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I took a risk. I knew I needed to.

I’d been following the fundraising race announcements on the nonprofit organization’s Facebook page for weeks. Something told me I was supposed to go. Something told me I was supposed to race. Something told me I needed to be there. Something whispered. Take a risk. Ask. Just ask if they need a photographer.

My brain told me no. My brain told me stop. My brain told me I should stay home. This is a ridiculous idea. It’s too late. Don’t even go there. I have nothing to offer. I’m not professional. And duh! They already have a photographer. What qualifies me to photograph a race projected to earn $40,000.00 for children who have Down syndrome? What makes me believe I’m good enough to take on this task when I’m still in exploration mode? Where in the world do these crazy ideas keep coming from anyway?

I didn’t know.

I don’t know for sure.

Perhaps it was God’s still small voice.

So I called.

I couldn’t ignore the feeling I was supposed to do this.

I picked up the phone. She answered.

“Hi! My name is Amy. I see you have a fundraising race coming up this Saturday. I have 14 1/2 years of experience as a speech-language therapist, but I stopped working in December to focus on writing and exploring special needs photography. I’m looking for opportunities to do some special needs photography and wondered if there was any chance you needed a photographer for the event this weekend. And by the way, one of my former patients comes to your center for activities quite often. I’m sure her mom would be happy to vouch for me if you need a reference.”

She told me that when the race planning committee met a week and a half prior, the news was that the originally scheduled photographer was no longer able to shoot the event. She wasn’t sure if they’d found a replacement photographer, but she was going to check with the committee chair. And she wanted to know the name of my former patient’s mom. I reluctantly shared the mom’s name, and she knew her right away. “Oh yes, they’re very active here,” she said, and promised to get back to me within a day.

I hung up.

I’d done all I could.

Now it was in God’s hands.

30 minutes after I hung up, I decided I’d better text that mom and give her a heads up that I inquired about photography for the race…just in case they called her for a reference.

When I texted the mom, she responded immediately. “Ha! You are actually already too late! I just got off the phone.” In those 30 minutes between my phone call to the nonprofit and my heads-up text to the mom, the mom just so happened to call the nonprofit for something else, found out I had made the contact, and gave me a “rave review” without me even knowing!

Crazy.

Quiet confirmation.

The next day, the nonprofit called with an update. They’d found a replacement photographer, but could really use a second one. So they invited me to photograph, confirmed that my name would be added to the list of volunteers, and reminded me to pick up a t-shirt at the volunteer desk.

Race day arrived in the blink of an eye.

The air was brisk, chilly. I wore a long-sleeve t-shirt with a short-sleeve t-shirt over it, and figured I’d put the volunteer t-shirt right on top of that. I chose jean leggings and Target Toms. Neither were perfect for a race, but the Target Toms had brought me through long days in Haiti and Dominican Republic just fine, so why not for this, too?

The race was awesome, a photography dream come true. Hundreds of children who have Down syndrome and their delightful family and friends? Free reign to photograph those beauties in a fun, purpose-filled setting? Who could ask for more? Seriously. It was a joy.

After I picked up my t-shirt, I realized I just needed to own this thing. I needed to go ahead and take those photographs. Ten minutes in, I noticed the other photographer in the thick of things at the registration desk, but I knew that wasn’t my place. So I set my mind to do my own thing and just go for it.

I photographed moments leading up to the race. I photographed the race. I photographed special events after the race. And get this…I walked-ran the race, too.

I didn’t plan to walk-run the race, but how silly was that? Apparently, I didn’t know myself quite as well as I thought I did. Me at a race with hundreds of children with Down syndrome and I’m NOT GOING TO RUN with them? How clueless was I arriving in my jean leggings and Target Toms?

So after I took all the starting line and first block photographs of the 5K heat and 1 mile heat, I decided to bring up the rear and run the 5K. I ran. As fast as I could. With my camera. My goal was to catch up to the 5K stragglers. I ran for a long time all by myself. When I finally caught up to the last of the stragglers, I ran up ahead and captured their moment. Then I ran more until I caught up with the next group, and captured their moment. I ran further ahead, group by group, moment by moment. I was the racing photographer and I was bound and determined to photograph this race in real time. Because why not?

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I ran with children who have Down syndrome. I ran with their families. I ran with their friends. I ran with their teachers. I ran with their siblings and supporters. We high fived. We laughed. We stopped for bruised knees. We cheered each other on. It was awesome.

I crossed the finish line by myself. There were no familiar faces cheering me on in the final seconds of the race. There was nobody to hug, nobody to high five. There was nobody there to take a photo to mark my first 5K. But it was truly okay. That day, that race, I didn’t need external fanfare. I had all the fanfare I ever needed. Internal joy and peace that this was totally my gig, my happy place.

