We had just found out we were having another baby girl! So I imaged what it would be like to watch my two little girls playing together. 

Then I received a phone call, which rocked my world.

I do not usually answer the phone when I am with friends. But for some reason, that day, I did. I walked farther down the path, while my husband and friends continued to talk and watch our girls play.

Our midwife called to talk about the ultrasound. The doctor was concerned by what he saw. Micrognathia – a small lower jaw. Polyhydramnios – high levels of amniotic fluid. The combination meant the baby may not be able to swallow – or even breath on her own. 

I was shocked. But at the same time not surprised. I had noticed that the ultrasound pictures of her face looked odd. Thinking, it was just a weird angle. But why couldn’t the ultrasound tech give me one good picture of her face?

Suddenly all the pieces fit together to make a full picture. She probably had Treacher Collins Syndrome, just like her Daddy. 

My dream world came shattering down. Replaced with fears and uncertainties. Wondering what this diagnosis would mean for our little Lioness. And for our whole family. Would she be able to breathe, eat, and hear? Or would we spend the majority of her first years in and out of surgeries.  

I went from dreaming of my girls playing together, to praying the baby would be able to breath.

The 2 years following that day, were a roller coaster. Ultrasounds, NICU, cleft palate, bottle feeding, weight checks, physical therapy, speech therapy, hearing aids, and countless trips to the children’s hospital in the city.

Finally this past year, we settled into a normal-feeling life. The memories of how hard that season was, have began to fade. Replaced by the joy of watching my little girls play together. Something I would take for granted. If not for the phone call, three years ago, today.

The post Three Years Ago Today, I Received a Phone Call, Which Rocked my World. appeared first on The Baha Mama.

Big Sis got to sit at a real desk with the big kids, just like Auggie in the movie. She would even raise her hand and ask questions too. 

Duane shared about his childhood, and travel to Asia. I shared about falling in love with him. And we talked about the birth of our 2nd daughter.

At some point, Big Sis raised her hand and asked, “when was I born?” 

We missed that part of our story, because our presentation was about Treacher Collins Syndrome (TCS). We rather unintentionally said to Big Sis, “this is not about you.” As Via said, in Wonder, “Auggie is the sun, he is the center of our universe and we all revolve around him.” Ouch!

It’s Not Easy Being the Sister

When I was growing up, my older sister was in a wheel chair. Everyone in our community knew who she was and was praying for her to be healed. And I was just her little sister. Instead of people saying, “Hi Becky, how are you doing?” They’d say, “Hi, how is your sister doing?” So I always felt extra compassion for the siblings. Living in the shadow. Not wanting to bother parents with my problems, because they were small problems compared to what my sister was going through. 

When we found out that our 2nd daughter has TCS, I immediately felt bad for her Big Sister. Realizing, this new baby would require a lot from us. The world would no longer revolve around Big Sis. 

At first, I was intentional, wanting to make sure Big Sis still felt loved and got quality time with us. But apparently life took over, to the point that we left Big Sis out of our family presentation. 

After I read “Wonder,” I read, “Auggie & Me,” which includes the story of Christopher. He had been Auggie’s friend since they were babies, but then moved away. Several times, Christopher says, “it’s not easy to be friends with Auggie.” It is also not easy to be the sister. Friends get to choose their friends. I chose Duane. But my daughter did not get to pick her family, or choose to be the Big Sister. This is the family and the life she was given.

You can’t choose your family, but you can choose your friends

I could not ask for a better little person as my first daughter. I am so thankful I got to start mother-hood with a “normal” baby. She was an easy, happy baby. Now she is growing up to be so smart and funny. Big Sis is a born leader and a teacher. If I want Little Sis to learn to say or sign a word, she will always copy what her sister is saying or doing.

When they play together, Little Sis says, “dats greem.” Big Sis corrects her, “no, that is blue.” And then helps Little Sis make the sign, “Put your hand like this. No, 4 fingers together. Now tuck your thumb. Not like that. Do this. Now that’s a B. Now shake it. That means Blue. Good job! High 5!”

Then Big Sis turns to me and says, “Mama, get your phone and take a picture and say, ‘awe, you are so cute’ ok? Sister, come here, hug?”

Little sis responds, “O-tay. Heg.”

I love how much our girls love each other, and I am so thankful that they have each other.

