Yesterday I sat in the parents’ area during one of Annie’s classes, chatting with the other moms. Everyone was mostly making small talk when one of the moms mentioned off-hand that the baby in her care that day had been born premature. Suddenly, everyone was telling prematurity stories. Everyone but me.
I listened as the first mom talked about how small her charge had been (four pounds, five ounces). I listened as the mom of twins said how happy she’d been to carry her boys to thirty-five weeks. Someone else had a niece that was born premature. Then one of the moms told us about her daughter that was born at twenty-four weeks, and as she spoke I watched that very daughter tumble and play with my own.
I tried to act like I had something very important on my phone that was taking all of my attention, but I was having an intense battle in my head. When Twenty-Four Weeker Mom said that she’d learned that one in seven babies is born before thirty-seven weeks, I wanted to shout out, “Yes, both of mine were early!” And when Twenty-Four Weeker Mom told us all that she’s expecting again, I wanted to hug her and say I know how scary pregnancy after prematurity is.
But I sat there, silent.
If I’d opened my mouth, I would have gone from one of the moms to That Mom. I didn’t want to give Twenty-Four Weeker Mom survivor guilt. I didn’t want to be any different, so I pretended I wasn’t.
For the rest of the class, I was depressed. Depressed I didn’t acknowledge Madeline. Depressed I didn’t tell the Twenty-Four Weeker Mom that successful pregnancies post-prematurity are possible. Depressed that this was one of the first of what will be many similar situations as Annie gets older.
But mostly depressed that I couldn’t chime in with a success story of my own.
I’m so sorry Heather! I also so wish Maddie was out playing with the other 24 weeker as both of you mama’s watched in awe and said “WOW! Look at them now”!!! Life can be so unfair. Sending you a big hug my friend!!! It won’t be long now until you deliver your TERM baby!!! What a day that will be!!!
Above my little boys bed is a walk talk that says “The Angels Danced The Day You Were Born”. I often think of you when I read it as I can just picture Maddie, Jackie, your Aunt & Grandma all dancing with joy as your new baby boy is born….and they won’t be the only ones!!
Take Care My Friend.
Sending you my friendship and much love!! xo
But you do have a success story. Annie is that success story.
If I were to summarize your story, I would say that you have experienced both the bad luck of having problems in your first pregnancy and subsequent ones, but the good luck of learning how to minimize some risks in subsequent pregnancies, and that it sucks it had to be that way, which doesn’t lessen the gratefulness you feel at having had better success later on. Moreover, you’ve learned that for every miracle with a happy ending, not all of them are (that is, Madeline was a miracle, and the short time you had with her was a miracle, though one that ended far too soon). You can acknowledge Madeline’s life without being “that mom”, if you spin the story that way, if that makes sense.
I realize that inside of the situation, it might look different. That the feelings which go with that loss are unthinkably complicated, and hard to separate from the facts. But from an outsider’s perspective, you are not “that mom”, because “that mom” would only focus on the loss part, not on what you gained along that journey, and that is not what you do. Your blog is certainly proof of that!
I asked my Mutti how she felt…I was a 24 week birth. I was 1-7oz. I more tripled my weight and went home on my actual due date in July, 1964. THAT was unheard of back then. I am not sure if it’s a mindset, but my Mutti just did what was necessary and moved on because I survived. She had two more kids, all of us born vaginally. She never focused on the fact that one kid was born prematurely. Ever. But that was her. Three of mine were born 37 and earlier, all healthy. But the baby that didn’t make it is no less in my heart, I just don’t bring him up, often.
It’s nobody’s business what you went through and you don’t have to share it unless you want to. I would suggest trying not to dwell that you kept silent about it. You are making a difference every day with you learned about being a mother to Maddie, to Annie and to the Acrobat and should the time come, maybe you can do more to heighten awareness of premature birth, but for now, your only job is to be the best Mom to your kids!!
That’s it. And you do it well!!
Heather, it is alright to protect yourself, to hold Maddie in your heart if not on the tip of your tongue. She is so special and your love for her eternal. You may not have been ‘That Mom’ in that moment but you were Her mom in that moment, as in every moment.