Quiet confirmation.

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I took 1,014 photographs that day. I had to triple check the number. I couldn’t believe it was actually true.

For the next two days, I spent nap time and late night time editing the photos, deleting the junk and selecting the ones I felt were best to share with the nonprofit. Three days after the race, I delivered a CD of 419 photos to the nonprofit’s office.

All in all, I was proud of those 419 photographs. I was happy with the way they turned out. They brought me joy. They brought me peace. I knew now. I had confirmation. Given complete freedom to photograph and the right set of circumstances, I really could create the beauty, the art I’d envisioned.

Of the 419 photographs, I was particularly proud of a smaller group of them, and ADORED six so much that I wanted to share on my blog and a new Facebook page I’m developing for photography. I sent an inquiry to the hosting nonprofit and discovered that race participants signed a release for the nonprofit to share the photographs. As a result, the nonprofit has kindly agreed to contact six families on my behalf to see if they’ll give me permission to share the photographs (without any reference to names, of course).

When I received that notice, my heart shifted.

Inquiries will be made. Perhaps some or all six families will give me permission to share the photographs I took of their beautiful children at the race. But there’s no guarantee. There’s a chance that all of the photographs from that day will remain a quiet confirmation between me and God, a quiet confirmation of my call to press forward with photography, especially special needs photography.

Quiet confirmation.

Early last week, the nonprofit organization shared 100 of my photographs from the race on their Facebook page. They included a few of my favorite photos. Let me just say, it has been pure joy to see complete strangers’ response to the photos. God knew this was the quiet confirmation I needed.

In response to a sweet girl’s photograph that was a bit too dark in my estimation, a photograph I knew I could’ve shot better had I more time with her.

“Beautiful. Seriously.”

In response to the photo I LOVED, but critiqued because it was a bit blurry.

“You look great Benny!” and “Go Benny go!”

In response to a photo of a daddy hugging his baby girl that showed the deep emotion I sense from parents of children with special needs.

“This is so sweet.”

In response to the photo of a little boy who toddled towards me at the finish line. He was so cute and so on the move that my best photo of him turned out a bit blurry for my preference.

“Love you Luc!” “Great photo!” and “Love you buddy!”

In response to the little girl that hid behind her mama and ran away from me earlier in the day, the little girl I captured on stage after she was tired and worn out, but still endearing and oh so sweet.

“My princess Aly!!”

Yes.

Quiet confirmation.

None of those people knew me. None of those people had any connection to me. They simply saw the photographs and recognized them as beauty.

Perhaps we don’t need others’ loud fanfare after all. Perhaps quiet confirmation is all we need. Quiet confirmation of a life well lived. Quiet confirmation of a choice well made. Quiet confirmation of a call answered. And warmly received.

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It’s a great honor to introduce you to Kathleen who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Kathleen is a wife and mama of two sweet girls. Her oldest daughter, Teagan, received an incredibly rare genetic diagnosis of Trisomy 12p just before her first birthday. Teagan’s diagnosis has been incredibly life changing and has made life incredibly challenging. Kathleen loves her daughter fiercely and will fight to the ends of the earth advocating on her behalf, but this journey has also caused Kathleen to question her faith like never before. Friends, this post is ridiculously moving. I cried the first time I read it, and continue to be deeply moved with every subsequent read. When Kathleen submitted her post, she offered to tone down the anger and uncertainty given the spirit of my blog. I reassured her, “This is so good. So beautiful. I don’t even have words. It’s okay to question. It’s okay.” You must read Kathleen’s story. You simply must. This post embodies everything I ever envisioned this series to be. Thank you, Kathleen. 

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My daughter was six months old when we first suspected something was wrong. It started innocently enough – our daycare provider mentioned that Teagan ought to be sitting up by now. We knew she had low muscle tone, but every doctor we’d spoken with had either brushed it off or attributed it to her difficult birth (her lungs were blocked and she didn’t get air for a few minutes). We figured it stemmed from that, and made an appointment with a physical therapist. Not incredibly worried.

As the months passed since that first appointment, the developmental delays began to pile up. My husband kept a positive outlook, our parents kept a positive outlook, and our friends would say things like “But she’ll be fine, right?” Call it mother’s intuition – I knew bad news was coming.

We began an onslaught of appointments to try and figure out what this elusive issue was. We visited neurologists, therapists, and early childhood specialists; we ran MRIs, EEGs and every test under the sun.