The post When was I born? The Story of the Forgotten Sibling. appeared first on The Baha Mama.

“Wonder,” is the story of a boy named Auggie. He had been home schooled and now 5th grade is his first year going to public school. Auggie looks very different than the other kids, because he has as genetic condition, which effects the development of his facial bones. Auggie has the same syndrome as my husband, Duane and our 2 year old daughter, who have Treacher Collins Syndrome (TCS).

How Did We End Up Visiting School?

We had originally planned to have a midwife deliver our second baby. However our daughter’s diagnosis of TCS meant she needed to be born at a big hospital in the city 4 hours away. Now 2 1/2 years later, it was our midwife, who arranged for our family to speak at her daughter’s class.

Our 4 year old daughter also just watched the movie Wonder, so she was excited to see a real school just like in the movie. We got to see our midwife again, and meet her daughter and her daughter’s classmates and their teacher.

Our Presentation

My husband mostly talked about not taking yourself too seriously (that is one of his precepts), along with having a sense of humor, and overcoming challenges. When a kid would say to him, “dude, your face looks weird.” He would respond, “I know! It’s crazy, isn’t it?” Which made it less fun for the kid who was trying to making fun of him. Duane shared about traveling to Asia, and how white Americans always get stared at, which for him was no big deal.

I shared about how I fell in love with Duane, but wasn’t sure about marrying him, because of his face. But then I realized that everything I loved about who he is – his sense of humor and confidence etc – is all because of what he went through in life.

My precept is, “who you are, matters more than how you look.”

Q&A Time

My husband loves public speaking, so he talked for 30 minutes! (and I talked for 5) and then the kids asked lots of questions. Mostly things like:
– “was your 5th grade a lot like Auggie’s?”
– “did you get made fun of?”
– “how many surgeries did you have?”
– “how did your parents react when they first saw you?”

Our 4 year old raised her hand and asked, “when was I born?” since we skipped that part of our family story. Oops!

Our midwife and the teacher asked deeper questions like, “how should someone like me, respond when I see someone who is so different?” (Since we are taught not to stare). We know that Duane and our daughter look different, and we know people are staring, so please ask! It’s ok to ask, “what happened?” or “you look kind of different, why is that?” NOT “what’s wrong with your face?”

Now thanks to the Movie “Wonder,” if I see someone staring at our daughter, I can break the ice, by asking, “have you seen the movie Wonder?” Most kids have seen the movie, so when I explain that my daughter has the same syndrome as Aggie, kids usually respond, “no way! That’s so cool!”

I don’t think having TCS is cool, however it is cool that there is a movie about TCS.

The post The Day We Got Schooled: Our Family’s Presentation on TCS and Wonder appeared first on The Baha Mama.

 You never know how strong you are, until being strong is the only choice you have.

 That became my theme during my daughter’s surgery and recovery. It continued at a theme, with the discovery that my daughter needed hearing aids too. But I didn’t want to just be strong for myself and my daughter. I wanted to be a light in the darkness and bring hope to other families.

Then, when I couldn’t find a comfortable, affordable headband to hold my daughter’s hearing aid, I decided to become the solution which I was seeking.

When life gives you lemons, make lemonade. 

Or, in this case: when life gives you a hearing aid, start making headbands. I chose to be strong, investing time and money, in spite of the risk of failure. 

Through that I discovered the joy of bringing light and hope to other families, by providing cute, comfortable, affordable headbands which our children love to wear!

Turning a fun hobby into a successful business also led to a Shift in my Confidence. 

So, in hind-sight, my theme for the past couple years has been something like: 

When life gives you lemons, choose to be light in the darkness. Make lemonade to give hope to others. In the process, you will discover just how strong you really are. 

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I do NOT want to give my child “every advantage possible.”

However it would be nice to minimize the disadvantages my child does have. I do want her to have a hearing aid, so she can hear just like everyone else. But I am not giving her super-sonic ears with spy technology, so she can eavesdrop on the neighbors 10 houses down. That’s just crazy.

I am thankful for #WonderTheMovie

It is about a boy named Auggie who has Treacher Collins Syndome.  My husband and our daughter is a “Real Life Auggie.” The movie is raising awareness and encouraging people to “Choose Kind.” 

