At the end of last month, I wrote an entry about one of my little brothers and I wanted to share it here with other Pranksters. Normally this is not the type of stuff I share, so getting it down was pretty difficult. I knew if I didn’t do it, it would eat at me until I did. So here it is…
I was at a loss for words, which rarely happens, so I got my son (The Boy) ready for an outing. Which means I handed The Boy off, informing my husband (Gadget Guy) that he needed to take a break, so I didn’t go outside smelling like a gym shoe.
Given the promptness of Gadget Guy’s willingness, I must have smelled pretty bad.
Once I got cleaned up, changed a massive poopy diaper, and got in the car, I decided to go to the mall. I had to take my wedding rings to get cleaned and decided that walking the mall would be as thought-provoking as anything else. Plus, it’s still reaching the low 100′s here in the afternoon, so outside was not an option.
Normally, the mall provides lots of things for me think about: obnoxious teens, people who touch my child without asking, panic attacks in the elevator, using the family bathroom, and the list could go on.
However, this is what caught my attention:
It’s an ornament. I found it in Hallmark.
And this little thing was enough to make me start crying. I was bawling like a baby in the middle of the Hallmark store. My son, who is a 5-month old baby, looked at me like I was a crazy person and the Hallmark lady asked if I was okay.
I muttered something about stubbing my toe, picked up the ornament and paid for it. Then, I high-tailed it out of the mall, as to not make a bigger spectacle of myself. I’m sure you’re wondering how this tiny replica of a 1939 musical fantasy character made me break down like I did.
Sit tight, because I may not make a whole lot of sense here, as I’m already getting teary-eyed at the thought.
I’m the oldest of four children. I have/had two brothers and a sister. I say “had” because one of them died.
Little Brother #1 wasn’t even the one we thought we would lose, but Little Brother #2′s story will have to be shared another day.
Little Brother #1 was a little over two years younger than I was. We grew up together and were bestest friends until we hit puberty. Then we fought, argued and generally didn’t get along. All fairly normal sibling rivalry.
When I went off to college, things between the two of us improved. We appreciated each other a bit more and decided we just needed to agree to disagree and move on.
For the most part, this worked.
Little Brother #2 did things in his own time and in his own way. He had severe ADHD and at 14, decided not to take medication to treat it anymore. He graduated a year later from high school, didn’t go to college, and was (medically) discharged from the Navy. He bounced from one job to another. We were complete opposites in most of those regards, and I had a hard time relating to him.
And he always had a difficult time in social situations which was particularly hard on him. He was a friend to a lot of people, but didn’t have a lot of friends. He was easily taken advantage of. I didn’t understand why he would give so much of himself to other people when they didn’t give him the same in return.
He did excel in dramatics. He was one of the youngest students ever to be inducted to the Thespians Cub when he was in high school. He wasn’t cast often, but tried out for every play and he became the go-to guy for backstage production, lighting, and set design.
People referred to him as Tin Man. I’m not sure where the nickname came from, but he wore it proudly. He had it put on his Letterman jacket instead of his name. It was on his track jersey, the back of his drama t-shirts, and even on his class ring.
In the beginning of 2007, he died.
He was 21.
He was in a car accident, but it wasn’t drugs or alcohol, thankfully. He fell asleep at the wheel and rolled his car.
If there was anything fortunate about his death, it was that no one else was involved, and the freeway was completely empty when it happened. He was pronounced Dead On Arrival. The Medical Examiner said that it would have been quick and that he hadn’t suffered. I HAVE to believe that. I can’t believe that he sat in pain, I just can’t.
My parents didn’t handle it well. I stepped up to take control of things where they couldn’t. Gadget Guy was a live saver and helped support me while I tried to support them.
Little Brother #2′s funeral was epic. There were almost 400 people in attendance. It was amazing to see the sheer number of people crammed into the small chapel as I gave his eulogy. And after the burial we had a huge party in his honor.
