{ Sip & Chat }


THESE ARE SOME AMATEUR INTERVIEWS I’VE GIVEN TO EXTRAORDINARY PEOPLE WHO HAVE INSPIRED ME IN SOME WAY.  CHEERS TO CREATIVITY, PERSEVERANCE, DETERMINATION, INDIVIDUALITY AND TO LETTING OUR SOULS DO THE SPEAKING; GRAP A DRINK AND ENJOY.  


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A Storie Worth Knowing

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lola1


Shannon was my college roommate up at WWU freshman year, gosh, almost fifteen years ago!  Memories of steamed rice eaten out of the rice cooker at midnight and cheap white wine by the jug in our *TINY* dorm room fill my mind.  So much fun we had, and a year in my life I would go back to in a heartbeat.  

You’ll see the bits of fun and charisma in her writing that I see in her as a friend.  

She now lives in Minnesota with her husband and two beautiful daughters.  

I believe her story of Motherhood is amazing. No, it’s more than that.

Grab your favorite drink, have a second one ready, and please take the time to read her Mama Memoir below.  You will be a changed person — a better person — a more understanding person — a better friend —  perhaps even a better Mom.  I promise.   

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SO, TO START OUR SIP&CHAT, WHAT ARE YOU DRINKING RIGHT NOW?

Coffee!  With real cream! 


I ONLY KNOW BITS AND PIECES OF YOUR STORY, THE BITS THAT WE COULD SHARE IN THOSE RARE 30 MINUTES ON THE PHONE THAT OUR LIVES AS MAMAS WOULD ALLOW FOR.  BUT I’D LIKE FOR YOU TO START JUST BY GIVING A NARRATIVE OF YOUR INTRODUCTION TO MOTHERHOOD.    

T.Ryan and I had just taken a BIG trip to Africa, this was to be our last {hoorah} before having kids. We climbed Mt. Kilimanjaro, went on a safari and had some relaxing days on the beach. Of course, as soon as we got back, we thought, “Well, let's do ONE MORE big trip before we really try". But as life would have it, I was pregnant a few weeks later ;)

I bled through the whole first trimester, the doctor kept calling it a threatened miscarriage, but Lola held on tight. This was my first wake up call, that first desperate feeling of "I really want this baby". I was so sick and tired (but I had really nice boobs!).

Most of the second trimester was okay, but around 26 weeks I started to bleed, heavily. I had been having contractions for a while, but didn't know it. I went in for an ultrasound: the baby looked alright, but they couldn't figure out what was going on with me. I was put on bedrest for 10 weeks! Ten weeks of days/nights being exactly the same: no excitement for Thanksgiving, my birthday, Christmas, etc.  

People think of bed rest as a vacation, it is not. It is mental torture knowing you can move, but you shouldn't. Feeling that pressure/burden that if you get up just to grab a pen, just to pee, just to grab a snack, that it might be what puts you into pre-term labor, and puts your baby at risk.


My body ached and my muscles atrophied as I got bigger and bigger; but I knew having a baby closer to full term would make our lives easier in the long run. 

Bedrest is very hard on relationships: I was totally dependent on T.Ryan for all meals, cleaning, everything. He was pulling all the weight and I found myself limiting my number of requests because I worried that if I asked for water it would put him over the edge. This was the hardest part for us. In addition to the relationship stress, I used up 10 out of my allotted 12 weeks of maternity leave — just lying on the couch.

When I was 36 weeks along, they let me off of bed rest and I begged them to take me at work so that I could save those extra two weeks.  I worked a desk job for about 6 hours that day.  I only got up to go to the bathroom, and my water broke as soon as I got home. 

Since I was technically pre-term, they rushed me in, gave me Pitocin and I had a terribly long and painful natural childbirth. I had such bad tearing up through the birth canal that I was rushed to the operating room to be sewn up. 

Little did I know that in the four hours I was gone/in recovery, Lola was taken to special care and was having trouble breathing and eating. Since I was still on a gurney, having had a full spinal block for my operation, I couldn't fit into special care. This meant that I wasn't allowed to even see my baby! My Master Negotiator Husband convinced the head special care nurse that she HAD to bring me my baby, just for a few minutes. 

So on New Years Eve, 

right before the ball dropped, 

totally drugged up, 

I got to hold and snuggle my sweet beautiful precious baby girl

I knew she was a bit early, so I was ok with her being monitored and didn't think anything was really wrong. Besides, I was OFF bedrest, and the world was mine!

The next day we started breast feeding training. I had so many nurses and lactation consultants around me, helping with the latch, and the sucking reflex, and grabbing my boobs. It quickly became normal, and soon enough I didn't even care that there were other families/dads in the same room. The little barriers didn't matter anymore … we had so much trouble breast feeding that I was immersed in it. 

Our first hard decision came that night, when we had to decide that it was okay to put a feeding tube in. Lola was having so much trouble eating, and it was exhausting her. They put in a feeding tube, and I was only allowed to hold her when we would work on breast feeding or doing kangaroo care. I wasn't allowed to just pick her up and snuggle her whenever I wanted to. They said she was feeding like a baby that was much more premature, but it was okay, she would grow out of it.

The next day, the nurses started to hear a heart murmur as the pressures inside her little body were starting to regulate outside of my own. After hearing the murmur getting stronger and stronger, they ordered a chest xray and found that her heart was enlarging. Fluid was pooling in her lungs and heart were working extra hard, making it actually enlarge. 

It was still a holiday weekend, so the resident on that night was young and new and not good with her words. She told us at 9pm that our baby had a huge hole in her heart that, without a doubt, would need open heart surgery.

I was trying to breast feed when she broke the news. I was literally shaking and crying, and the nurses had to take Lola away. There were NO further answers, there was NO more information. She assured me we would have answers that Tuesday when the doctor was back from vacation … and of course, she asked me not to google anything … huh? 