I hope this movie does help remove some of the disadvantages for my daughter. However, there are still challenges in life which are unavoidable.

I think about the butterfly

When a caterpillar emerges from the cocoon as a butterfly, it is a struggle to get out of the cacoon. In that situation, any loving parent, should want to help their child. However, the process of struggle strengthens the butterfly’s wings so it can fly. If the butterfly receives help, and avoids that challenge, than the butterfly will never be able to fly.

So on one hand, I do not want my child to suffer. But even worse, I do not want to be the reason she can never fly. I do not what to cripple my daughter by “giving her an advantage.” And I do not want either of my daughters to become a fragile snowflake who falls apart at the smallest offense. #SuckItUpButtercup

Introducing Duane

7 years ago, I meet Duane Zingale and quickly fell in love. Everything about Duane is amazing. His leadership skills, experience living overseas, love for people, the fun way he interacts with children, and his love for outdoor adventures, hiking, biking, and rock climbing. He is confident, not cocky, but secure in his identity. Duane has a great sense of humor and makes me laugh. While he is funny, he also knows when to be serious. He treats me well – opening the door, or offering a hand when climbing over boulders on our hike. Duane is willing and eager to hear my input on decisions. He wants to, not only be a leader, but raise up others in leadership.

In my eyes, he is perfect in every way. But there is just one thing which made me hesitant to marry him – Treacher Collins Syndrome. Because of that, his face looks noticeably different. He is missing cheekbones, and has a small jaw hidden behind his giant beard. He has prosthetic ears and wears a hearing aid.

How would I feel going everywhere with him and having people stare at him, stare at us?

If I had a TCS, I would have longed to be invisible, hoping no one would notice me. Being made fun of would have crushed me. But not Duane, He rose above that, confident, being loud and funny, not caring what people thought.

Then I realized, everything I love about Duane, is shaped by what he went through in life. It is because of TCS, that Duane became the man who I fell in love with. I wouldn’t trade that for anything. So I married him. 

And then we had a daughter

Duane’s family did not have the TCS community on FaceBook. He never met another person who had TCS, until our 2nd daughter was born. As I saw my husband hold his baby girl for the first time, I looked at them in wonder, thinking, “wow, she looks just like Dada.” I am thankful she has a Dada who looks just like her, and is someone for her to look up to.

Raising a Child who is not limited by the challenges

Since Duane turned out so well, I want to know how he was raised. That was 20+ years ago, so his parents did not all the free services that we have to today. For the most-part he was treated like a normal kid and so he grew up to be a normal adult. Actually I think he is above-average, probably because he doesn’t back down from a challenge.

I don’t want my child’s entire life to be defined by her disadvantages. I don’t want her be treated like a celebrity for having special needs. Because if being “handicap” makes her feel important, then that becomes her identity. If she is defined by her challenges, then she limited to that.

I think of Jono Lancaster, who also has TCS. The challenges he faced, made him stronger. Shortly after our daughter was born, Jono came to visit our family. He travels the world encouraging families that their child is not limited by their disabilities. Telling families like yours: your daughter can fly, and she will fly!

It might take a lot more time and effort for my little girl to strengthen her wings, so she can fly. But once she flies, nothing will be able stop our little Lioness.

The post I am NOT giving my Child every advantage possible appeared first on The Baha Mama.

At the pre-op appointment, I was inundated with information about surgery and recovery. Why did the surgeon wait until just hours before surgery to tell me all those details? I was trying to wrap my mind around it all. Suddenly the Dr said “we can’t do surgery now, come back in a few weeks.” The baby was getting molars. The herbal teething remedy I had given her contained ingredients which could cause problems with anesthesia. Oops, but seriously, we had to postpone surgery? Apparently yes.

That night, Duane and I struggled to get both kids to go to sleep in our hotel room. I was very thankful we did not have to be back at the hospital at 6am for surgery. It was a huge relief to not do surgery. But now we need to do the whole exhausting trip to the city all over again. Only this time, we have to do surgery too. That whole event was like a Dress Rehearsal. Which went terrible! It does not give me much confidence the actual event will be any better. But at least I know what to expect next time.

In the past, I faced challenges head-on, drawing strength from previous victories.

I traveled alone in India. All the while reminding myself of the time a few months earlier, when I drove from Idaho to Montana alone. I barely knew how to drive stick-shift, but I made it. I only stalled 6 times in a 12 hour drive.