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And we prayed constantly. I had a strong Catholic upbringing, and God was whom I had turned to with every hope, every fear, every gratitude for as long as I can remember. I prayed it was something we could overcome. Prayed it was something that would still allow her to have a normal life. Prayed that God would NOT let something be wrong with my perfect, sweet, lovely baby girl.

It was our second neurologist who suggested we do genetic testing. I will never forget that phone call, just before Teagan turned one, with the diagnosis: Trisomy 12p, the mosaic version. A portion of Teagan’s cells had extra material on the P arm of the 12th chromosome. That teeny tiny, itty bitty blip of material was causing – and would continue to cause – enormous problems. Our diagnosis was incredibly rare. Incredibly life changing. Incredibly limiting.

The days after the diagnosis were a blur of tears, snuggles, confusion and anger. Tears because I couldn’t believe I was being told that this wonderful little being in my arms had something “wrong” with her. Snuggles because I loved her so much and wasn’t going to let her down. Confusion because no one would give me a straight answer…will she be able to walk? We don’t know. Will she go to normal school? We don’t know. Will she have a good quality of life? We’ll have to wait and see. And anger because I didn’t understand how this could have happened. I thought God was watching out for me! I’m not perfect, but I’m a good person…and forget about me, what about HER?! She is 100% innocent! I was furious. And there was no one to be mad at. Except God.

I would head to work in the morning and scream at God for the entire drive. I would feel better during the day; when I was at work I actually knew what to do with myself. I would spend my evenings and days off with my sweet baby and decide the doctors and therapists were nuts, because my daughter was PERFECT, and they had to be mistaken.

My husband would research, which often times made us feel more confused and alone. The most complete study we found on Trisomy 12p was thirty years old, and listed forty confirmed cases. Forty. Of all the people in the world now, and of all the people who have ever been…forty.

And together, the three of us would progress. To the next doctor’s appointment. To the next brain scan. To the next therapy session. To the next developmental milestone. They came late. They came slowly. But when they did come, we would rejoice. This is still the way we operate today.

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Needless to say, parenting has not been what I had expected. I didn’t expect to be a special mama. I didn’t expect to forego music and dance classes in lieu of physical therapy and speech sessions. I didn’t expect I would purposely use sign language in public so it was clear to everyone that something is different. I didn’t expect my daughter would ask me to sing Row Row twenty times a day because it is one of the few things she can communicate and it makes her feel connected. I didn’t expect to worry she would spend her school years eating lunch by herself. I didn’t expect to fear that someday she’ll live in a home and no one will come to visit her on Christmas. I didn’t expect to find it so hard to talk to my children about God. I didn’t expect I could be in a room full of friends and laughing children and feel completely alone.

I also didn’t expect to find out so much about myself. That I would be able to work so hard and love so fiercely. That I would become a unique kind of leader. That I would know when to fight for my daughter. That I would develop a level of compassion deeper than I knew possible. And I didn’t expect that the hardest worker I’ve ever known would be my own tiny child. It took five months to teach Teagan to roll over, something most babies don’t have to be taught. But she did it. It took three different physical therapists and inserts in her shoes to teach Teagan to walk. But she did it. She signs. She is working on talking. She is smart and stubborn and wonderful. And she loves. Oh how she loves, with her huge smiles and gentle touches, her sweet kisses and full body hugs.

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There is a lot of confusion in my life, which you’ve probably gathered by now (warning: here is the part where I sound like a self-righteous brat). I feel incredibly lucky to have the determined, loving man I chose to partner with for life. And I know that were the bonds with some of my family members and friends not as strong as they are, I would feel more alone and less supported than I do. But I don’t give God credit for that. I did that. I feel very much self reliant. Maybe someday I’ll look back and see his hand in these “blessings” – but not yet. I’m still pissed.

I can go from hating God, to begging him for help, to deciding I don’t believe in him, to thanking him for my daughters, in the span of about five minutes. If I will ever believe the way I used to remains to be seen. I’m working on it.

The mantra I repeat to myself for my own broken faith, and for my role as a special mama, is a quote from Rudyard Kipling:

“God could not be everywhere, and therefore he made mothers.”

Well. I don’t know if it’s true. It doesn’t give any clarity as to why God would allow my daughter to have such a challenging life. But it does sum up how I feel about my duties as Teagan’s mom, now and as she grows older.

To protect her from harm.

To fight for her and the rights she deserves.

To be proactive about anything that will help her progress.

To push her to try harder.

To teach her to be an advocate for herself.

To let her know there is always someone behind her.

To make her possibilities limitless.

To create an environment where she feels completely surrounded in love.

