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Monthly Archives: May 2015

Broken But Still Fighting

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!

Elphaba, Attitude and a Glass of Water. | Rocking Lion - […] change is about anger.  When I guest posted on DivineintheDaily.com for the “Special Mamas” series about being mother to a child […]June 22, 2015 – 8:47 pm

Tom Baunsgard - Wow such a moving story! Kathleen, Thanks for sharing your story and Keagan’s with us. You are a very “Special Momma” who knows how deal with a devastating diagnosis and realize the blessings.May 30, 2015 – 2:56 pm

Nicole Marie Newfield - Teagan is amazing and unique and an immense blessing to of course your family but also to so many more! I am so honored to know her and your family. Prayers for peace in your heart. I know myself that the journey with special needs is not an easy one.May 29, 2015 – 8:44 pm

Trusting in Life

It’s a pleasure to introduce you to Mariah who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Yesterday marked two years since Mariah’s husband passed away from cancer. At 34 years of age, Mariah was a widowed mother of two daughters, ages two and four. Today, Mariah’s not just sharing her story; she’s letting us in on the ups and downs, the emotions, the challenges, and the newfound life perspectives she’s gained since her husband’s passing. Please extend a warm welcome to Mariah. It’s a true honor to host her story of loss, grief and loving life on this special anniversary.

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My husband, Greg, died of cancer on May 26, 2013, at age 46. He took his last labored breath as I drifted off to sleep next to him, still holding his hand. I was 34 and we had two young daughters, ages two and four. His diagnosis, treatment and last days of life began and ended in three short months. It was so quick and intense that we had a hard time keeping up. Many times over the last two years I’ve shocked myself with the realization that he’s gone. As a 36-year-old mother who still feels like a child myself sometimes, I’m terrified that the responsibility of parenting falls directly on me. Just me. A few days after the funeral, the girls and I were swinging out in our big backyard when a wave of deep grief washed over me. I felt so small, alone and abandoned and had started sobbing. I looked up at them. They had both stopped what they were doing and looked at me as if to say, “You’re all we’ve got, Mama. What do we do now?” I remember smiling and reaching out to them. I had no clue what to do next, but for some reason I trusted myself, I trusted them and I trusted that Greg would always be with us and anything we did would be okay. Succeeding would be okay. Failing would be okay. And something in between would be just right. And the first thing to do was to make dinner so I took their hands and led them inside.

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“To love at all is to be vulnerable. Love anything and your heart will be wrung and possibly broken.” – C.S. Lewis

I met Greg in 2001 while working at an advertising agency in Minneapolis. We became friends, playing basketball with co-workers on our lunch breaks.

A couple years (and lots of love and life) later, we bought a house in Wisconsin, got married in our front yard and started a family. Squirmy was born in 2008 and Squeaky in 2011. As Greg used to tell each of the girls, Squirmy made us a family and Squeaky made our family complete.

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We had a happy and relaxed life together. I was lucky enough to stay home and Greg worked second shift so our days never felt rushed. We didn’t take anything for granted when Greg was healthy and talked a lot about how lucky we were. I remember leaving holidays or get-togethers being so thankful that out of all of the people in this world, I got to go home with the three of them. There were a lot of morning cuddles in our bed, singing and dancing in the kitchen and sending Daddy to work with little girl kisses spilling out of his pockets.

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“Grief, after all, is the price we pay for love.” – David Malham

Shortly after Squeaky turned two, Greg developed a stomach ache that never went away. All the tests pointed to lung cancer…stage 4. It took a month of intense and unsuccessful radiation and chemotherapy before Greg was put on hospice. Most of May 2013 was spent at home, making the most of our last days with him.

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We were very open and honest with our children about what was happening and what was ultimately going to happen. It was more than heartbreaking to tell them that their Daddy was going to die soon. “You know…like that bird we saw in the grass at the park or that tree lying on the forest floor. Everything that is living eventually dies, it’s called a life cycle. And it happens to people as well. You understand what dead means, right?” It was bewildering to be saying these words and explaining this concept to my babies.