On top of this terrible news, I was in so much pain from childbirth and my operation, and I had lost sensation in my bladder/urethra. 

I was literally peeing in my pants as I tried to run to the bathroom, urine running down my pant legs in the open hallway.  

IT WAS AN ALL-TIME LOW.  

The schedule was rigorous: attempt breastfeeding for 30 min, kangaroo care, put baby back on monitors, pump for 20 min, wash pump parts, run to the bathroom, clean pee off my leg, try to force-feed myself, and then come back to start it all over again. { 24:7 }. The nurses finally convinced me that I needed pain meds, and that my baby was okay there without us every night. There is nothing like leaving your baby in the hospital and coming home to a house that is all set up for a baby, and yet you don't have one to bring home. 

I couldn't sleep. T.Ryan would drop me off at the hospital on his way to work, since I was so drugged, and I would spend the day with my baby, working on breast feeding, staring at her, peeing my pants, and being picked up at the end of the day in tears, smelling of urine, not wanting to leave. 

The nurses would call in the middle of the night with reports of changes of status: she needed oxygen tonight, she had three "breathing episodes" where she stopped breathing, she actually fed from a bottle … there were ups and downs. 

And I hated being away, but there wasn't always a bed available for me at the hospital. There were two family rooms that we got to stay in when they were available, and we were able to stay there the two nights before her discharge. On that last night, the nurse brought Lola in, and she didn't have any tubes on her.  She was wearing a little pink outfit, she was alert and kicking and looked so healthy and happy!! It was amazing, I had so yearned to see my baby look this way. After 12 days, Lola was off her feeding tube and stable enough with breast feeding that they finally allowed her to come home. 

We stopped at Children's Hospital on our way home to meet her cardiologist and finally get our questions answered. She would need surgery, but hopefully not for another 6 months. In the meantime, we were to watch for heavy breathing, feeding difficulty and fatigue.

 … we were home for two nights … 

We were giving Lola a bottle like we were supposed to do with every other feeding to monitor intake, and I just had a BAD feeling. She wasn't eating well, and was super sleepy. I could barely arouse her with all the tricks. Now that I have another baby, I know that most infants are this way … but I had that bad Momma feeling that something was wrong. It was Saturday night, so we would be paying $100 to go to the ER. T.Ryan and I sat and deliberated, and I literally couldn't explain to him what my gut was telling me, but I just told him we had to go. I'm not a doctor-goer and he knows this, so he was surprised at my persistence.

This was my intro to life as a hospital mom. 

It's hard to watch your child suffer, but even harder to be the one who has to pin them down while they look you in the eye like you are trying to hurt them. 

I had to hold her down for blood draws, starting an IV in her little 5 lb body (multiple tries), for catheterization, for an echo cardiogram, for X-rays … it felt like it was never ending. I think we were both crying. 

The cardiologist on call came down to let us know that Lola was in severe heart failure and it was a good thing we brought her in. I patted myself on the back, but at the same time was thinking, how could this be?! I thought it would be more obvious, I thought she would be breathing heavier.  

The doctor said she was breathing quite quickly, but it wasn't anything different from what we were used to seeing with her. They admitted her immediately, put her on a feeding tube, and oxygen, and monitors, and started diuretics to get the fluid off of her lungs. 

The doctor said "she has a HUGE hole in her heart; she is a VERY sick little girl”. 

This was the first we heard that it was that bad.

We hadn't even told our parents yet, because we weren't even sure what was happening, but at this point we decided to tell them. In the meantime, my work was pestering me to come back, my maternity leave was almost over. There was no way to go back to work at this point; yet I was on my own health insurance, and we needed the money. I left tearful messages for HR after hours, letting them know I would get back to them when I could. I had long busy days in the ICU, and couldn't use a cell phone in there anyway.

We always had a 1:1 or 2:1 nurse watching lola in the ICU, so we built strong bonds with them. Lola was the smallest on the floor, under 5 lbs now, so they all loved to hold her in one hand and write their notes with the other. I hated to leave the floor ever, but I knew she was in good hands. 

At this point we had our own room, and a pull out couch, so I slept there every night. Lola's breast milk that she got thru the feeding tube was fortified with straight lipids and formula, she was getting the most number of calories she could possibly get, and still wasn't growing.

Her heart failure was so severe and her little heart was working so hard. The ICU doctor said it was like running a marathon and breathing through a straw. 


The plan was to try to get her to grow before they did surgery; she was so weak and small and still had fluid in her lungs. She was so sick that she didn't do anything; she didn't open her eyes for close to a week!! The nurses would come in and shine a light in her pupils while they held her lids open, so see if she still had the pupillary reflex (brain function). I would sit and watch and cry, afraid to ask. T.Ryan didn't know what they were doing, so he would make small talk and jokes and I just wanted to die. I had that desperate feeling again of "I want my baby! She has to live! I will do anything!” 

Day and night, all I could do was pump

and watch 

and hope 

and pray.

After two weeks, Lola was stable enough on a feeding tube that they felt comfortable sending us home with daily nurse visits. 

I WAS NOT comfortable!! At all. I was scared to death. I didn't sleep and stared at her all day. It was a full time job: filling the feeding tube, changing the tape, keeping it charged, pumping, mixing the lipids, etc.  All the while, T.Ryan was at work, saving vacation time for surgery.

Again, we were home two days, and Lola accidentally pulled out her feeding tube. The nurse came in to replace it, through her nose, and it took her three tries … Lola didn't scream, not even a peep!  While it may seem like a good thing, it wasn't right. She was breathing so hard … I knew it was time to go back.

We were sitting in the clinic adjacent to children's hospital, waiting for our cardiologist to check her. Lola started to gasp for air, and I started to SCREAM for a doctor. Dr. Vezmar had us rushed to the hospital with the warning that they would likely start a breathing tube and once they did that surgery was imminent. 