I don’t know if this feeling came from God. My faith is completely broken, and at this moment, I can’t say whether or not I believe in him. But I’m not going to stop praying…hopefully that counts for something. And I’m not going to stop working, relentlessly, with my sweet little girl.

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KathleenbiocropKathleen is an Iowa transplant with a passion for wine, the Cyclones, Harry Potter, and most of all, her family. She lives in the Twin Cities suburbs where she enjoys getting outside with her husband and two daughters as often as possible, the way good Minnesotans do. She began blogging shortly after her oldest daughter’s rare genetic disability diagnosis in 2012 as a way to cope with a roller coaster of emotions and share her family’s story. You can read more about the Trisomy 12p diagnosis on her blog at rockinglion.wordpress.com.

 

www.unveiled-photography.comThis post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!

It’s an incredible honor to introduce you to Gloria who’s sharing her unique journey to and through motherhood as part of our month-long guest post series, Special Mamas. Gloria lives in Taiwan and is a mom of four boys. Her youngest son, Russell, has Down syndrome. This is the first time Gloria is publicly writing the story of Russell’s birth and how God prepared their family for a child with Down syndrome. When I first read this post, I got goose bumps. And I’ve cried both times I’ve watched the video of Gloria and Russell at the end. Not only do I adore children with Down syndrome, but I adore Gloria’s heart. What a beautiful woman and mama she is. I’ve never met Gloria, and I’d never engaged with her online prior to this series, but I’m convinced our paths were destined to cross. Enjoy, friends. This is one special mama. 

Gloria1“Today is the last day before we know for sure if our son has Down syndrome.” 

This was the opening line of my journal entry on September 20, 2013. This was the journal entry where I was going to pour my heart out about all that God had done in the previous nine days of waiting. I intentionally did not journal during those ten days, because I wanted to be focused on intimacy with God alone. I had begged God to let those ten days be a time of true and raw emotion. I wanted to experience any grief, any joy, any pain. God answered this prayer and allowed me to feel emotion in ways that would leave me feeling exposed and protected all at the same time. God knew I needed this. He had proven Himself to be infinitely more gentle and tender than I could have ever imagined prior to walking this journey of Russell. God showed me treasures about Himself that I had not yet experienced in my walk with Him. He showed me that there is no Scripture, no promise, no miracle that is unattainable for me as His child. God, in His great love and for His glory, started preparing our hearts for the arrival of our fourth son, Russell, long before I was even pregnant with him.

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Back in the summer of 2012, I read a blog post that changed my life and my heart forever, If Not Us…Then Who? This is the post that God used to open my eyes. The scales fell off – hard. And so began my unexpected heart’s journey to orphans with special needs, specifically those who have Down syndrome. I was wrecked for good after reading that gut-wrenching post. That summer, God continued to pummel (destroy, really) my heart for children with Down syndrome. Clive and I saw children and adults with Down syndrome everywhere in America that summer. Water parks, baseball games, Sunday school, concerts. It was almost becoming comical. I journaled on June 11, 2012: “So, it’s been a little weird…everything I have heard, seen, and come across. Maybe God is just softening our hearts to Down syndrome and special needs…who knows. I no longer want to say, ‘I could never adopt a special needs child.’ I now want to say, ‘Lord we want whatever you have for our family, and we trust that you will teach us, guide us, and take care of us.’” Little did we know what God was up to and how much He was going to enrich our lives.

In 2012, during my pregnancy with Russell, God started giving me glimpses and stirrings of what He might be preparing our hearts for. One of the greatest miracles was that when I was just six weeks pregnant with Russell, Clive spoke in high school chapel and publicly surrendered his heart about special needs adoption to God. Neither of us would have imagined that, inside of me, God was already growing our own precious son with Down syndrome.

On April 16, 2013, I wrote: “This past Sunday, my friend said that she wanted to remind me that even though this is a fourth boy, this a NEW season, and that this boy is so special. It brought tears to my eyes as she prayed for me. It still freaks me out a little bit though, the urgency with which she has been praying for me and this baby, and the “new” thing….just still wondering about Down syndrome.”

That same friend emailed later with “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:18-19

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On April 18, 2013, I journaled: “Clive and I keep talking about how we can’t help but wonder about this child having Down syndrome with all that God has done, the prayers, etc. I am even hesitant to journal about it, because I don’t want to imagine what God is up to. His ways are so far above mine. But I just know that if this baby is healthy or not, it feels like God is preparing us….for what, I don’t know. Again, it’s hard for me to write about. I have chills as I write it. I told Clive I don’t EXPECT our child to have Down syndrome, but it’s more that it wouldn’t come as a shock if he did. And I will be a little surprised if he doesn’t? I know that sounds crazy. I am just amazed at the ways that God has shown us His love for us this year. He keeps blowing me away and I am so thankful it never gets old to Him.”