I want you to know I speak of Maddie often, of the special gorgeous little girl I only knew through this blog but who changed my life in her own way.
Were you denying her? No. You were chosing to keep her to yourself on that day.
You share all of your life with all of us strangers on a daily basis. Sometimes its nice to hold something to yourself, to keep it for yourself, rather than share it.
Those Moms had their own stories of prem to share and you have now heard more stories than before. But part of you can be safe in the knowledge that all you do, the work you do, all that the charity does, is to try and help parents like those ones, and parents like yourself in the situations youve shared.
I’m so sorry, Heather. What an incredibly difficult line you walk. Maybe you’ll have other opportunities to see this mom and share your experiences with her (and tell her about the magnificent Maddie).
You share Maddie and her story through this website and that is HUGE. I’m sorry you were in an uncomfortable situation. Not everyone is able or ready to share like those other mom’s. Your heart is in the right place, and that’s what matters.
It happens, Heather. My mom passed away ten years ago and I still shy away from saying anything in situations like yours. And then I regret it later for not saying anything. It just makes you feel kind of shitty, 1. for being on that side of loss and 2. for not saying anything. I always tell myself that next time I will pipe up and share my story, even if it’s just a little bit. It makes me feel better.
I’m sorry Heather! I echo everyone else’s thoughts that you do such a great job at remembering and celebrating Maddie thru this website and the great work you do in her honor.
((Hugs)) Heather. I can’t imagine. I’ve lost babies due to m/c and I’ve never told anyone except my husband. It’s just too sad for me still. What could of been is still too fresh even though time has passed. Everytime I see Abby Cadabby I think of your girly, and I always will.
I almost didn’t write this comment, because I don’t want to discount how you are feeling or tell you that you are wrong- because you aren’t. Its not fair that you don’t have Maddie in that ballet class too. It isn’t right. She belongs here with her mama.
If words could make it better, and how I wish they could, I would remind you that you have 3 success stories- a full term Acrobat currently kicking away in there, Miss Annie who made it to 35 weeks (if I remember correctly), and your beautiful angel Maddie. She was a success story because she almost didn’t make it so many times but she defied those doctors- the one that told you to terminate and the ones who said she might not ever make it home. She was so brave and strong and gave you and Mike and your families 17 unforgettable and wonderful months that no one can ever take away. She is a success story because she came home, and she lived. And she changed and continues to change so many lives and hearts!
I wish more than anything that she was here with you still. And I wish I could take some of your hurt away. Instead, I’ll send love. And I will always, always remember your precious Maddie.
Yes! This!! ^^^
Yes! I wanted to say that too, but was worried I would say it clumsily.
Heather, you were told how many times that Maddie wouldn’t even get to a viable age when you were pregnant with her. But you did it! She was born premature, but you got her home! That is a success story!
It’s also ok to not always want to talk about it too. It’s not a denial of your first born. I do want to say that since I’ve been reading your blog, I’ve hope I’ve made mothers and fathers who’ve lost little ones feel that they can talk more easily about it without having to be That Mom or Dad, like you called it.
You have already honored and loved your gorgeous, sweet Maddie as much as humanly possible. In fact, I realize that subconsciously I had been thinking that I “knew” Maddie when she was born. But realize now that I learned of your blog from another blog during the first, terrible days of grief. I hope this is not upsetting to you–I’m just trying to articulate that your (and Mike’s) writing has honored Maddie by introducing her to the world. You have been the bravest, sweetest, most loving parents for a child who still shines bright thanks to you.
I’m so sorry you had such an upsetting experience–I would have felt so sad and anxious if I had been in your shoes during that experience. Remember that you DO acknowledge Madeline every day, and publicly, through this blog, Friends of Maddie, your support of March of Dimes, and your amazing, brave speech that you post every year about prematurity. You have been doing the amazingly difficult work that has made it possible for people to talk openly about the problem of prematurity. There’s no reason why you should have to do that work in an personal setting, when you’re caught off-guard, and when you aren’t intimate friends with these women. Your intense emotions and grief about the issue of prematurity motivate your activism–with deliberate planning and respect to what you can take, emotionally. It makes sense to me that those intense emotions also make it safer for you to sit out on a surprise conversation about premature babies.