I was so scared. The escorted walk to the hospital was like an eternity and I thought she was going to stop breathing right in my arms. I knew she was still so small, and needed breath support, but was she strong enough for surgery??


They stabilized her on high flow oxygen in the ICU. I was NOT happy to be back so soon, but was also happy to not be in charge. I didn't like the feeling of being so responsible for her life, and being the one to watch for signs. By that night, they had to sedate and intubate her and put her on a ventilator. This meant the end to my holding her, and there were so many tubes on her, I could barely touch her either. I hated it. They scheduled surgery for the next day, she was an emergent case.

That night, I was sleeping behind a curtain when Lola's vent starting to have issues. The doctors and nurses ended up having to bag ventilate her — for hours. They didn't know if she was the problem or if the vent was the problem. I sat behind the curtain, counting the speed at which they were helping her breath, panicking, not wanting to get in the way … scared to death that she wasn't even going to make it to surgery! 

Thank goodness T.Ryan was there with me that night.

She made it through. 

The next morning we met the surgeon, heard the risks (stroke, death, may need a pacemaker) and said our goodbyes.  We had to sit in a waiting room for 4 hours and wait. It was LONG. We got regular updates from the cardiologist: Her chest is open, she's on bypass, they are operating, the hole was even bigger than we thought, they stitched up two holes, she's off bypass, they are stitching her closed! The surgeon came in to see us after surgery and told us everything had gone well, she made it through, the next 24-48 hours were critical, she needed to stabilize her rhythms, blood pressure, etc. 

I told him I loved him! I still do love him!


Lola

Those next 2 days were terrible. She was on a ventilator and a feeding tube, she had bloody drainage tubes from her stomach, she had central lines and peripheral lines — every inch of her body was taken up by some tube, her room filled with IV poles and monitors. 


All I could do to show my love, was pat her head, kiss her cheeks over the tape that held her tubes on her face, or read her stories. 


Of course, I was still pumping around the clock. I wasn't sleeping and could barely eat, but somehow my body was producing enough milk to supply the whole floor! Too bad they wouldn't let me just give the extra to someone who needed it due to strict restrictions.  

Her blood pressure was so so high, and we worried that she would bust a stitch or have a stroke. There were so many ups and downs during this time period. It's all a blur.

On day #3, after what seemed like an eternity, they were able to wean her off of the vent and put use a nasal canula for oxygen … what this meant was, I got to hold her!!! This was a challenge with all of the wires and poles, but it was heaven!! 

There is nothing like being able to snuggle your baby after you have been so worried and so deprived.

We spent the next week or so working on being stable on room air and feeding … it took longer than we wanted. But she was breathing so much easier, so this time I felt ready when they said we could go home. She had sternal precautions, meaning we had to lift her like a board, couldn't submerge her in water for months (only sponge baths), and she was on a ton of meds.

We arranged for nursing home visits; I did all of her medications (5x/day), mixed up concoctions of formula/lipids/breastmilk/vitamins, and we couldn't leave the house since it was cold/flu season. Being at home was literally a full time job. 

At this point, Lola was 6-7 weeks old. I had not seen the outside world in about 17 weeks. 

My job gave me the ultimatum during Lola's surgery, and I couldn't bare the pressure, so I quit. 

We had no family around and no one to help with her care. She couldn't go to daycare because of the germs. 

We all went on T.Ryan's VERY expensive insurance and quickly worked out a budget that included very minimal money spent each week. Whatever money we had extra went to hospital bills.  

We NEVER went out, NEVER saw a full gas tank, quit our gym, sometimes had internet, and spent $40/week max on groceries. It was totally worth it, and totally do-able, but a big change.

We hibernated for months. We didn't get to go anywhere as a family unit until Lola was 5 months old, and then we went ALL IN and took a trip to Palm Springs! It was heavenly.

The good part about the way our family life started, is that the ONLY way I could ever leave the house, was having T.Ryan fully responsible: for feeds, meds, everything. So he learned right off the bat to be a self sufficient Dad … which I know can take many Dads much longer.

Anyway, that whole year continued to be a roller coaster. Lola kept having these "choking episodes" where she would look at me as if she was suffering/choking/panicking and couldn't breath. It was out of nowhere, not while she was eating or anything. After the third one, we went to the ER and they found that she had terrible reflux and aspiration … she was aspirating fluids into her lungs. So we began thickening all of her formula. I was still allowed to breast feed, but since we couldn't thicken breast milk, I had to throw away an ENTIRE FREEZER FULL of liquid gold. I couldn't donate it because I didn't know if I had had caffeine, ibuprofen, etc.

Eventually, she was put on stronger reflux meds, thickened feeds, and had to sleep upright in a sling in her crib. This was terrible for a baby that was used to sleeping with us or in our arms — due to all the trauma, we spent most nights right next to her.

Lola had been in weekly therapy for months now, she was very week and was developing very slowly. 

At 6 months, she could barely hold her head up. 

At 9 months, she was barely sitting. 

She didn't roll. 

Soon after the last hospitalization, she developed some very strange movements. We were again admitted to the hospital, and she had an EEG and MRI. From what we were describing, her swallowing issues, and her developmental delays they were pretty sure that she had a very rare and progressive childhood form of epilepsy that would leave her with an intellectually disability that would progress with each seizure. 


This is the point where I let go of my dreams. 

This is where I knew that we had been holding out so much hope, but it was time to let go. 

I loved my baby so much and was so happy that she was ALIVE. That was all that mattered at this point. 

I was ready to be the mom that cared for her child FOREVER. 

I was determined to give her whatever she needed: I was ready for more therapy, feeding tubes, a ventilator, whatever it would take to keep her with us. 


I just wanted her to live.