Prior to Russell’s birth, we had two possible names. One was for our son if he didn’t have Down syndrome. My husband picked that name, and it is the name he ended up with – Russell. The other name was the name we would give him if he had Down syndrome. Russell was born on September 5, 2013. You might have heard my screams of pain all the way in America when he was coming. The symbolism of the brief labor (only 5 hours) and intense pain, followed by sheer joy and contentment is not lost on me. It mirrors what I have experienced in my journey of Russell after he was born. When Russell came into the world, he did not look like he had Down syndrome. I looked at Clive in the recovery room and said, “He doesn’t have Down syndrome.” Clive said, “Oh Fred” (that’s my nickname) and smiled at me, like he was saying, “Of course he doesn’t.” I asked three doctors in the next couple of days if they were sure he didn’t have Down syndrome. They would all do a quick top-to-toe scan with their eyes, look at the palms of his hands, look at his eyes and ears, and confidently assure me that he did not have Down syndrome. So, after 24 hours of waiting to decide on his name, we named him Russell. Because our son did not have Down syndrome.

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After we took him home, there was still a gnawing in our hearts. He didn’t latch on for breastfeeding well. He had extremely low muscle tone. He never cried. After having three other children, I knew that was out of the ordinary! And the more he was opening his eyes, the more we were noticing the almond shape that was just a little more upturned than his Asian-American brothers. One day, I was holding him on my lap and looking up symptoms of Down syndrome. While reading, I didn’t feel overly concerned. Then I got to the last sign. A sandal gap. I had never heard of it. So, I looked it up. A larger than normal gap between the first and second toes. I unsnapped his sleeper and held his feet up. And my world stopped. He had it. On both feet. Oh. My. Word. My son has Down syndrome. This IS what God was preparing us for. He WAS speaking to us! It felt surreal.

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Ten days after Russell was born, we headed to the hospital for the test results. We had prayed together and read Scripture together before leaving the house. We were nervous. But yet, we also were about 95% sure. I cried the whole way to the hospital. This was our last day to hold Russell as our son without Down syndrome. I didn’t want to step over the fragile boundary of time into knowing our Russell with Down syndrome. I cried the whole way home from the hospital too. But they were tears of complete awe and praise of God. I remember how when I was pregnant, I told Clive that if we found out our son had Down syndrome, my awe of God and all that He had done for us would overshadow any other emotion I would have. And I felt that so much as we were driving home together. Clive felt the same way too. God had given me this verse on September 16th while we waited for Russell’s test results: “Give thanks to the Lord, call on His Name; make known among the nations what He has done. Sing to Him, sing praise to Him, tell of all His wonderful acts. Glory in His Name; let the hearts of those who seek the Lord rejoice. Look to the Lord and His strength; seek His face always. Remember the works He has done, His miracles…” I Chronicles 16:8-12. I knew this this verse was going to be our story and I couldn’t wait to make His name known.

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Russell was no less perfect with Down syndrome. He was even more breathtaking actually. And our love for him felt tender and fierce at the same time. We had no context for who Russell with Down syndrome was going to be. But then he smiled for the first time. And laughed for the first time. And those waves of suffocation turned into breaths of fresh air and rejoicing. We can’t believe he is ours. He brings us pure joy—our whole family. His brothers adore him and he adores them. God adores Him.

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On my balcony reading my Bible one day soon after finding out Russell had Down syndrome, I read Isaiah 41:20: “so that people may see and know, may consider and understand, that the hand of the Lord has done this, that the Holy One of Israel has created it.” Another verse He blew me away with was Isaiah 42:9: “See, the former things have taken place, and new things I declare; before they spring into being I announce them to you.” God had prepared our hearts! It seemed too good to be true. And I told Clive that I felt like God’s favorite. I truly did. And I realized that that’s how God WANTS me to feel! You are God’s favorite too, you know? Know that whatever He is doing in your life, whatever He is preparing you for – nothing is wasted. None of it. Russell is our constant reminder of God’s goodness, of God’s love, of God’s gentle voice. Russell has changed our lives forever. For the much, much better. Truly, there are no words. There is SO much more to this story, but those stories will have to wait for another time. For now, be encouraged by God’s goodness, His faithfulness, and His promise to speak to us.

Our Facebook post on September 29, 2013, said: “Love, joy, and sorrow meet as we let family and friends know that our son, Russell, was born with Down syndrome. We are so in love with him and in awe of God, who miraculously, gently, and lovingly prepared our hearts and our family for Russell.”