One night when Greg was rapidly worsening, I told Squirmy that he would be dying soon. He had just given her and her sister each a butterfly box full of his kisses that would last their entire lives. As I was tucking her in, she asked me, “Mama, is Daddy going to die tonight?” I told her, “I don’t know. But yes, baby, he might.” She nodded and snuggled in while I rubbed her back, tears streaming down my face.

He did die that night and I woke the girls early the next morning to say goodbye. Squirmy sat next to me with her head buried in my lap. Squeaky focused on all the adult tears, taking it all in. One final kiss and Greg was wheeled out our front door. The girls played with their cousins and I crawled into our bed with the covers over my head. Now what?

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I loved every wonderful and horrible minute of my life with Greg. I like to think the love we shared was so strong that it was only meant to last seven years. I loved to be the one holding his hand as he took his last breath because he was still there and he was still mine. The day he left us, things got a little tough. We had lost our most important person and now he wasn’t even here to help us through the grief. And so we learned to lean on each other. My girls are so supportive of each other. I try to take credit for how caring they are, but deep down I think they came that way and the life they’ve experienced so far has given them a wisdom surpassing my own.

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“The sad thing is, nobody ever really knows how much anyone else is hurting. We could be standing next to somebody who is completely broken and we wouldn’t even know it.” – Unknown

Right after Greg died, I took every opportunity to tell people that my husband had died. Two years since he’s been gone and I still do this. I feel like I was stabbed in the heart the moment we heard the word cancer. But none of my scars are visible to the outside world. And because of this, I need to tell people. I need to tell people so they will be gentle with me and my kids. Because I’ve been on this side of a partially hidden pain, I feel a lot more empathetic to the quiet struggles of others. People I do not know, and even people I do know, are facing much more than I could ever hope to understand. So I try to treat everyone with as much kindness as I can. And by doing this and expecting kindness in return from others, I haven’t been let down.

There’s a lot about being a young, widowed mother that’s hard to explain. Some is obvious because I just can’t be two places at one time. If we have to go somewhere, we all go. My sweet Squirmy hasn’t been carried into the house after a family night out since she was four. If Mama is having a bad day, there’s nobody to take over. Sometimes I don’t want to explain these things because I don’t want to complain. After all that has happened, I know we have a great life and I have two beautiful children inside and out. They’re a daily reminder of their amazing father who took every opportunity to tell them, “You are wonderful. And I love you just for being you.”

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“If we all threw our problems into a pile and saw everyone else’s, we’d grab ours back.” – Regina Brett

I’m also coming to terms that it’s not all about me anymore. I have lived the last two years looking deeply inward on our family because it’s what we needed. But now I’m ready to shift the focus to others. I see friends and family going through their own struggles. I see horrible tragedies and injustice in the world and I know that I have no more or less pain than anyone else. Just different. I will always be thankful for Greg and the life we had with him.

All of this life experience is making me who I am and I’m enjoying my growth. I used to be a lot more doubtful of myself and decisions I made. But now, I trust in myself. I trust in others. I trust in my children. I include them in making decisions that will affect them so that they can give input and have the time to adjust to change. I try not to shelter them from the world. When they ask questions, I answer as truthfully as I can.

I took the girls to England this spring to spread some of Greg’s ashes. I was terrified to take this trip because the world is scary, isn’t it? I booked the tickets, had a little panic attack and then I did a lot of planning, keeping only wonderful thoughts in my head. The day we spread Greg’s ashes was cold and sunny and the wind was wild, but it swept him up the hill like he belonged there. I knew our Greg would have absolutely loved the adventure. This wide-open world that he left for us has opened the door, allowing us to become the people we are meant to be.

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“In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you.” – Buddha

I never imagined that this would be my life. I’m learning that I love the comfort in relinquishing control of what happens in life. I feel as if I’m driving a car on perpetual cruise. All I can do is steer us to the best view possible, rolling down the windows to feel the sun and the wind and point out the beauty to my girls along the way. I try to show courage and empathy and a feeling of excitement about the adventures life has to offer.

Even now, I’m building us a new house and I’m welcoming a new relationship. It’s all terrifying and thrilling and overwhelming, but it feels so right. I know that my children are doing great because sometimes they are sassy and happy and sad and brilliant and moody and wise and they don’t listen to me and I have to remind them one million times to put on their shoes. I think we’re right where we’re supposed to be.