In the end, all those people that my brother was a friend to came to say goodbye.
To honor his memory, and celebrate the one thing he loved the most, my parents had “Tin Man” engraved under his name on his headstone.
Now, I can’t watch the Wizard of Oz without crying. I can’t even look at an image of the tin man without choking up.
That is why I was bawling in the middle of the Hallmark. I didn’t even keep the ornament.
Today, we remember the children we’ve loved and lost. We have been through the unthinkable; we’ve had to bury their children. It goes against nature: parents should never outlive their children.
Today, we remember the souls we’ve lost and the ways our lives have changed because we knew them at all. We remember the pain and horror we live with each day without them. We remember the love we shared.
Nolan “Shepherd,” stillborn at 17 weeks on September 15, 2009.
Amanda’s Baby:
Jamie, 4/6/2010
Angie’s Daughter:
Madeleine Rose, stillborn July 7, 2009 due to incompetent cervix and uterine infection.
Ann’s Son:
Orion, stillborn May 8, 2004
Beka’s Son:
Benjamin, September 4, 2012, stillbirth.
Beryl’s Daughter:
Bella Rose, stillborn on September 9, 2009.
Brenda’s Son:
Emerson Allen Behrends, July 10, 2001, stillborn.
Danielle’s Baby:
Micah Rachel
Debbie’s Son:
Jonathan Edward, June 4, 1992, stillborn.
Debbie And Jeff’s Daughter:
Chloe Eva, September 12, 2008, stillbirth.
Heather and David’s Daughter:
Clara Edith, July 1, 2012, Stillbirth at 42 weeks, 3 days due to meconium aspiration and uterine infection.
Jill and Mark’s Baby:
Haven, November 26, 2003, stillborn at 38 weeks gestation
Jolene’s Daughter:
Ruth, January 3, 2013, stillbirth
Leslie’s Son:
Cullen Liam, born still September 11, 2010.
Lilla and Gareth’s daughter:
Pippa, born still on February 13, 2011 from listeria infection.
Lillie Belle:
Stillborn, born still 2017
Lisa’s Daughter:
Kaitlyn Grace, stillborn, born still, May 13, 1995.
Louise and Joseph’s Baby:
Alice Mathelin, born still on February 25, 2011, at 36 weeks and 5 days from Abruptio Placentae
Martha’s Twin Boys:
Owen died March 8, 2008 because his cord wasn’t properly attached to the placenta.
Joshua died one month later, April 6, 2008 because he couldn’t live without his brother. Both were born still on April 8, 2008.
Melanie’s Daughter:
Summer Lily, born still March 30, 2011.
Mel’s Daughter:
Jordan Ala, stillborn on November 13, 2006.
Melissa’s Twins:
Nicholas Aaron and Nathan Alexander, June 9, 2000, stillbirth
Nikki’s Son:
Sam, 1997, intrauterine fetal demise
Sarah’s Daughter:
Audrey Elizabeth, August 7, 1998, born still.
Selah Mae: born January 22, 2002, stillborn.
Stephanie’s Son:
Carter Austin Ross, March 18, 2006, stillbirth due to an umbilical cord anomaly.
TiaMaria’s Daughter:
Isabella-Rose Elizabeth, October 12, 2009, stillbirth.
Tristyn’s Babies:
Miscarriage A: 10/31/2016
Miscarriage B: 12/25/2016
These were very wanted babies conceived after months and months of trying. I started to think maybe my body was broken. When I got pregnant again a year later, I was consumed by anxiety.
Prematurity:
Amy and James’s Babies:
Jacob Bennett born and died on July 11, 2007 due to premature rupture of membranes (PROM).
Samantha Lauren born August 16, 2011 at 23.5 weeks passed away September 17th due to extreme prematurity and fungal meningitis.
Baby Helen: Born July, 1993. Passed from prematurity.