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“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.”  Isaiah 42:16

“Nothing exceeds thy power, nothing is too great for thee to do, nothing too good for thee to give. I ask great things of a great God.” ~The Valley of Vision

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GloriabioGloria Hsu is married to her middle school sweetheart who she met at an international school in Taiwan. She was a family nurse practitioner while living in the U.S. She and her husband moved back to Taiwan five years ago, where her husband is a high school guidance counselor at the school they grew up at, and Gloria is the co-founder and director of Pregnancy Support Center (PSC) in Taichung. Taiwan has one of the highest abortion rates in the world, and is a nation in great need of healing and freedom. Gloria loves being a mother to four boys, all of whom God has gifted uniquely. Her fourth son has Down syndrome. It is no coincidence that God gave them a child with Down syndrome in a country where over 95% of babies with Down syndrome are aborted. Gloria’s passion is hearing God speak and seeing Him move in her own life and in the lives of others. You can join her Facebook page at Unseen to read and share everyday stories of God speaking and moving. Visit her PSC website at pregnancysupport.tw (currently under construction) and PSC Facebook page. You can also visit her blog that will be up and running soon with more about the journey of Russell, PSC and adoption at lifeisamist.wordpress.com.

www.unveiled-photography.comThis post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!

It’s an honor to introduce you to Lita who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Lita has four children. Her daughter, Abigail, was born with a medical condition called Arthrogryposis, as well as an “unknown neuromuscular disease that causes severe low muscle tone.” This is the first time Lita is sharing her story in written form. It is, of course, incredibly challenging to communicate a life-changing journey in just one short blog post, but Lita met the challenge with this marvelously honest, beautiful and hopeful post. Soak it all in. This is one special mama.

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After twenty four hours of labor, and over six hours of pushing (yes, six!) I finally gave birth to my second child. Whereas our first born remained unnamed for two days in the hospital, this baby girl was named within minutes of birth. My husband proudly announced, “Abigail, which means my father’s joy.” They placed her on my stomach and I noticed the nervous glances of the nurses as they gently touched her outward-turned hands, bent wrists, and ramrod straight fingers. I had whispers of thoughts, but never voiced them: Was something wrong? Before words tumbled out, they whisked her off to the NICU.

The days that followed brought a whirlwind of nasal feeding tubes and struggles with feeding, but also a peace that was grounded. While I was holding her in the NICU when she was two days old, the visiting geneticist came and gave us a tentative diagnosis of an obscure condition and a bleak prognosis. We were shocked and numb. She handed us her business card as she left and we never heard from her again. For months afterwards, the memory of that experience generated frustration. Not only was this geneticist’s diagnosis wrong in the end, but even more upsetting was that she had dropped this bomb on us and walked away. Later, I realized that it is not unusual to be mad at the person who brings you the first devastating diagnosis. They get the brunt of your pent up anger at the crushing news. My countenance started to change imperceptibly with feelings of despair after this and comments made by our brusque pediatrician. My grounded peace from trusting in my Heavenly Father in those beginning days started to break apart and sift through the sieve of my neediness. The peace was replaced with a demanding and scared, “Help me NOW.”

The NICU was quite a distance from my floor and the nursing assistants would push me in the wheelchair (this recovery was more difficult than my previous c-section) until my last day when there was a shortage on the new shift. My new nurse told me pointedly to walk or wait until someone was available later. I cried out, “I can’t walk that far and my baby won’t be released until she can start nursing or learn to drink from a bottle. I need to get to the NICU for her next feeding!”

My tears were angry. I felt alone.

She begrudgingly deposited me at her bassinet way in the back past the medically fragile preemies. Once she saw Abigail, however, she decided to stick around. And hearing of my struggle with trying to nurse, she determined to get me help. She became my advocate, bringing in specialized help, and I was grateful. Asking for assistance and even firmly taking hold of what I needed for my baby was not wrong. I am a strong woman; this is what kept me from falling apart during those next few years. But the fear deep in my heart and lack of trust in God exposed my demanding orphan mentality instead of seeking what we needed from a place of rest and peace that is found in Christ.

Lita4Easter Sunday, we brought Abigail home when she was four days old and my husband had a pink stork sign pounded into the dirt in our front yard with her name, weight and birthdate, but no length. As I was with my little baby in our bedroom later that day, I heard a boy walking past our sign say to his mother, “Why don’t they have a length?” The Mom was puzzled and as they walked on, a lump formed in my throat. I hurt for my girl. See, her hands weren’t the only issues. Her hips and knees were in a flexed or bent position like a little baby still in the womb, but these fixed positions called contractures were so tight that they couldn’t get her length at birth. Also, her feet were turned in so that the soles of her feet faced each other. Club foot.