For the next several years, every time I faced something big and scary, I reminded myself of 12 hours driving stick-shift, and how God kept me safe and alive when I traveled alone in India. But those events were over 7 years ago now. Their ability to give me confidence has diminished. Do I have a more recent victories to draw strength from?

I think of the big challenges which Duane and I faced together. As newlyweds, we moved to India on a 1-way ticket. Only to return to the USA, 4 months later. Mourning the death of a dream, but thankful to still be alive. A year later, we were going to lead a team back to India. Returning to India would have been a big victory for me. But I discovered I was pregnant with Monkey. Already plagued with nightmares of loosing her, there was no way I was going back to India. India had stolen so much from us already, I wasn’t going to let it take my daughter too.

The next year, we faced the challenge of taking a new baby on a 3-month road trip. I was still dealing with health issues (thanks to India). And Duane’s chronic back-pain made driving miserable. Then in Virginia, came the surprising discovery of a peanut allergy. We cut our trip short and returned home like a whimpering puppy with it’s tail between it’s legs.

In fact, that scene is the conclusion of every big challenge I’ve faced since marriage. Instead of finishing well, high-5ing each other and proud of our victory, we’ve barely made it out alive and are thankful to have survived. If only by the skin of our teeth.

While I don’t want to do that ever again, I am thankful for how we have learned and grown. God “works all things together for good.” Don’t get me wrong, we have had some achievements, successes, and victories. But those were quickly drowned out by a flood of disappointing losses and disappointments.

The miracles surrounding PipSqueak’s birth were incredible. But we still had to deal with cleft palate, 8 days in the NICU, and a year of difficulties with eating. Now God has healed the baby’s eczema and she’s “outgrown” the issues with tongue-tie. He healed my food allergies, and Duane’s back pain too. But the baby still needs surgery to repair the cleft palate. Come on God! Can’t You just do one more little thing for us?

The past 5 years we have faced challenge after challenge, with just enough victories to cling to the hope things will get better.

But the more hope I have, the deeper the pain of disappointment. Each disappointment makes it harder and harder to hope again.

It feels as if I am lost as sea, trying not to drown. Just in a nick of time, someone throws me a life jacket, or a rescue boat pick me up. But it is only a momentary relief, before the boat sinks and the life-jacket pops. I am still alive, but I am still drowning. I’m exhausted from trying to survive. Take a deep breath, because here comes the next big wave, and there’s no guarantee we will make it out alive.

Ok, so thats a little bit over-dramatic, considering it’s just a simple cleft palate surgery. Can this just be over already?!

The post Challenges, Victories, and Disapointments appeared first on The Baha Mama.

There’s been a lot of struggles, hurts, stresses, and disappointments. The biggest challenge for me were the events surrounding Lioness’ birth. 

We had looked forward to having a natural birth with a mid-wife.

We didn’t have that option with Monkey in Idaho. But we did have a great natural birth experience at our little local hospital. I wanted to replicate that, but this would be even better, because now I know what I’m doing.

When Duane & I were first married, we felt like we had a “word of the Lord” that our children wouldn’t have TCS. Getting that diagnoses half way through pregnancy was a big shock. I was mad at God for a little while. “What the heck? Did You change Your mind? Do we suck at hearing Your voice?”

On top of that, being told to I had to have a hospital birth. At the Children’s Hospital in the city 4 hours away. Health insurance wouldn’t cover my prenatal check-ups with mid-wife, since we were “high risk,” but all our doctors were now 4 hours away. So for a month, I felt abandoned by our whole medical system.

When I had the pre-term labor scare at 35 weeks, we went to the ER and they said, “Who is your dr? Where are your medical records? Why didn’t we know you exist?” I don’t know? And they sent me off to the City. Because they didn’t want to have to life-flight me while in real labor (that was a good plan).

Eight Months Pregnant and a Homeless in a New City

After abandoning our toddler (who we’ve only left overnight once). We were home-less in the city. Hotel-hopping because there was no room in the inn. At least I knew I wouldn’t have to give birth in a barn. Because if I was in labor, I could have a room at the hospital.