Amy Collen says:
Sweet Heather. I think sometimes just because we think of things inside our head means that it will be fact. Honestly, I think if you had mentioned Madeline, talked about her, those ladies would have rallied around you. People have good intentions. All of us know Madeline now thanks to you and we have all been in various situations in our lives whether we have children, don’t have children, or children that have passed away.
I wish I could tell you to never feel guilty for not wanting to share Madeline’s story at that moment or any moment. You didn’t know these ladies very well and didn’t feel comfortable sharing. However, then you came back to us and told us everything. It is not a question of who you tell and don’t tell. It is a matter of how Madeline’s life has effected you and all of us. You have done SO much to honor your Madeline. You have learned to cherish life and not take anything for granted and that is so so important. I have learned that lesson now too. So try not to feel guilty, my friend. Madeline is your baby and will always be your baby. You have every right to share her story or not but not sharing her story at a moment in time will never ever diminish her memory or her life.
I am sad for you. I so wish you had your beautiful adorable Maddie with you still. I had 5 miscarriages (nowhere NEAR the same in my head as losing Maddie) — but I did feel a bit of a sting every time someone reminded me how lucky I am to have my three children. I know I’m lucky. And I know that you know you are lucky. But sometimes don’t you want to just bury your head right in the sand? It seems there are never any easy answers about this stuff. I really admire the way you navigate these waters.
I so wish you could share Maddie’s victory story too. I wish that none of us had to live in a world without our child/children. Sending you hugs and hope. xoxo
What does the success mean? What make people successful? Do you think the people who live long lives are successful and also their parents? You read the news and also see on the TV that so many people are making wrong choices so their lives are in big danger and also for their parents it’s quite painful. Are they successful? Maddie lived very short life but you gave her the most amazing gift “your love’ and that made Maddie happy and kind! You told us how much she loved to share her things and also we always see her happy photos. It reflects how much she was loved and cared and that really made you very successful mom! You don’t have control over some incidents and its happening everyday so please don’t feel sad and don’t regret. It was not your fault that your body could not hold her long when she was inside you. The medical discoveries are finding new things everyday that people did not know few years ago! Stay happy and you are a very good mom! Annie and acrobat are so lucky!
Wish I could find the right words to say without being ‘that mom’, You have an amazing story to tell. I don’t say much about our loss or about the battles we deal with every day with our two sons and their medical issues in fear of being ‘that mom’. So many times I have kept my mouth silent and wished I hadn’t. Please let everyone know your amazing story…those stories help bring awareness and could possibly bring comfort to a struggling parent.
Heather, I am a regular reader of your blog, though I rarely comment. This post, however, hits so close to home for me. I am 24 years old, my daughter Emilie was born at 24 weeks; I unfortunately do not have a success story either. I am always struggling with what to say in such situations. I write and occasionally read poetry, and almost all the poetry I write concerns my daughter or my feelings of loss and pain in regards to my daughter. Last night, after I read a poem to my Emilie, an older lady stopped me on the way out. She asked me how old my daughter is.. I was silent. Those questions, they take my breath away. I forget that they are normal questions that normal people ask. But still, they take my breath away. I always struggle to find the words to say what I WANT to say. I struggle with the decision to tell the truth, what really happened, or to answer as vaguely as possible. And in the end, I am usually riddled with guilt about not acknowledging or “properly” honoring the memory of my baby girl. So, I just wanted to say, I get it. You are not alone. Sending love to you and your beautiful family from NM!
You have four success stories. This site makes it evident that you, your husband, and family have loved and continued to love all four of your children. I definitely believe that a loved existence on this earth, be it one that lasts 90 years or one that doesn’t make it out of the womb, is a success.
I know these words can’t make you magically feel better, but those are my sentiments.