We were sent home with no splints (moldable plastic orthotics with velcro straps used to correct feet), but given the directive to bond with our baby before we started weekly castings (plaster) to help straighten out her feet. In between feedings, I would lie on the bed and stroke her face and sing how beautiful she was to me. Why, yes, Lionel Ritchie was pulled out from the 80s. But his simple words were a balm to my heart. When the next several weeks brought multiple appointments, tears, fighting tooth and nail with our insurance company to go out of network, more tears, therapy appointments, splints, round the clock nursing/pumping/bottle feeding, multiple plaster casts, my calm in the maelstrom was to lie down in the quiet moments, look into her eyes and bond with my little girl. It is so easy to be engulfed in this new world and miss the sweet moments of cuddling and loving on your baby. During these stressful first six weeks, we finally had a diagnosis of Arthrogryposis and an ‘unknown neuromuscular disease that causes severe low muscle tone’ and we were well on our way to entering this brave new world of having a child with special needs.

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The neurologist said due to the creases on her palms, the pregnancy developed normally until an “insult” to my pregnancy at 18 weeks caused a disruption and yadda yadda yadda. All I heard was, “What did I do wrong?” If only I didn’t eat all that tunafish and drink tap water during my pregnancy. I wonder if it was the power lines hanging over our neighborhood that caused it. I was convinced she was “fearfully and wonderfully made” until something happened in my pregnancy that caused this disruption, because God is good and He wouldn’t do this to his child, would He?

My husband gave me a gem by Joni Eareckson Tada, When God Weeps: Why Our Sufferings Matter to the Almighty, which was a blessing as I mined the deep questions of my soul:

Is God good?

Is He Sovereign?

He was able to change the outcome.

He wasn’t surprised by her having Arthrogryposis.

It took a few years for my soul deep down to grasp this truth in all of its myriad of ways.

I went from thinking in those early weeks of her life that medical science can “fix” Arthrogryposis to the reality check given by one of her doctors: “Why are you concerned about her walking?  What she needs is to work on transfers. Transferring from bed to wheelchair is what she needs for independent living.” The reality of a lifelong disability started to seep in. Devastating on one hand, it freed me from having any unrealistic expectations that would be dashed against the idol of normal. I started savoring God’s gentle mercies as everything new she did was an absolute gift and a surprise.  God was very good to show us His amazing power throughout this time. The gospel came to life in a new way in our lives. The Lord used our struggles to refine our faith. My fist shaking took me on a journey of anger, sin, brokenness, redemption in the quiet recesses of my heart.

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When she was very young we worked on getting her to hold her head up, which she finally did for a few seconds at twelve months. Next, sitting up with assistance and once that was mastered, scooting on her bottom to get around. Then, standing in a special contraption with full leg braces and a walker. Once that was conquered, she started taking a step or two while we were holding onto her the whole time. Around age four, she started walking with her long leg braces (KAFOs) with her knees locked straight. She had surpassed her therapists’ and doctors’ expectations. This unknown neuromuscular disease was not progressive like a dystrophy, and she was getting a bit stronger. She has a will to do whatever it is that she wants to do. Ice skating? No problem. Marching Band. She’s got it. Her will is formidable.

There is a beautiful story that is given to every special needs family after the birth of their baby. Well, maybe I exaggerate. I think it should be given out to every family. “Welcome to Holland” by Emily Perl Kingsley is the story of a planned trip to Italy, but somehow landing in Holland which is analogous to having a special needs child. When I read the line in the story where everyone else is busy going back and forth to Italy, it struck me:  Why us? Why not any of my friends? How come everyone else has a few hiccups in their pregnancies and everything works out fine? Looking back at my childish response, I cringe as I know there are women who have a silent pain they bear of miscarriages, infertility and bearing children prematurely. My question has changed to “Why not us?”

We have come to appreciate the tulips of Holland more than the espressos of Italy.  We know more of God’s goodness than we ever would have, a goodness that sometimes gives us what we would not ask for but nevertheless receive as a refining gift.  And Abby is a delightful and thoughtful girl who blesses us in so many ways.  Our flight was diverted that day over 16 years ago, but it landed just where it was supposed to.

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Note to Readers: This is my perspective and never have I shared it in written form. It was incredibly difficult to condense it down to a blog post, but I couldn’t leave you without giving you some updates of my fabulous girl! Abby is hilarious, an intellectual and a foodie who is finishing up tenth grade. She enjoys Doctor Who, playing with a local school’s marching band and wishes she could travel more internationally! We are blessed beyond measure to be her parents. This isn’t just a nicety, but truth straight up!