I still sometimes feel the gaze of my daughters, a little older now, asking with their eyes, “What do we do now, Mama?” I’m sure it will change as the years go by, but right now I think I know what I want to say to them: “Take my hand and follow my lead. You already know that life isn’t fair. It can be beautiful and horrible and we will constantly have to adjust. You ARE wonderful, just by being you. And if you can continue to be brave and kind, trust yourself and not blame anyone else for what happens, your life will be magnificent.”

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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!

Debby Patrick - I never knew people still have powers and make things happened this way. My name is Debby Patrick am from U S A. my Husband Williams John left me for another woman for three months’ ever since then my life have been filled with pains sorrow and heart break because he was my first love who dis virgin me when i was 21 years old. about two years ago, A friend of mine Kate Pillps told me he saw some testimonies of this great Dr ogududu that he can bring back lover within some few days, i laugh it out and said i am not interested but because of the love my friend had for me, she consulted the great priest on my behalf and to my greatest surprise after three days my boyfriend is going to call me for the very first time after three months that he is missing me and that he is so sorry for every thing he made me went through. i still can’t believe it, because it highly unbelievable it just too real to be real. Thank you Dr ogududu for bringing back my lover and also to my lovely friend who interceded on my behalf, for any one who might need the help of this great priest here is the email address drogududuspellhome@gmail.com OR you can call the great man on {+2348101197342}October 15, 2015 – 9:08 pm

Debby Patrick - I never knew people still have powers and make things happened this way. My name is Debby Patrick am from U S A. my Husband Williams John left me for another woman for three months’ ever since then my life have been filled with pains sorrow and heart break because he was my first love who dis virgin me when i was 21 years old. about two years ago, A friend of mine Kate Pillps told me he saw some testimonies of this great Dr ogududu that he can bring back lover within some few days, i laugh it out and said i am not interested but because of the love my friend had for me, she consulted the great priest on my behalf and to my greatest surprise after three days my boyfriend is going to call me for the very first time after three months that he is missing me and that he is so sorry for every thing he made me went through. i still can’t believe it, because it highly unbelievable it just too real to be real. Thank you Dr ogududu for bringing back my lover and also to my lovely friend who interceded on my behalf, for any one who might need the help of this great priest here is the email address drogududuspellhome@gmail.com OR you can call the great man on {+2348101197342}October 15, 2015 – 9:08 pm

Shirley Lossing Mertes - Mariah…I watched your love for Greg bloom and develop into something so unique! You are an amazing woman and deserve the best that life can offer for you and the girls. Be happy…you are doing a fantastic job as a Mom. Happy for you in your new adventures in life! Hugs to you and the girls.May 29, 2015 – 10:47 am

Amy - You’re welcome, Rachel. :) Glad you’re enjoying the series. So glad I hosted it.May 28, 2015 – 7:43 am

Brynn DeHay - Mariah, you are wonderful. And I’ve always loved you just for being you! Your little squirmers are like a stellar hybrid of Greg and yourself! You are also a poetic writer I am certain everyone enjoys reading your work.May 28, 2015 – 3:06 am

Rachel Arntson - Wow! This is totally amazing. What a wise woman you have become, Mariah. And I hope that your life experiences to come will be filled to the brim with happiness and contentment. Thanks so much for sharing.

And Amy, these Mom stories are so great. Thanks for doing this.May 27, 2015 – 4:48 pm

Kathleen Krantz Petersen - This one is a doozie. Thank you Mariah for sharing and thank you Amy for gathering all these stories of love. <3May 27, 2015 – 1:31 pm

For His Glory and Our Gain

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!