After days of testing, it was again determined that her reflux pain was so bad that it was causing these movements, not a progressive neurological condition.  It was amazing news! She didn't have what they had thought — she was going to be okay — however, we had been in and out of the hospital minimum every two months at this point. We were hospitalized more than kids that had chronic conditions. They were starting to question if there was something else going on. They started to recommend genetic testing.

Lola's 1st birthday was coming up (New Years Eve), and we deserved a party. Things had been stable for 2 months. Our parents flew into town, we invited all of our friends, bought a TON of alcohol, and were ready to ring in the New Year and celebrate Lola's life and health. 

That morning she had a high fever and started to stare off into space. 

She wouldn't track me with her eyes, and wouldn't respond to her name. 

The look on her face was vacant, and she began to turn a dusky/blue color. 

I called 911. 

Soon after she threw up. 

The ambulance took her into the hospital immediately. Her oxygen was super low and her fever super high, we found ourselves in for another long day of holding her down for testing (while this was my 6th time doing this, it never got easier). 

I remained hopeful, asking what time we would discharge so we could get home for her party. At around 3pm, they recommended that we cancel the party, she still needed oxygen. I was so sad. This had become routine this year. Every time we got excited for something or made a big plan, we ended up in the hospital. It was impossible to have a normal life. It was impossible to maintain friendships.

That night, our parents came into the hospital, we had cake, and sang ‘Happy Birthday'. Lola didn't feel well at all. Our family left so they could start a nebulizer treatment to try to clear her lungs. The respiratory therapist and nurse were both in the room starting the treatment, and she got that same vacant stare and turned blue. 

The nurse called a code blue immediately. 

I have never seen so many doctors and nurses in one room. There were ER doctors, respiratory therapists, pediatricians, nurses … roughly 25 of them all in her private room. They were bag venting her, making sure she got steady oxygen, as her levels fell below 50 (they are supposed to be around 100, at least above 90). 

It was an out-of-body experience. 

T.Ryan and I stood there, just staring, and shaking, and watching, as all of these professionals worked on Lola for OVER 45 MINUTES. She was having a seizure that was moving around to different parts of her body and then taking her whole body over. They kept asking if we had seen this before, why she wasn't responding to the meds … we had NO IDEA, and neither did they. 

It was terrifying. All I could think was, 'This is IT, we are going to lose her on her first birthday, there's no way she can recover this time'. 


They couldn't stop the seizing, so they rushed her to the ICU where the plan was to fully sedate her and intubate her for DAYS so that she would stop seizing. A prolongued seizure is a medical emergency and not good on the brain. Of course, there were risks with venting her while she was already having breathing issues due to her illness, whatever the illness was. 

The code blue team ran with her on a huge hospital bed, while bag venting her and monitoring her heart and oxygen. We followed alongside them. I was shaking so badly, I could barely walk. 

We arrived in the ICU and they hooked her up to oxygen and monitors. They started high levels of phenobarbital (anti-seizure med) and were getting ready to ventilate her. 


Suddenly out of nowhere, she made eye contact with me. 

"She's looking at me", I was screaming … she was there! 

She was focusing right on my face. She was with me! 

I told them to stop, give her a minute. 

She stayed focused on me. It was amazing!! 

They weren't going to have to fully sedate and vent her. She stayed in the ICU for monitoring on oxygen, and was on serious doses of anti-seizure meds. That next morning, I woke up to a VERY fussy/drugged baby. I tried to breast feed her in hopes that it would help her relax, but her hands were in funky positions and she was kinda stiff … I was pretty sure she was never going to be the same again.  

We stayed there about a week. We barely saw her eyes for 48 hours, the drugs were so so strong. Eventually there was no more seizure activity and she was weaned off the oxygen. 

We met her neurologist the Tuesday after the holiday weekend. He was a total goof ball and assured us she was going to be just fine. I couldn't stop crying and he gave me a serious lecture about how I had to not pity her or fear her, and that the best thing I could do at that moment in time was just to love her and enjoy her and be FUN.

When we took her home, she was still on a strong dose of medication and slept a lot. I could barely shower, do laundry, or leave the room.  I stared at her all day! I was so scared that she would have a seizure and stop breathing.

It happened again, later that week: she had a seizure and stopped breathing. I called 911 and they rushed her to the hospital for monitoring and adjusting her meds. They had to do another EEG to look for seizure activity … this went on for months. Once a child has more than 3 seizures with no known cause, they term it "epilepsy”. 

Because she stopped breathing when she had seizures, we got an oxygen monitor for her sleep with. There was an incidence in the middle of the night that it went off and she was face down seizing, not breathing. That time the paramedics came and I wasn't wearing any pants … seriously, the things you don't care about in these situations!

There were times that Lola had seizures in the car. I had a HUGE mirror that allowed me to see her face in the rear facing carseat. I barely watched the road. There were times I had to pull her out and put my hazards on and lay her on the side of the road to administer her emergency rectal medication that would pull her out of the seizure. 

Her seizures always required that we call 911 because (1) they were LONG and required medication to stop them and (2) they affected her breathing, and she needed oxygen levels monitored and sometimes oxygen administered. 

We lived like this for almost a year: NO babysitters, NEVER leaving her sight unless she was on a monitor, NO breaks. It was so very stressful. 


I was so afraid of her, I didn't trust her body. I didn't want it to my lack of vigilance that allowed her to die because I wasn't watching her breathing and doing the right thing. 

No one understood this constant stress.


When we had been in the hospital for Lola's first seizure, we had agreed on two things: for the next five years we wouldn't have anymore children — we couldn't handle it; and we wouldn't even talk about me going back to work, she needed me watching her and knowing what to do.  

So of course, the week we got home, we found out I was pregnant!! This caused so much more stress particularly since Lola was still due to undergo genetic testing, which could have implications on our second baby. 