Oh Heather – you said it yourself in your speech at The March of Dimes – Maddie’s story IS a success story – because she came home and she lived! And though her life was short – it was a beautiful one filled with more love in her 18 momnths than many children have in a lifetime. But I know what you meant – you wanted your little success story running around playing at that moment, and it’s just so unfair and cruel that she is not. You did NOT deny Maddie – the fact that you get out of bed every day and put one foot in front of the other is more acknowledgement than you realize – you honor her every day by chosing to live, to cherish life. When it would be so easy to say “Enough!” and just hide for the rest of your life – you honor your sweet girl by living – and by making others aware. By the work you do for Friends of Maddie and The March of Dimes. You honor all your children, every day.
So many of us who follow your blog, are ‘that mom’. Moms who have given birth to preemies, some that have survived and thrived and others who live in our hearts. It’s a delicate balance to share our losses and grief. Just last week my twin son that survived met with his new food therapist, who is in her last month of pregnancy. As she questioned my son’s health history she asked why he was born early, and as I told my twin’s story the loss of one and the survival of the other, I watched as she moved her notepad from her lap to her desk so she could hold her belly with her left hand and take notes. She didn’t let go of it during the rest of the conversation. You do a wonderful job of honoring Maddie, each of us who read your blog know that, and you have been an encouragement to me as I find the balance as being a mom of a preemies.
I know what you mean about being “that mom.” But sometimes keeping silent is a way to protect your heart, and to protect Maddie, too. Because she was and is so much more than her sudden loss, and that is almost impossible to explain to a group of casual acquaintances like that.
Thinking of you, and wishing she was here.
Every single time I see Josie Duggar on 19 kids and counting, I marvel at her (she was born 16 wks premature). Then I think of maddie and feel so terrible for you guys. I see Josie traveling to all these different countries, living with so many other germ-filled little ones and I wish maddie could’ve been as healthy as her. It breaks my heart. I donate to march of dimes every year for maddie. I was also a preemie but only 4 weeks. Wish things could’ve been so different for you guys. My heart really goes out to you.
Leigh Elliott says:
Your post gave me chills as I read it. I could imagine how hard it was to sit there and listen. I don’t have words of wisdom, just support and so much empathy. I can only also imagine the strength it took to try to maintain your composure through it all.
Maddie’s life is celebrated and acknowledged every day through the work that you and Mike and your family and friends do for March of Dimes and Friends of Maddie, not to mention the many loving tributes made here for Maddie on a constant basis.
She is known and she is remembered.
It’s a good reminder to be careful in those kind of conversations. It’s easy to chime in with your own story and not think about the stories that aren’t being told.
Christina Bathan says:
I am guessing that some of those parents know who you are and know of your page, and I thank God had the good sense to bite their tongues and keep quite about it. and yes maybe when you left, whispered your name and Maddies, and you now have a few more readers, which on one hand is great, you are spreading the word, that yes their is a life after the loss of a child, although your heart hurts daily, you can take a step forward, and smile, and breath, and hurt, and cry and know that today you made a difference, somehow some where…. I will tell you exactly how you helped our family, I never have before, and wont again, but I think now is the time, when I got pregnant with my 4th son, is was 33 due in August, in May my water broke while I was at work, i had just recieved a promotion, was doing good and boom, I had stood up to help out one of my team, and heard a pop and thought I had wet my pants, I worked at Countrywide in Simi on the hill, the main office, I called the hospital and they said come in, called my husband who was working near by, he came, security, was laughable, stating he was trained in child bkrth and would deliver if needed, yeah he got that look. security formed a line so my husband could walk up the stairs to get me but prevented anyone else from moving in the building. i was driven to panorama city then taken via ambulance to woodland hills, Kaiser to a level 4 nicu, I was scared like crazy there was no Heather, No Maddie, and in AOL Chat room no one knew what I was going through, a former coworker of my husbands had a premature daughter, they brought him dinner, she brought her daughter, but me not knowing her wasnt comfortable in asking those