Lise Westergard - Thank you for sharing, we also have our own little miracle with Downs. She brings so much joy and love to our families.May 29, 2015 – 3:14 pm

Mary Steadman - Thanks for sharing your story. No doubt it will bring comfort,encouragement and strength to many.May 29, 2015 – 1:43 pm

Julie Seaman Moore - I had the privilege to experience part of this story in person, and Gloria, you truly have helped all of us increase our faith. Thank you for staying so near to God and drawing us to His heart. We are blessed by you and the glory you are giving to God!May 29, 2015 – 10:39 am

Danielle Barnes - I love this post Gloria Marshall Hsu. Thanks for sharing how amazingly God prepared you for this amazing journey.May 29, 2015 – 4:34 am

Ruann Marshall - Hi Amy, This is Gloria’s mom, over here in Michigan. I know all that it took for Gloria to find the words she wanted to “publicly” share her sacred experience before, during, and continuing on after Russell’s birth. I just wanted to tell you that I am so grateful it happened here, on your blog, where your heart to help us all find our deepest relationship with the Lord and His purpose for us is the perfect place. And the story looks
so beautiful! Thank you!May 27, 2015 – 3:56 pm

Like and Unlike Any Other Day

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The day started like any other. Or maybe not so much.

Like any other day, we woke up early and got the two oldest ready for school.

Unlike any other day, they took a few pictures with daddy before getting on the bus.

Like any other day, Seth spent a bit of time on his phone, then a bit of time doing “a little” work.

Unlike any other day, I flew around the house, maintaining strict attention to what remained on the morning’s to-do list.

Clean powder room. Check.

Spot clean disgusting blotches of food and gunk off the main level floors. Check.

Clean main level floors. Check.

Clean windows and glass in whole house. Check.

Put clean sheets on Cooper’s bed (a.k.a. guest bed). Check.

Finish cleaning the kids’ always disgusting bathroom. Check.

Like any other day, I didn’t feel adequate for this housekeeping job. I wasn’t sure it’d meet any Good Housekeeper’s stamp of approval. By the time we got to finish cleaning the kids’ always disgusting bathroom, I was exhausted and had to call for Seth’s help. He changed the lightbulb over the kids’ shower, set 3-year-old Maisie up with supplies and assigned her to clean the toilet. She did a decent job, but I pointed out the fact that she didn’t get the base, that this would still be disgusting for any guest. “Ahhhh,” he said. “Big deal,” as he walked out of the room. Considering we were soon headed out for two days of follow-up appointments at Mayo Clinic for eye cancer, I had to agree. But I cleaned the toilet base anyway.

Unlike any other day, grandpa and grandma arrived promptly at 10:30 a.m. We showed them around, detailed the next two days of kids’ events, and left the house by 11:10 a.m.

Like any other day, we stopped to get some gas.

Unlike any other day, Seth bought a bottle of Propel water for lunch. Clear liquids only for four hours prior to his MRI. 20 minutes later, we stopped for Jimmy John’s. Real lunch to go, for me only.

Like any other day, we chatted the whole way there. Mostly about work. A little this and that.

Unlike any other day, we knew our way to Damon Parking Ramp, Mayo Clinic. No directions needed for this fourth trip in five months. We arrived perfectly on time for his MRI. One minute early, in fact. Seth went straight in. I sat, breathed, listened to a webcast on Iraq, and hand-drafted a blog post inspired by the lady across the way on a Mayo note pad.

Unlike any other day, we made our way to our hotel, checked in, and left within 15 minutes. We hadn’t gone on a date in more than FIVE. MONTHS. Did we need a date night, or what? After sharing a piece of bunny cake and peanut butter cheesecake at Canadian Honker, we walked a half block down and spent the next hour and a half working and blogging in peace at a coffee shop. That was followed by dinner, a trip to wander the aisles of Aldi (okay, not so romantic, but neither of us have been there before), and a movie of Seth’s choosing, Mad Max.

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Like any other day, I wasn’t excited about a violent, non-stop action movie. But I’d left most of the day’s decisions to him. After all, he’s the one with eye cancer, not me.

Unlike any other day, we scored two 3D movie tickets for $17.00!

Like any other day, Seth LOVED the violent, non-stop action movie. I didn’t love it so much, but did appreciate its artistic value, especially the drum and guitar playing dudes battling in the desert.

Unlike any other day, we went back to the hotel.

Like any other day, he went to bed before me.

Unlike any other day, we woke up in the morning, got ready, checked out of the hotel and headed over for another round of adventures at Mayo.

Like any other day, Seth picked up some coffee. I didn’t.