I was eventually put on lifting precautions and since Lola didn't walk (until she was 19 months old) and I was very very pregnant. I HAD to lift Lola. I used to curse my huge belly as I was hovered over Lola, willing her to pull out of a seizure, giving her rectal medication, etc. I had such mixed emotions over this pregnancy. I didn't know how we would survive being in the hospital all the time and how we would manage our constant worry for Lola. We had no family in the area, we had NO babysitters, we had NO help. We also had no answers. Would our other baby have similar issues? Would Lola catch up to other kids? Would she be ok?

***

In the end, we had a healthy full term baby: she turned out to be such a blessing in every way! 

Lola's genetic testing all came out normal. 

She learned to walk and eat and talk and caught up to all the other kids by age 2. 

She still takes anti-seizure meds, but has been seizure free for over a year! She did have two episodes when baby Storie was 6 weeks old...but somehow we made it through that and she has been great ever since. We are giving her little system another year on seizure meds before we test her to see if she needs them long term. 

She continues to aspirate thin liquids, but it is getting better and the hope is that she will also outgrow this. 

Her heart gets check yearly, but it looks great. 

We see the neurologist yearly. 

She is part of a special needs health care clinic, and every time we see her pediatrician she says "I cannot even believe that this is the child that goes along with this chart!”.  It's truly amazing. 

People we meet today in early childhood classes are in shock when I tell them bits of her history. She's small, but proportionate, talks a ton, and appears to be healthy as can be!

I joined a face book group for mom's with kids of special needs in MN. At the time I joined, Lola was one of the most medically unstable children in the group. And now, I'm feeling like I don't even fit in. 

It feels good to be on the outside of this group, but also feels weird, like somehow I escaped something that I shouldn't have or didn't deserve to. 

I know they think I got lucky. 

Now I can join other mainstream groups, and I do fit in. I don't get angry at the normal everyday Mom conversations because their concerns are now the same ones that plague me: potty training, whining, sibling rivalry, etc. 

It's wonderful to have these problems!


IT IS UNREAL TO ME, THAT THIS WHAT YOU WERE GOING THROUGH AS A NEW MOTHER.  AND WHILE I’M NOT SHARING YOUR STORY SO THAT THE REST OF US CAN FEEL BAD OVER OUR INSIGNIFICANT-BY-COMPARISON EARLY MOTHER HOOD STRUGGLES, I DO FEEL IT IS IMPORTANT THAT WE LEARN HOW TO BE MORE EMPATHETIC TOWARD A FELLOW MAMA WHO NEEDS UNDERSTANDING AND SUPPORT DURING SUCH A LONELY, SCARY TIME.  YOU MENTIONED THAT YOUR FRIENDSHIPS SUFFERED DURING THIS TIME: WHAT ADVICE CAN YOU GIVE TO SOMEONE WHO WANTS TO HELP BUT DOESN’T KNOW HOW TO?  

That's a tough one. Like I said above, Storie not sleeping at night taught me so much. That each person’s battles are their battles, their woes are their woes, and that doesn't mean they aren't important. It's all relative. If you don't have to worry about your child dying all the time, you are going to worry about something else. That's human nature, I guess. 

I guess the biggest thing is to be open to someone dealing with this. I wanted my friends to ask questions, to try to understand, to continue to connect with me, even though our Mommy experiences were not the same at all. 

I felt very isolated during this time. 

My friends quit inviting me places, because they "figured I couldn't do anything" or "didn't want to expose Lola to germs" or "were used to me canceling”, and it made it so much harder. I know it was frustrating for everyone … but don't give up on your friends, especially in the hard times. It makes those times so much harder. 

I know a lot of people don't like to broach difficult subjects

— death, disability, illness —  

but I think these are the biggest things we need to become comfortable with. 


Everyone will deal with these tough topics at some point. Life is hard enough when you are going through it, losing friends and having people afraid of your situation is the worst side effect imaginable

I had many friends that constantly said “Man, I wish I could help you, I wish there was something I could do”.  It would have been easier for them to either say nothing or to ask what they could do. To me, it felt very empty, as if they were saying ideally they would like to help me but they couldn't.

Many people assume that family will step in and help you, but that's not always true. I had two amazing friends who worked in healthcare and learned to care for Lola, so T.Ryan and I actually had some alone time together.  It was nerve wracking for all of us, but so good.


What I do tell all moms is that they should know CPR and what to do if your child is choking or not breathing. 

You never know when you will be in a situation to need it. 


Also, have your address written on your cupboard … for babysitters and for yourself. 

They told me this at Children's and it's true: When you call 911 panicked, you will NOT know your address. Write it down. 


Also, know where the nearest children's hospital is, and go there if it's an option. You don't want your child in an adult hospital in an emergency situation.


These situations are just hard. Hard on everyone. We definitely lost touch with friends through it all. But we also strengthened many relationships during this time, too.

I remember when I called one of my best friends when Lola was 5 months old and I was asking her a question about baby sleep, she was ecstatic, “Yay, normal baby talk!”.  It turned out she missed this as much as I did. I think that's the thing, we all want to connect. My best friends missed out on me having a normal experience, almost as much as I missed out on it. I definitely appreciated my friends who checked in, left messages, let me know they hadn't forgotten me, even when I didn't have the time or energy to call back/write back.


YOU MENTIONED THAT THE NEUROLOGIST WAS A “GOOF BALL” … CAN YOU ELABORATE ON THAT? WHAT’S YOUR RELATIONSHIP LIKE WITH HIM NOW?  

He looked like a young cowboy, and he was totally playful. He actually got a smile out of Lola in her drugged state, she woke for 5 minutes and he made her laugh! He said “See, you just need to let go, and BE FUN”. 

At the time, it did kinda feel like it wasn't that easy and that he was too used to seeing these things, but over time it replayed in my head, and it resonated. 

When we first came home, she would smile at me, and I would just burst out in tears. I was so scared of her, of what her body might do next. His words played in my head when my anxiety was taking over. I knew he was right, that all I could do was ENJOY HER and have fun. The rest was out of my control. 