Celeste’s Son:
Christopher Robin Cote: Born September 25, 2009. Stillborn due to premature rupture of membranes and incompetent cervix.
Chantel’s Daughter:
Emily, prematurity born 19w 5 days – was too small for the equipment.
Christine’s Son:
Jellybean, born at 5:20 April 15th, 2009; and passed just four short hours later in her arms.
Heather and Aaron’s Son:
Aodin R. Hurd, October 7, 2007, born still due to premature rupture of the membranes.
Jenn’s Son:
Kevin William, prematurity, 2005
Kate’s Babies:
Baby S, March 2008, Miscarriage
Evie, December 14, 2009, Triplet Prematurity
Jack, December 22, 2009, Triplet Stillbirth due to Prematurity
Will, January 13, 2010, Triplet Prematurity
Baby M, May 2010, Miscarriage
Kristin’s Baby (Mama KK):
Ariel Grace, born on July 28, 2009 at 18 weeks 5 days. Lived 5 minutes.
Leleisme’s Babies:
Ayla and Juliet, October 20, 2009 at 20 weeks.
Bayli and Thomas on June 8, 2011 at 21 weeks 2 days.
Matthew Chase Sims:
April 25th, 2006 due to prematurity.
Melissa’s Son:
Born at 21 weeks in June 2011 due to a bacterial infection, lived for 30 minutes.
Melissa’s Daughter:
Hope, 1993
Nicky’s Son:
Samuel, August 8, 2001, prematurity.
Nina’s Son:
Coleman Parker Garibay, September 14, 2005, lost at 6 months gestation and passed from prematurity.
Paula’s Baby:
Reya, September 18 2011, Prematurity due to extreme Pre-eclempsia
Qudija’s Babies
Mikel Azariah and Willamina Azaria born August 12, 2019.
Mikel was stillborn,
Willamina was premature at 22 weeks 6 days
S & T’s Son:
William, November 2, 2013, 24 weeks, 3 days, prematurity
Vickie’s Son:
Collin, complications from prematurity, 2009
Yvette’s Son:
Erik Richard, July 29, 1981, prematurity.
Birth Defects:
Aaron and Kristine’s Son:
Luke Ervin Seitz, born July 21, 2011 with Hypoplastic Left Heart Syndrome, and passed on June 28, 2011.
Liberty Ann born March 30, 2011 and died on April 19, 2011.
Amy’s Babies:
Mateo, Anthony, and Ian born on May 6, 2008 at 23 weeks and 3 days.
Mateo was born still.
Anthony passed away from Transposition of the Great Vessels.
Ian passed away after a short stay in the NICU.
Amy’s Babies:
Nathaniel James, August 24, 2001 – August 29, 2001, Citrullinemia
David Henry, May 11, 2010 – January 24, 2011, Citrullinemia, passed away after becoming sick post liver transplant
Baby Khalil,:
born August 14, 2009, stillborn, born still from birth defects.
Baby Kober
Kyle William Kober July 22, 1994 due to Hypoplastic left ventricle syndrome
Beth’sSon:
Ethan Connor Brockwell, May 3, 2006 – August 17, 2006. Born with Hypoplastic Left Heart Syndrome.
Christopher:
November 4, 1979, due to pulmonary atresia, a congenital heart defect.
Christopher’s Son:
Aidan, born with brain malformation on December 16, 2008 and passed on December 19, 2008.
Cora Mae McCormick:
November 30, 2009 to December 6, 2009 from a congenital heart defect.
Ellen’s Son:
Shane Michael, born October 10, 1971 and died October 11, 1971 from heart complications before his mother could wake from anesthesia. She never saw or held him.
Julie’s Daughter:
Brianna Elizabeth, born January 29, 1998 and died March 7, 1998 from a heart defect.
Kathryn’s Son:
Seth Douglas Bonnett, Our Little “Tough guy”, March 27, 2008 – October 12, 2008. Died from Hypoplastic Left Heart Syndrome.
