself I know how scary it can be. Until our daughter was born there were some uncertainties. I count my blessings every. single. day. Thanks again for sharing.

  • AverageJoe says:

    Isn’t it powerful how many good things can come out of something so, so devastating? You’ve been able to teach a ton to people about life because of your experience. That’s a strong testament to Isaac’s life!

    • Nicole says:

      Joe, it never ceases to amaze me how God brings good out of bad. I count it a privliege to be able to help others, in whatever small way possible, to get through their own grief and loss by showing them it is possible.

  • Jose says:

    Thank you for sharing this. It hits very close to home. During my first marriage we lost a full term baby. Even to this day the memory of the Doctors Visit, the Hospital and the delivery are painful. That was probably one of the worse periods in my life and I know it changed my view and perspective on many things forever.

    • Nicole says:

      Thank you for sharing, Jose. I too think, even if I get alzheimer’s, I will never forget the emotions I felt on the day we discovered Isaac’s sickness and the day we lost him. However, I will also always remember the sweetness of bringing home Perry, our second son, a little less than a year after losing Isaac. He continues to be a sweet sweet blessing.

  • Thanks for sharing, however hard it must have been. I think others will be able to read this and know that they aren’t alone when going through horrible circumstances. It really is true that our relationships and family are what sustain us. Things really don’t amount to much when you put it all in context.

  • I can’t even pretend to imagine what you went through and are still coping with. There are some things in life that you’ll never fully get over but I find it admirable that you’re still able to see the good things in life and havn’t become bitter. I’m sure this post will touch a lot of people.

  • Michelle says:

    Thank you for sharing this. I’m sure it was extremely hard to write and tell us all.

  • I’m so sorry you had that loss in your life. I can’t imagine. Thank you for sharing your beautiful story!

    • Nicole says:

      I don’t think we ever can imagine until we find ourselves in the middle of the circumstance. I’m happy to share if it helps someone else know they are not alone.

  • Thanks for sharing this Nicole I can only imagine the pain but I also believe you are both able to help other couples who are going through the same thing and that they aren’t alone.

  • Stephanie says:

    We lost our first son, Aidan, in my second trimester as well – he had an omphalocele. They couldn’t find a heartbeat at a ‘routine’ OB appointment that I went to by myself. . . Then I got an ultrasound a few minutes later and I remember being hopeful that maybe they’d tell me if it was a boy or girl because I was CERTAIN it was a boy. My experience during that ultrasound was similar to yours and I had never seen an ultrasound before so I didn’t realize immediately that my baby was dead although it was clear to the tech and doctor. I was so enchanted with seeing his little body, and he was beautiful, that I didn’t notice that he wasn’t moving. And because my husband didn’t have a cell phone at the time, and it was late in the evening by the time I left the OB’s office, I had to drive myself home with this news and wait for him to arrive.
    That was nearly 8 years ago and I just had to pause to wipe my tears. I have had two healthy kids since and they are a treasure. My first pregnancy didn’t turn out as I’d hoped but its devastating end doesn’t negate its beautiful and blissful beginnings and our hope and wonder at starting a family together. It’s hard to find beauty and grace during really challenging times, but it’s always there.

    • Nicole says:

      Wow, Stephanie. Thank you for sharing. It’s always surprising to hear that other parents have gone through similar experiences as we did. When we were in the thick of it, it felt like we were the only ones. The more we share our story, the more we see how untrue that is.

      • Stephanie says:

        I agree. We went to perinatal support group afterwards which probably saved our marriage from imploding from grief and it was SO helpful to know that others have dealt with it and will grieve with you. Its a very isolating experience to go through usually. Brian and I met some lifelong friends through this group and he usually sums it up by saying it’s ‘membership to a club you never knew existed or ever wanted to belong to’.

  • Mackenzie says:

    I am so, so very sorry for your loss, truly. I am crying as I type this… your story has touched me as a wife, as a mother and as a Christian. You are an incredibly brave person and thank you for sharing your story.

  • I am at a loss for words. First my deepest condolences to you and John. Your words beautifully articulated the heartache of losing a son, but I imagine the actual pain is indescribable as I know it would be for me. I agree wholeheartedly the more you love someone, the greater the pain when you lose them. I’m glad your faith and love for one another carried you through the storm. You’ll see your son again, healthy and whole. Bless you and thank you for sharing your story with us.

  • pauline says:

    Thank you so much for sharing such an sad and beautiful piece Nicole. The saying was my favorite from your moving video. You are very blessed to have found strength in your faith, your husband and family to keep going, when others would have sunk into sadness and anger. It will not bring Isaac back but you and your beautiful family deserve a happy life.

  • eemusings says:

    I am so sorry for your loss and what you two have had to go through. Beyond that, all I can say is echo everyone else in thanks for having the bravery to share.

  • This is an incredibly beautiful post. Thank you for sharing; I’m so sorry for your loss.

  • Thank you for sharing this meaningful post. My wife and I also believe that everything is in God’s hands and struggle daily to understand some of the obstacles that are put in front of us. I know first hand how quickly life can be taken from us but I also know how much you start to cherish life when you realize this. While the situation is far from what you and Mr Frugal Rules wanted, I’m glad you were able to spend those 4 minutes with your son before saying goodbye.