He also gave me the advice that the worst thing I could do was feel sorry for her. He said that parents' sympathy for their children with special needs/disabilities/etc was often the child's biggest weakness, because their parents hold them back from being happy and carefree and being everything they have the potential to be. 

His pep talks helped me through a lot of crazy times. 

On the flip side, he scared the crap out of me when we came in after the third seizure, each one with breathing issues...his concern freaked me out, because I was so used to him being so carefree. He said that unfortunately we did need to worry about Lola more than he first thought. But I knew I could trust him.

That's another point in all of this. I don't know if I mentioned how lucky we are in the doctor department. Lola's cardiologist is also amazing!  He sat and watched me cry every single day, passing me tissues, answering my same questions over and over, making me feel comfortable, and empathizing with me as a parent. He was smart, and remembered everything about Lola and I, he never needed a chart. He remembered my birthday, where my family lived, everything! I have his cell number and email address...sometimes I use it too much, but it's amazing to have doctors who are available to you in times of need.


IT IS A SUBJECT THAT COMES UP A LOT WITH PARENTING, “LETTING GO”. IT COULD BE OF THE MASSIVE SPILL THAT OCCURRED IN THE KITCHEN, OR THE BRASH WORDS THAT COME FROM THEIR MOUTHS WHEN THEY ARE UPSET.  KIDS SEEM TO MOVE ON SO EASILY, AND YET US ADULTS HAVE A HARD TIME LETTING GO.  A HUGE AWAKENING {THUNK} FOR ME, WHILE READING YOUR STORY, WAS THE PART WHERE YOU SAID THAT YOU HAD TO LET GO OF YOUR DREAMS, AND SURRENDER TO THE FACT THAT YOU SIMPLY WANTED HER TO LIVE.  CAN YOU SHED A LITTLE MORE LIGHT ON YOUR PROCESS OF “LETTING GO”?

I had to let go of what I had imagined so many times. I have always been able to go with the flow, and so this entire experience definitely shook me to the core. I had such bad anxiety, I couldn't sleep, eat, focus on conversations or function. There was a new normal with the heart diagnosis, with the sudden surgery, with the breathing episodes, the epilepsy. Everytime we dodged a bullet, I'd relax a little bit and then something else would happen and the anxiety would start all over again. 

It built up over time, so with each hospitalization it was like, 'I knew this was too good to be true, I knew it was gonna get worse, I knew there was some underlying terrible thing we have just been waiting to unwrap'. 


I'm an Occupational Therapist, so I had to be pretty realistic about the whole thing. I KNEW what the disorders were that she was being tested for. I KNEW kids/had worked with kids with those diagnoses, I knew what it meant. T.Ryan didn't know what cystic fibrosis was, or what it meant to lose neurological function. I was envious of him in a way. 

There was definitely a period where I was so distanced from the outside world and my friends with "normal kids" that I couldn't even relate to them anymore. Even when I tried to take breaks and go out: I was bitter. At that point I joined a parent Epilepsy Support Group, and Parents for Heart. They got me through this period, hearing like stories, being able to relate.


YOU MENTIONED BEING AN OCCUPATIONAL THERAPIST; I REMEMBER TALKING ON THE PHONE ABOUT OUR PROFESSIONAL CAREERS AND WONDERING HOW IT WOULD ALL WORK WITH HOUR MUTUAL DREAM OF HAVING CHILDREN, TOO.  SO MANY MOMS STRESS AND STRUGGLE WITH THE WORKING VS. NOT WORKING BIT.  YOUR CIRCUMSTANCE WAS DIFFERENT IN THAT YOUR DECISION NOT TO WORK WAS GUIDED BY THE HEALTH AND WELL BEING OF LOLA.  I’M NOT SURE WHAT THE QUESTION IS HERE, BUT HAS IT BROUGHT ABOUT A CERTAIN PERSPECTIVE THAT MIGHT HELP OTHER MAMAS WHO STRUGGLE WITH THIS DECISION? 

My plan was to return to work 4 days/week after maternity leave. This totally changed with Lola's health issues and ongoing needs to be hospitalized, meds, to stay away from other kids/germs. The choice was totally guided by her health. I was lucky that we were able to work it out, so I could be home with her. I literally do not know what the other options would have been. 

There were times that other people were with me when Lola was having a seizure and difficulty breathing and they didn't notice!! It actually took me being her Mom and noticing the signs early enough to do something about it. This is very scary. I didn't trust Lola being in other people's care. 

Last spring, we finally hired a babysitter. She's amazing. It was a huge hurdle for me (and her) to get through the seizure training and leave her alone with the kids. We were both so very nervous. But now I work as a consultant and I am able to work as much or as little as I want and I trust Alex with the kids. I now have the privilege of going to work and getting a break, and trusting that my kids will be alive when I come home. And I say that very seriously. For so long, I didn't trust that I could leave and come back and have Lola be alive. 

So yes, I think I can give Moms of healthy kids some insight: 

at the end of the day, your children will be alive and you don't have to spend your day at work hoping that they will be alive. You can spend your day learning, making money, and missing your children, but knowing at the end of the day that you missed them, they missed you, you will greet eachother with a big hug and kiss and all will be right in the world.

  


CAN YOU GO INTO MORE DETAIL ABOUT WHAT IT WAS LIKE FOR YOU WHEN YOU LEARNED THAT YOU WERE PREGNANT WITH LOLA’S SISTER, STORIE?  THERE MUST HAVE BEEN SO MANY MIXED EMOTIONS.  

I feel terrible saying it now that she is here, and so wonderful and amazing … but I was not looking forward to a single thing. I didn't want another baby, at all. She was taking me away from Lola, who needed me, and who was my first priority. 