But we were trying to keep the baby in until closer to her due-date. Meanwhile the doctors were asking “is there any point at which you would want to be induced?” NO! The whole situation was ridiculous. Can’t we just go home already?

Then we were blessed to be able to stay in a friend’s vacation home for a few days until a room opened up at the Ronald McDonald House. A friend brought Monkey to us. After 5 days apart, we really missed her! We ended up having lots of quality family time, making fun memories of our City “Vacation.” 

Except I was mentally updating my emergency plan, almost daily.

Thinking though, “if I go into labor right now, are we going to take Monkey to the hospital with us? We could call a friend to drive 3 hours to come watch her? Or Duane drive across the city to drop Monkey off with our friends, who she doesn’t really know?” Fortunately the baby stayed in until after Duane’s mom got there to help with Monkey.

There was always that lingering thought in the back of our heads, “any day now we’re going to have a baby, and we have no idea how bad the TCS might be.” We were ready to go home before we even knew how long we’d be “sentenced” to stay in the NICU. The daily stress of suspense is exhausting!

She Finally Decided: It’s Time To Be Born.

We had 4 months to mentally prepare for a worse-case scenario. But as long as the baby stayed in, she was safe, happy, alive and well. We had no idea what might happen when she was born.

Fortunately there comes a point in pregnancy where you say, “I am so done being pregnant, can we please just do this whole birth thing already?!” It was scary pushing and listening to see if she was crying. It was quite the joyous shock to have a screaming (breathing) baby placed on my chest.

Sharing Our “Traumatic” Birth Story

I told someone a simple version of our birth story, “We had the baby born in the city because we didn’t know if she’d be able to breath and might need surgery right away. She came out screaming, and the only issues is cleft palate. God does miracles!”

The lady responded “how traumatic!” I disagreed. “Traumatic” would be expecting a normal birth story and ending up having your baby life-flighted to the city, while you’re left wondering “what’s wrong?” and “will my baby live?”

But maybe that lady was right, our whole story is kind of traumatic, just a different kind of trauma. I guess no two traumatic stories are exactly the same level of traumatic-ness. 

Overall, I’d say Duane and I do a great job just taking whatever life throws at us and adjusting accordingly. All the while acting like it’s no big deal. My collage professor would call it “GMT = good missionary training.” Only this time, it was our crazy experiences in missions which taught us to find the positive things to be thankful for, and keep calm and trust God.

The post It Could Be Worse… appeared first on The Baha Mama.

By 39 weeks, I began to wonder if she was ever going to come out. I was so done with being pregnant, and eager to meet my daughter, but scared.

As long as she is inside she is safe and happy. Everything is ok. Everything seems “normal.” But once she is born everything changes.

I went into labor with mixed feelings.

Each contraction bringing us closer to birth. To the moment we find out.

With each push, wondering: Will she be ok? How bad is it? How long will we have to stay in the NICU?

Feeling intense pain, stretching, pulling.

Her head is out, but all is silent.

My heart drops. Time stands still.

Another contraction, the baby is born.

Labor is over! But is she going to be ok?

Suddenly, a screaming, squirming baby is placed in my arms.

Is this really my baby?

She is ok? She is breathing?

She is really ok. I get to hold her.

Are you sure she is ok?

It’s always a special moment when that new baby is placed in Mama’s arms. It’s the “normal” birth experience I took for granted the first time around. When I didn’t expect to be able hold the baby, but then everything is ok. That moment is a million times more special.

I felt that same overwhelming love every morning walking into the NICU, and seeing my precious baby. Everyday filled with amazement and thankfulness for the miracle of our daughter.

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When Lioness was in the NICU, she ate every 3 hours, which equals 8 times a day. So I was told to make milk 8 times a day as well, but to pump for 15 minutes every 2 hours all day long that way I could go longer stretches at night.

What I learned from that is I make twice as much milk during the day as I did during the night, probably because I was sitting with the baby and pumping every 2 hours. Being away from the baby over night and going longer between pumping results in less milk.

During the day, I could make 8 ounces in a 15 minutes. The nurse said she had never seen someone make that much milk on day 4. After going home from the hospital, there were times I’d make as much as 12 ounces in one milk-making session. 

I pretty sure there’s a direct correlation between making excessive quantities of milk and getting clogged milk ducts. So don’t be envious! I spent 3 weeks working that out. Each day there was a new painful spot. Hot showers helped, and finally one day all the trapped milk was released and a record setting 17 ounces of milk came forth.