    • Nicole says:

      Thanks Marvin. I am thankful for the four minutes we were able to spend with our son. His short little life showed me in a way I will never forget that the measure of a life is not its length nor its accomplishments. That little boy touched many lives and touches them still and brought glory to God in his own sweet little way. Thanks again for taking the time to read and comment on our post.

  • Matt says:

    God Bless you both. I read your last post about Isaac, thank you for sharing this one too.

  • Thanks for sharing such a beautiful and painful personal story. I’ve never been good at dealing with these type of emotions whether it’s myself or someone elses. But God has gotten me through them each time. Even after becoming a Christian I found it difficult to see God’s plan in it. Like you I experienced what Job went through. But have learned that we see things short term through our own eyes and God is long term taking our eternity into consideration. This perspective has certainly helped me keep the faith.

    • Nicole says:

      So true John. Its mind bogling to try to comprehend all the details that God is working together after the counsel of His will. Its funny but if you would have asked me going into it what I thought I’d learn coming out the other side, I never would have told you love but God’s everlasting love is exactly what I experienced carrying, sustaining and holding me every day during that most difficult time. His grace truly is sufficient for us!

  • Justin@TheFrugalPath says:

    Thank you for sharing your story. As my wife and I continue to try and conceive our first child this is something that I have thought about on more than one occasion. You and John have gone through something no one should be required to experience.

    • Nicole says:

      Thanks Justin. I do think losing a child is one of the most painful experiences we can go through – regardless of the age of the child when we lose them. However hard, it was worth it. I hope that you and your wife soon have a sweet, joyous experience through pregnancy, delivery and the raising of how ever many children you end up having.

  • Having just welcomed our son into the world I cannot even imagine how difficult a time you must have had with this. Reading your story really makes me appreciate how lucky we really are and also how precious life is.

    • Nicole says:

      Thanks, Glen and congratulations on the birth of your son. What we experienced is something I wish no parent ever had to go through. Enjoy every moment with your sweet little boy.

  • No words. I’m not a mom, but I can’t imagine any greater pain than losing a child. God bless you both and thank you for sharing your story. It should serve as a reminder to all of us about how precious life is and how much we have to be thankful for everyday. Even when things seem, “bad” he always a bigger plan in store for us.

    • Nicole says:

      Thanks, KK. I think it is hardest to have faith when we can’t understand why things happen. We are thankful to have come out the other side with our hope and joy intact.

  • jim says:

    Oh, wow! Thanks for sharing such a deeply personal and painful story. I will never again go thru “4 minutes” of my life not fully appreciating every nano-second of it. God bless little Isaac and you and all your loved ones. Wow – still crying.

  • Jim says:

    OMG, This is a tearjerker. May God Bless you and Mr Frugal Rules, I am so sorry to hear about your loss!

  • Sonya Miller says:

    Your story is so powerful! I’ve been asking the Lord in prayer to comfort my relative that just lost her child about a month ago. Reading this has enlightened my understand to know better how she feels. And just like you said people don’t know what to say to a person when they face the loss of a child. I’ve asked the Lord to guide and direct me because I definitely don’t want to say the wrong thing to her. Thank you so much for sharing! God bless you and Mr. Frugal!

    • Nicole says:

      Sonja- your relative is blessed to have you in her life. Your love will mean more to her than your words which will find a way to bring comfort. I remember sometimes all we wanted was someone to cry with.

  • Christina says:

    Thanks for sharing. We lost our son 6 years ago this week. I am truly thankful for the 41/2 days that God allowed us to love him here. It is very true that the pain never goes away. I am greatful that with God’s help, we along with our 3 other children at the time were able to move forward and see the positive in something that isn’t. Six months after, we were blessed with getting pregnant with both of our hearts desire- a girl. We are the luckiest family in the world- 4boys and 1 girl and an angel that watches us from heaven.

    • Nicole says:

      I’m so sorry Christina. Thank you for sharing your story. You are truly blessed indeed. I like to think that our boys may know each other in heaven.

  • Your story puts so much about life into perspective. One of our pregnancies ended in a miscarriage and it is so devastatingly tough when you are expecting such joy in the birth of child. While painful, it was comforting to know that God had taken our child into his presence and one day I will get to see him again. God bless you guys as you continue to heal and minister to others.

    • Nicole says:

      Thanks Brian. I agree with your comment and also believe we will see our son again someday. No child should ever die but thank God He comforts us when they do.

  • Leslie says:

    Thank you for sharing. I can’t imagine the strength it took to see yourselves through. It is great to see the impact that faith, friends and family had for you. I have not been blessed with children, which is a different type of painful struggle, however reading your story and your philosophy on dealing with loss helped.

  • Wow, thank you for sharing. I hope writing it was just another little step and movement for you. I can’t relate to the level of pain or confusion with it.

    It does make me think about how unprepared many churches messages make believers for extremely challenging events. God is the lover of our souls for sure, but this life has many challenges and difficulties. Not all of us will prosper and experience great “victory” at every point. I love that Proverbs says it’s better to be in a house of mourning rather than one with feasting and strife. God is with the down-trodden and broken hearted. Jesus was a man of sorrows, and he understands our pain. Thank you so much for sharing your story and being honest. It really gives me hope that no matter how difficult of a circumstance we can face that it is do-able and God is there!

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