I had a high risk pregnancy with Storie, and it was just another stressor. Again, I couldn't work to pick up shifts or anything, so it was more stress on the marriage. T.Ryan had to do more to care for Lola and the house, and he was feeling a lot of emotional and financial pressure...it was one more thing. I was so scared that we were still going to be in the hospital all the time and that we would go broke having to put Storie in childcare somewhere.

As it turns out, she taught me so many lessons!! Of course, the minute she arrived I loved her so very much. My love had to be spread, I wasn't able to hover over Lola — and it was good for all of us. 

Storie didn't sleep until she was 11 months old. I was up every 3 hours all night long for almost a year! I think this was my kharma. I used to say to T., “Imagine how EASY it would be to have a perfectly healthy baby … Imagine if all we had to worry about was being tired!” … so yeah, that bit me hard. I was TIRED and it was awful, and something to complain about! She was healthy as can be, though. I definitely asked the doctors to check her a bit more closely, but she was good.


ARE THERE ANY CERTAIN CHARITIES YOU’D LIKE THE PUBLIC TO KNOW ABOUT? 

  • Yes! Sparekey! They paid our mortgage for us one month! Any family who spends more than 20 some days out of a month with their child in the hospital is eligible to have their mortgage paid. Our mortgage was paid the month of Lola' s surgery right when I quit working and was off my short term disability. It was enough of a boost to allow us to pay bills and reallocate mortgage dollars to other needs.
  • We also donate to MN Children's Hospital, specifically their Cardiovascular Intensive Care Unit. It was priceless for us to have our own room/space there while we were going thru surgery and recovery.
  • We have received great support from the Epilepsy Foundation. They helped me train our babysitter. They also have fun events for kids with a diagnosis and their families. There are support groups, and educational meetings, etc.
  • Ronald McDonald: They put a new Ronald McDonald house in the Children's Hospital while we were there. We were able to stay/sleep there, go there to get respite, meet other families, have snacks, play games, check email, you name it. It's decorated nicely, like a home, and the volunteers are sweet kind people, there to smile at you or worry about you/keep tabs on you, and bake you fresh cookies. Also, there were always volunteers dropping off books/toys for kids there. People volunteered during the week to make home cooked meals for all the Ronald McDonald families (any fam who had a child in the ICU or neonatal ICU). This was amazing! We got so sick of hospital food. They had a full kitchen in there, too, so you could cook or store snacks,etc. It was such a great place to unwind and feel "at home". We met many amazing families there. We volunteered there and cooked a meal for all of the families a year after Lola's surgery, when we thought we were in the clear … then the seizure stuff started. But it was nice to give back.
  • Parents for Heart: This has been a great way to connect with other families with kids with heart defects. Also they have worked hard to advocate to legislature that all kids get an oxygen monitor on their foot after birth to screen for heart defects that are often missed....this is being passed in many states and saving lives!

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I’m sure I’m not the only one feeling awed by Shannon’s story.  

Please leave your comments of support or any questions that you might have, below.  

And please share her story if it could help someone you know.  




Imagine What is Next

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SO, TO START OUR SIP&CHAT, WHAT ARE YOU DRINKING RIGHT NOW?   

I am drinking a Pier Coffee iced breve. It's Pier Coffee mixed with (a lot of!) half-and-half over ice and sweetened with some agave syrup. It tastes like a milkshake and I might have another.

 

IT IS NO SECRET TO ME THAT YOU LOVE COFFEE; I HAVE MANY MEMORIES WITH YOU AND A ‘CUP O JOE’ AS THE COMMON THREAD THAT LINKED THEM (ALONG WITH THREADS OF GRATEFUL DEAD AND HOLEY JEANS … BUT ANYWAY).  WHAT WHERE THE ORIGINAL INLKLINGS OF THOUGTH THAT LEAD TO THE CREATION OF YOUR COLD BREWED COFFEE? 

I have been in the specialty coffee industry for several years -- previously as a cafe owner -- and I fell in love with general feeling in the industry that coffee can improve the world. Coffee is the second largest globally traded commodity, behind oil, and there is a constant conversation in the specialty coffee sector about how the global coffee trade can support sustainable farming practices and direct trade relationships, and the way a consumer choice in Seattle can impact the life of a farmer in Burundi. I stepped away from my cafe about a year ago, but I had the sense that I wanted to stay close to those kind of conversations and the people who were so genuinely passionate about their work.

Cold brewed coffee fascinated me as a cafe owner because of how accessible and "drinkable" it is. 

My customers who regularly ordered mochas or heavily flavored lattes would try cold brew and could drink it black.

Cold brew is smooth and easy to drink it gives people a chance to really taste the richness and complexity of coffee and, as a coffee lover, it is so fun to see.

So all of this was swirling around me and then, in the course of a few inspiring conversations with friends, Pier Coffee just kind of came together. Often in life it seems like ideas (excuse the bad coffee pun) percolate in our brains and bubble to the surface, fully realized, when we need direction or encouragement.


WAS THERE A POINT WHEN THOSE INKLINGS AND IDEAS BECAME A CONCRETE REALITY? 

As a company, Pier Coffee came together pretty quickly but the reality of brewing, bottling, distributing, marketing, and etc. is a long way from concrete. It's dynamic and exciting, but sometimes feels a little like tap dancing on a water bed. And, in that way, it is a lot like parenting! Just when it feels like you understand your 3 1/2 year old they turn 4 and everything changes and then everything changes again in completely new ways with each kid.


WAS THERE EVER FEAR? FOR CREATING A BUSINESS, FOR PUTTING YOURSELF OUT THERE? 

Oh gosh, Hillz. There hasn't been any fear for about 15 minutes since I've been concentrating on answering your questions but, other than that, YES! All the time! There are real and practical fears about being a single mom and creating a business that I hope will support my kids. Am I going to be able to do it? If I fail, how am I going to keep the lights on and food on the table? Starting and running a business takes up a lot of emotional and intellectual space and I worry that I am taking too much of my energy away from my kids in my attempts to support them.