That was around the same time I decided I had plenty on milk in the freezer and pumping every 2-3 hours was unrealistic, so I started going 4 hours between pumping sessions, which sometimes turned into 5 hours, at which point my body said, “What? You want me to keep making milk? I thought the baby was weened already.”

I’ve heard I should stockpile lots of milk in the beginning, because at some point the milk production slows down. For me that seemed to happen around 6 weeks.

Between clogged ducts and being a slacker, I now make normal milk quantities. I usually make a 4 ounce bottle for the baby, but sometimes its a 3.5 ounce bottle, especially during the night. During the day I usually make about 6 ounces at a time, so there’s an extra ounce, since I separate the milk and don’t feed 1 ounce of formilk “skim milk” to the baby. 

Cutting it so close is stressful, thankfully once a day I make a higher amount of milk, usually in the morning after a hot shower. I tried taking a hot bath in the evening, but that didn’t seem to make a difference. I have figured out for optimal milk production, I wake up, make milk, eat breakfast etc, then take a hot shower and make milk around 2 hours since the previous milk-making time. That results in 10-12 ounces of milk, so I can freeze some and get ahead in preparation for the lower milk production during the night. I guess I could try taking a hot shower before every time I make milk, but who has time for that?

I’m now attempting to resume a daytime schedule of making milk every 2 1/2 – 3ish hours. That’s unrealistic on days when we’re out and about, but when I’m home all day, I need to be making milk. I’m hoping pumping more often will lead to an increase in the quantity of milk per pumping session, but if nothing else I’ll have more milk simply because I make milk more times per day. That way I can stockpile lots of milk in the freezer, so I can quit pumping, but baby girl can keep drinking Mama’s milk. Because pumping sucks and I’d like to be done already!

———————-

Added thoughts on Oct 17th

Today my body decided to disprove every theory I had based my experiences the previous few days. I made lots of milk first thing in the morning without a hot shower. 2 hours later I attempted to make milk, but nothing happened. After a hot shower, I got a record low of 3 ounces. Clearly there is no rhyme or reason to this. But when all else fails, make milk while holding a hungry, wailing, squirming infant. Be sure to wear a hands-free-pumping-bra to keep everything securely held in place, otherwise you’ll end up with a milky mess.

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A light came into the NICU on Day 4.

It was 4pm on Friday afternoon, and I was hungry. I went out to the NICU waiting room to eat dinner, because we are not allowed to eat in the NICU. The waiting room was silent. A couple sat on the couch off to one side looking exhausted. There was a young lady in the corner eating dinner and staring at the TV. At the table in the middle of the room, sat a Latino mom who I had met earlier that day. I sat with her, and quietly asked, “how is your baby doing?” She responded in broken English, then the couple on the couch said something to us. The girl in the corner turned around and joined in, as we realized the one thing we all have common: a baby in the NICU.

The couple said, “we’re probably not going to remember everyone’s name, but what’s your name and your baby’s name?” We went around saying names and then suddenly we were taking turns sharing our stories and asking questions. The girl in the corner who had appeared to be so depressed, came alive realizing she and the wife had similar birth stories and complications. The couple shared how their baby had lots of issues in their hospital and had to be transferred to Portland. Upon arrival, the same tests were done with much better results. The doctors were shocked. The couple said, “She is our miracle baby. Be encouraged, whatever your situation is, God does miracles.”

That’s the moment the light came in, and I remembered I’m supposed to be a light in the NICU too. So I agreed, “He sure does!” and shared a bit of our story.

After a wonderful bonding time, we all left the waiting room together and returned to our babies. A light had come into the NICU and I was ready to be a light too.

After that Duane & I started having fun making faces at camera when we asked the nurses to let us into the NICU. I was intentional about talking to anyone who was in the NICU waiting room, hearing their story and sharing our miracle.

I soon discovered it was also the waiting room for “normal” labor and delivery. The “normal” people would feel sorry for me, realizing our baby is in the NICU. So I had the opportunity to encourage them with our story of how we didn’t know if our baby would be able to breath when she was born, and expected her to be whisked away and possibly need surgery. Instead she came out screaming and was doing so much better than we expected, because God does miracles!

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