questions I had running in my mind. I was able to keep him in till June I had a 27.6 weeker at 3.5lbs. and again I was scared, there was nothing there for me to grasp. I was mad, and jealous, my sister had a healthy boy 18 days before, and grandma kept compareing them well he does this…. and he does this now… and it hurt me to think my son wasnt where he should be, of course not he wasnt supposed to be here yet….. he is now a healthy 8 year old, he is Autistic, but high functioning….. now fast forward to almost 3 years ago, my sister was pregnant with twins, and her OB/GYN was No Dr Risky, no more like Dr needed a kick in the head, she went through so much to have her babies, and at every turn was told neither of them would survive, blah blah blah, she got toxcimia and was hospitalized at loma linda, and it was deemed they needed to take the twins at 27 weeks. Evan was born first at 3.7lbs and his brother Christian was born at 1.6 lbs. Christian made the ultimate choice to give his all to his brother via twin to twin transfusion, and after 36 minutes became an angel to watch over him. I had a few days before stumbled on Maddies story, I couldnt tell yu how I did it, cant remember even now, but read from day one to the end in one sitting, called my brother in law and he did one night begining to end. it helpped him to understand what was happening, it helpeed him be a better husband,and a better father while Evan was in the hospital, necause he understood….. My whole point of this is that you make people understand, that yes, life deals a crappy hand, sometimes, but you can move forward while never forgetting. we marched last year in a sea of purple and it was amazing to see.
I think what “Mommy” said above was so well stated…I couldn’t put it any better.
But I wanted to add my own love to you. And assure you that you didn’t betray or deny Maddie–you carry her presence with you everywhere you go.
I’m wondering why none of the other ladies didn’t notice your sudden silence…I’d like to think that had I (or any of your other readers for that matter) had been in that situation, I would have noticed that sudden silence and quietly pulled you away to talk (if you had wanted to). Being the auntie to a nephew who died at birth, as well as being friends with several people who have lost their babies due to various reasons (CHDs, prematurity, and stillbirth), I hope I would notice that someone else was really hurting. And I, for one wouldn’t have cared if you had spoken up and been “That Mom”–the brave mom who saw her daughter overcome so many odds against her due to prematurity, who lit up any room she was in…the mom who herself has bravely put one foot in front of the other along this path called Grief, continuing to love, honor, and grieve her Maddie while also giving a full life & love to her Annie and her Acrobat (because we all know that love & fullness of life starts the minute you knew you were pregnant with him & began fighting to give him the best chance possible!).
(If hearing your story depressed someone, then that’s their problem–because your story is a story of Love, Life, Heartbreak, and Hope all jumbled into one and I for one find it inspiring–sad, yes, horribly sad, but equally inspiring!)
I love and admire you, Heather Spohr because you are That Incredible Mom.
lauren goldner says:
you acknowledge maddie every day. Period. Do you need to tell your story to a group of people to do that NO. It’s private you have a right to keep it so. If you want to one day when you feel up to it, you can have a conversation with anyone in that group you choose about it. You can always revist the conversation, people love to talk about things like that. But you did not say something for a reason. You did not want to at the moment. And that is FINE.
On Visiting the Grave of My Stillborn Little Girl
by Elizabeth Gaskell
Sunday July 4th 1836
I made a vow within my soul, O Child,
When thou wert laid beside my weary heart,
With marks of death on every tender part
That, if in time a living infant smiled,
Winning my ear with gentle sounds of love
In sunshine of such joy, I still would save
A green rest for thy memory, O Dove!
And oft times visit thy small, nameless grave.
Thee have I not forgot, my firstborn, though
Whose eyes ne’er opened to my wistful gaze,
Whose sufferings stamped with pain thy little brow;
I think of thee in these far happier days,
And thou, my child, from thy bright heaven see
How well I keep my faithful vow to thee.
Heather, God bless you and your family.
I absolutely identify with what you’re saying. I know it had to hurt you not to acknowledge Maddie, but it was a selfless kindness to the other mothers for exactly the reasons you described. I wish we all had happy stories of children who didn’t just survive, but who are thriving and healthy. But we don’t… And I cannot express how sorry I am that your little light is no longer in this world. But I know one thing will always be true… Love never dies. Big big hugs to you and your family.