And, putting myself out there is definitely scary as well. 

Anytime we create something that we care about -- a product, a blog, a carefully prepared meal for our family -- the reaction to it feels, in a way, like a reaction to us.

There is also that feeling -- maybe it is motivation more than fear -- of having found work that I love and am excited about and wanting to do it well and be successful. I look around at other women and other moms I know who are putting themselves out there and pouring themselves into their work, either at home or outside the home (or, often, both!) and it makes me want to contribute just as much as they do to my family and my community.


TELL ME ABOUT THE BREWERY, AND HOW IT WAS BUILT, AND A BIT ABOUT HOW COLD BREWED COFFEE IS MADE.  

The Pier Brewery was built by my dad, and every time I think about that I just want to burst with gratitude. It is a little slice of space in the world where I feel completely comfortable and all the other dissonant noise of life seems to fall away. It's funny because it's tiny and isn't much to look at (although it smells like amazing) but I love being in there and at work.

photo

Cold brewed coffee is made by steeping coffee grounds in filtered water. The process is like baking in the sense that it requires strict attention to measurement and timing, but still allows for creativity to respond to the seasonal roasts we use. For example, we are brewing with beans from Bolivia right now and you can smell the notes of cocoa and apricot. Depending on the temperature, the ph levels, the ratios and the specific equipment we use, the result can have more pronounced chocolate flavors or a really full taste of fruit and apricot. It is exciting and challenging to play with this depending on what we are brewing for, the season, the customer response.


HOW DID YOU COME UP WITH THE NAME ‘PIER COFFEE’? 

I am something of a water baby and the strongest feeling of freedom I know is racing down a pier or dock and leaping into the water. That sense of letting go and leaping into the unknown inspires me often, but it also what the coffee is about. You don't need any special equipment or technique to drink Pier Coffee. You can take it anywhere, mix it how you like, Pier Coffee can ride along on a road trip or on your sailboat. 

Piers, to me, are places of adventure, of imagining what is next, of taking the plunge and coffee, as a beverage, inspires that as well by bringing people together in conversation, sparking moments of creativity and keeping us awake all night to go dancing.



I JUST FOUND PIER COFFEE ON INSTAGRAM, GREAT PHOTOS BY THE WAY!!  BY LOKING AT THE PICTURES, I CAN SEE THAT THE LOCAL COMMUNITY SEEMS TO BE SUPPORTING AND LOVING PIER COFFEE TOO.  HOW HARD WAS IT TO INCORPORATE YOUR PRODUCT INTO LOCAL STORES, PUBS, ETC?  AND HOW MUCH OF YOUR TIME IS SPENT HAND DELIVERING ORDERS? 

Thank you! I love Instagram. I have a tendency to over-think words in my head to the point I get stuck writing things down so, as a social media outlet Instagram, is so fun! No words necessary. Getting Pier Coffee in local stores is an ongoing process but it is so rewarding. You asked about the feeling of fear that comes with putting oneself out there and one thing I can say is that making sales calls for Pier Coffee has been a wonderful reminder that people are fantastic and nothing to fear. Every single store I have visited has been welcoming and kind and, even if Pier Coffee doesn't end up on their shelves (yet), I have been so well treated by the community. In the course of taking Pier Coffee into the world I have been continually reminded that people are kind, generous, and helpful.

I spend a lot of time hand delivering orders. My kids have a very early morning ritual of fumbling around for pillows and blankets and then falling back asleep in the car as we deliver coffee to individual homes and stores. When we started, I think they knew every house we visited because we were so well supported by friends, but now they are seeing some new homes and new parts of town during our early morning deliveries and my serious older child is doing math in the back seat and encouraging me to find even more customers so we can take a trip to Legoland.


IS THERE ANYTHING YOU CAN SAY, ABOUT HOW PIER COFFEE HAS ENRICHED YOUR MOTHERHOOD, AND/OR VICE VERSA? 

Pier Coffee wouldn't be possible without my kids; they absolutely inspire and enrich everything I do. They make me want to be my best self. Since my oldest child was a year, I have worked either at my own cafe or for small non-profits and my kids have just been along for the ride. I've been pregnant and painting the trim at my cafe, in labor (although I didn't want to admit it) and working on an arts festival, making lattes and keeping my fingers crossed that nap time in the cafe kitchen would stretch just a little longer and now we are on this new adventure together. For a long, long time I agonized over this. I worried that they were being dragged through my life instead of me opening up doors onto theirs: we don't go to the library as much as I want, we eat a lot of tacos, I have spent so many soccer practices working from my phone and I keep my fingers crossed that there are shoes in the car because often one of the three of us is missing a pair when we pull in somewhere. One day I expressed all of these concerns to a mentor mother (isn't it great to have other moms to look up to) and she pulled me aside and reminded me how brilliantly adaptable kids are. 

They are sponges built to absorb love and knowledge everywhere they go and our job as parents is to give kids a platform (or a pier) that is stable and built on a foundation of love and respect. 

They will gather the tools they need and leap off when they are ready. I think most parents do the best we can building a platform for our kids in whatever way we can and I am filled with hope when I look at my friends -- all working and parenting differently -- and their wonderful kids who will one day leap into their own brilliant futures.

As far as being an entrepreneur, there are some strong similarities to parenting. How many times have we mothers woken up with a plan for the day and watched it collapse before 7:30 AM, and yet, through creativity, determination, love, (and sometimes complete stubbornness) pulled it all together anyway? Having a business is like that. I imagine and visualize how a day will unfold and then spend a considerable amount of time adjusting and rethinking what I thought I knew. And, as with parenting, the unexpected can lead to joy, creativity, and growth.

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To learn more about and/or order some pier coffee go to: www.PierCoffee.com.  

You can look through her eyes on Instagram under the profile name: pier coffee

To read about my first package of pier coffee, click here.







 © Houseman 2013