Raquel’s Son:
Austin Skylar Gregory, born July 3, 2005 and gained his wings August 29, 2005 from Multiple Complex Congenital Heart Defects.
Ruth’s Son:
Corbin Walker, born February 20, 2011 and died May 17, 2011 from heart defects brought on by Williams Syndrome.
Shannon’s Baby:
Chloe Walker, born November 29, 2000 and died June 4, 2001 from multiple congenital heart defects and heterotaxy.
Suzy’s Son:
Starbaby, born still February 2008 due to Trisomy 18.
Venita’s Son:
Matthew Connor – February 26, 2005, born at 26 weeks, passed from Necrotizing Enterocolitis (NEC).
Wendy’s Baby:
Reed Allyvion Miners, passed away July 5th 2003 at one hour old from Primary Myocardial Disease, a congenital heart defect.
Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
Amy’s Baby:
Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Claudia’s Son:
Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
April’s Daughter:
Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
Colleen’s Babies:
Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
Jessica and Mark’s Daughter:
Hadley Jane, born October 9, 2001 and died October 11, 2007.
Jenny’s Daughter:
Addison Leah, June 13, 2008, accidental death.
Julie’s Babies:
Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
Lanie’s Sons:
Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
Leslie’s Son:
Cullen, September 11, 2010, stillbirth.
Matthew Dickey:
He passed March 20, 1997 from a nocturnal seizure and suffocated to death.
From his mother: “Matthew was a beautiful soul. A loving and caring human being.”
Mindy’s Son:
Brian Vitale, accidental death, September 4, 2007 – June 3, 2010.
From his mother: We miss him more and more each day.
Nancy’s Son:
Patrick, born April 10, 1977, Adoption
Pharon’s Daughter:
Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
Stephanie’s Daughter:
Katy passed on November 27, 2017 from leukemia.
From her mother: Katy was only 31 when she died, leaving us to raise her sweet 10-yr old daughter, Rae. She was a spirited, friendly soul.
Suzie’s Son:
Nathan Michael King, died from SIDS November 2008.
Vanessa’s Daughter:
Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
Fourteen and a half years ago, our lives changed forever.
We had already suspected that something was not quite right with Anna. She had stopped nursing after a few days. I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding. She did well with that for a few days, but then it seemed like a challenge just to get her to drink an ounce. We called the nurses on the maternity floor where she was born and were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.
I was still worried, but we had our first postnatal pediatrician appointment the next day (July 25), so I knew we would get answers then.
In the meantime, I received a phone call from someone from the state of Michigan. I’m not sure – my memories of that are vague. I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn to confirm it.
I was concerned, but still focused on our doctor’s visit.
When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors.
I guess she wasn’t sure how I would react to what she would tell me next.
When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD), it was very serious, and she was very sick. T
he only specialist in the state who saw patients was located at University of Michigan: we were expected down there and we needed to leave as soon as possible. I remember that her southern accent was soothing and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog. I didn’t understand… Anna was born healthy. Both of her Apgar scores were 9. That meant we were supposed to live happily ever after.
Right?
Right???
At the time, Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch. And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.
After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.
On the drive to U of M I poured over my “What to Expect” book. MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.
When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell. He then took a swab of her earwax for them to smell. We were completely flabbergasted… what did he think he was doing?
We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.
You see, there were signs that Anna had MSUD, but we never picked up on them.
She had a very high-pitched, shrill cry, but we joked that she’d sing opera someday. By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over. We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.
We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good.And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.
By the time we were in PICU, she had an IV in her scalp because she was so dehydrated that it was the only blood vessel they could use. She had an NG tube giving her nutrition. She was hooked up to heart monitors and pulse-ox monitors. She looked so tiny and helpless there in the bed. We’d never felt so helpless as parents as we did then.
That day is one of the few times I’ve seen my husband break down and sob.