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LitabiopicLita has been married to her loving husband, Justin, for almost twenty one years. They have four kids who range in age from 7 to 18 and the initials of their first names spell out the curious little name of her blog, www.JADEintheparke.com. She is shines in front of a group and loves to encourage. She welcomes you to come along for the ride on her blog at jadeintheparke.com and follow along on Instagram at @momtoJADE, Twitter at @momtoJADE and like their Facebook page at facebook.com/jadeintheparke.

www.unveiled-photography.comThis post is part of a month-long guest post series titled Special Mamas. The series runs all May and is in honor of moms who have unique journeys to and through motherhood. To read all 13 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. At the bottom of the post, you’ll find all guest posts listed and linked for easy reading!

As many of you know, my younger sister has a diagnosis of schizoaffective disorder, bipolar type. I’ve featured Tiffany five times on this blog, and recently invited her to be a regular contributor. At this point, our plan is to have her write a guest post once a month, although there may be occasional months we skip. In her guest posts, Tiffany will document a single day in her life. For the most part, Tiffany has been stable for the past 4 1/2 years thanks to medications and hearty support from our parents, a psychiatrist, psychologist, and other professionals. My hope is that these posts will raise awareness of what it’s like to live with a mental illness. But I’m also hoping these posts will help readers recognize that we all have hopes, dreams, challenges and mountains to climb regardless of our mental health status. Without further ado, I’m pleased to introduce you to my sister, Tiffany. 

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When you have mental health issues, every special occasion has one thing in common. WARNING!

I just had my 35th birthday. This year, I wanted to reclaim my identity, my unique fingerprint that makes me an individual. If there is a day any of us should be happy, it’s our birthday. This year, I did not want to be happy all day. I wanted to be purely me.

The prelude to my birthday became a combination of emergencies and celebrations.

The night before my birthday, my kids were getting sick. I rushed my one-year-old, Xander, to urgent care. The doctor diagnosed him with a lung disease called RSV. The doctor said it could be months before the problem cleared itself. My four-year-old daughter, Raegan, was complaining about her ear, but refused to go to the hospital. The morning of my birthday, blood and puss were coming out of her ear. We went into the ER and found out she had a broken eardrum. A significant sized hole was in her ear. They recommended that we come back in ten days for an ENT visit. We followed the recommendations and the hole has healed.

The day of my birthday, I was preoccupied with problem after problem, but felt calm overall.

I watched Facebook pretty closely. I wanted to see who stopped in to say hi. I started to overthink the birthday wishes that were coming in, as I do in a number of situations. Do I push “like” now or later? Do I comment? So in the morning, I started to comment on the birthday wishes. All of the sudden, my phone went dark. A couple hours later, I gave the phone to Raegan and she figured out the malfunction. Then I was able to read and appropriately respond to the Facebook messages again.

The day must go on and hopefully get better! After all, it’s my birthday.

Mid-afternoon, I went to a sports bar with my dad. One of my favorite activities has always been going on “dates” with my dad, so the day was definitely getting better. We communicated our views on life as we often do when we go out together. I started drinking Red Bulls and proceeded to do so the rest of the day, which led to an all-night Red Bull high.

Finally the main event, with my parents babysitting my sick kiddos. I went to a traveling art pub event. The events feature different artists who guide you through making a masterpiece. I arrived early and picked a great seat up front. I had extra room to paint since nobody sat next to me. I painted and painted, and felt as though I was painting out emotions from the day. My painting was used as an example for the class about halfway through. The finished product hangs in a prominent place in my apartment, the bathroom. What a way to end a hectic day. I felt good about getting care for my kids and accomplishing something great at the same time.

The day didn’t go as planned, but I adjusted to the various circumstances that were thrown my way. My birthday felt complete with the cards I received, one from my sister and one from Raegan. My sister’s card said “You’re original, unique, and loved for everything that makes you, you.” Raegan made her card with the mental health professionals that work with her at school and at home. It said “I love mom because she gives good hugs, takes me to dance and piano, and cooks good food.”

This is a glimpse of a day in my life. I’ll be highlighting other days in the future. Thanks for reading!

Tiffany

  1. Emily says:

    I would love to attend the next traveling art pub with you when they are in our area!

  2. Joie Ehmke says:

    Love, love, love! You are my hero Tiffany! <3

  3. Rachel Arntson says:

    Thanks so much for sharing, Tiffany. Hey, could you take a picture of the finished picture you painted? It looks amazing.

  4. Robert-Carolyn Schwaderer says:

    What an interesting day!

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