What information we were given about MSUD over the past few days was overwhelming. Most of the official definitions included two very frightening likely outcomes: mental retardation and death.
The prospect of having a child with a restricted low-protein diet was daunting as well. Would we need to become vegetarians, too? If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? Those fears seem so trivial now, but they were so real to us then.
Over the next two weeks, Anna got stronger.
After she got out of the PICU, she was moved to a regular room. After she regained some weight and was able to take feedings by bottle, we were able to come home.
She was sent home with the NG tube, as she was still taking about a quarter of her formula that way. Shortly after we got home from the hospital, she grabbed the NG tube and pulled it out, flinging stomach acid all over me. I should have known then that it would serve as foreshadowing for how the next thirteen years would go!
Thankfully, we were able to remove the tube after a week.
As I think back to those days, I also look ahead to what faces us.
When it comes time for her liver transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers. The big difference will be that this time, we will be filled with hope.
Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past 14 years.
I know that he’s ashamed of it and that makes me ashamed of him. He should advocate for all men out there who suffer silently through infertility, but he won’t, and I won’t “should” on him.
I know that I’ll NEVER do another round of infertility treatments because they make me crazy and hurt like hell.
I’m a wreck while on the drugs and a wreck when they don’t work.
I know I had at least one egg welcome donor sperm into her secret chamber and try to dig into my lining and hold on.
I know that the drugs made my lining extra thin so that her little grippers might as well have been coated in oil.
I know that the first pregnancy test came back MAYBE, as did the second.
She was a freaking PRO at latching-on, and breastfeeding went spectacularly. My recently-born third child is also proving himself to be quite the little breastfeeding champ.
My second child? Not so much. He couldn’t get the hang of latching-on, even with special equipment, like those freaky-looking nipple shields.
The stress of a cross-country move three weeks postpartum, moving in with my in-laws, while my husband had to take an extended job out-of-state (he spent eight months of my son’s first year out-of-state), my supply of breastmilk steadily decreased.
I was too poor to get a decent breast pump, we were in-between insurance, which meant that pumping my breasts to keep up my breastmilk supply was not an option.
Multiple lactation consultants and doctors were seen – no success. We began supplementing with formula, and while he was still a colicky baby, he was a little happier as he wasn’t hungry anymore.
I went on medication for postpartum depression when he was a few months old. That officially brought an end to our breastfeeding journey.
I spent several years working through the guilt of being unable to continue with breastfeeding. Every asthma attack he had triggered that guilt. When he developed speech problems, I worried that his difficulty speaking was related to not bonding through breastfeeding, or because I had postpartum depression.
Fast-forward to this past February as my four-year old climbed into the dentist’s chair for his first visit to the dentist.
As she was checking out his teeth, the dentist asked, “Does he ever have trouble with his speech?”
Startled, I told her, “Not really. He had a little trouble when he first started, but his last evaluation was good.”
While poking around in his mouth, she said, “Oh, good. I see that he’s tongue-tied. Not badly, borderline even, but sometimes makes it hard for children to learn to speak.”
I’m not sure what I said in return, because my mind was already jumping – tongue-tied. His frenulum is short, so his tongue’s movement is restricted. Not only can it cause problems with speech, having a tongue-tie can make breastfeeding and latching on difficult.
And just like that, all those feelings of guilt rushed back.
All the doctors and consultants that we had seen – not one had caught that he’d been tongue-tied. A tongue-tie is easily correctable. The frenulum is clipped and, tada, the tongue can move more freely.
Logically, I know that we’d still have had other hurdles to overcome to be able to breastfeed successfully. I know that he’s a smart, (more-or-less) healthy little boy, who wasn’t negatively impacted by being formula fed. I know that, given all the circumstances, formula was the best option for ALL of us. I know that he and I are no less bonded together because his food came from a silicone nipple instead of my own.
But my heart is less practical.
My heart is grieving that loss; that missed opportunity all over again.