Unlike any other day, Seth had several back-to-back appointments. Blood work. An eye examination. Eye photography. And an eye ultrasound.

Like any other day, I worked on my blog when Seth was in each of his first four appointments. A twinge of guilt ran through me each time I broke out the computer, like I should be giving my husband 100% of my undivided attention. But those appointments were really just for him anyway. And he reassured me, “go ahead and work on your blog, stay here, there’s no reason you need to come in with me.”

Unlike any other date, we ended this fourth trip to Mayo with another visit to Seth’s specialist, Dr. G. He popped his head in the room to say “The systemic testing (MRI) came back okay.” Then he left for further analysis of the morning’s testing. We waited. Waited. And waited some more.

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Unlike any other day, Dr. G had the news we’d been waiting for since Seth was diagnosed with eye cancer in January, the news we’d been waiting for since Seth went through week-long radiation and hospitalization in February, the news we’d been waiting for since he took a whole month off work recovering and recouping. Is the tumor shrinking? Or is it NOT?

Unlike any other day, Dr. G told us he sees “very little change in the SIZE of the tumor, but the internal reflectivity has increased substantially,” which means that next time he sees us, it’s likely things will look better in regards to the tumor size, even great. Dr. G showed us a bunch of graphs of this “internal reflectivity” and how it’s changed since original testing back in January. Sure, the size of the tumor had changed very little. But it was hard to deny the difference in those graphs, the difference in the internal matters and workings of the tumor itself. Dr. G showed us another picture of the front part of the tumor. “It looks like it’s retracting, that’s better, too,” he said. Had the tumor shrunk, we would have returned to Mayo in six months. Based on this visit’s results, Dr. G recommended we return in three months. And he urged Seth to get the laser surgery he needs on his left eye.

Unlike any other day, we made our way down to Mayo’s subway level. A lovely woman was playing “On Eagle’s Wings” on the piano. “I sang that song at my cousin Doug’s funeral,” Seth noted quietly. I leaned against a column and teared up. The news we’d just received was neutral at worst, from all indications trending positive, it seemed. I wasn’t sad at all. Just filled with emotion, if that makes sense. In the comings and goings of wheelchairs and significantly sick people, children and caregivers, the woman played on. On and on, she played. She played with her head up. She observed keenly, with every ounce of her heart and soul, as people passed. She let intuition and the Spirit run straight from her heart all the way through to her fingertips. Yes, I knew it! Pure grace. Divine favor. This was the pianist the elderly woman told me about last time we were here! The woman who plays every Thursday. The woman who plays by heart, by ear. The woman who doesn’t get paid a penny, who plays according to the shifting tones of the room, who turns hopelessness to hope with simple, beautiful tunes.

Like any other day, I cried when I took it all in.

Like any other day, Seth asked why I was crying.

Like any other day, I said “I just really love this.” Yes, 24 hours have since passed. I know why I was crying. The work that pianist does at Mayo is EXACTLY the kind of work I want to do with my writing. She exemplifies my greatest life’s dream. To bring pure beauty in the midst of significant pain.

Unlike any other day, we went back up to the Damon Parking Ramp, got in our car, and drove down and out of this fourth trip to Mayo.

Like any other day, we got another lunch to go, talked, drove, and hugged Seth’s parents and our kids when we pulled in the driveway.

Like any other day. Unlike any other day.

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This blog post is part of a series I’m writing about our journey through my husband’s eye cancer. If you’d like to read the rest of the posts in the series, click here and you’ll be connected to the first post I published about our journey. All posts in the eye cancer series are listed and linked at the bottom of that post for your convenience. You can also access the series anytime by clicking the apple picture on the right sidebar of my blog’s home page,www.divineinthedaily.com.

Amy Adams - beautifully written. Keeping you close in thought and prayer.May 29, 2015 – 3:13 pm

Monica Anderson Palmer - I started reading this on my phone, I didn’t have my reading glasses on so I got about two lines into it and quit-it was too hard to read. That struck me a bit with guilt, in light of eye cancer. I’m continually annoyed when I go to read something and can’t (at least not without my readers on). Today, I read this post from beginning to end and am still amazed as always by the life story you create with words. I’m thankful for my sight. I’m thankful for positive results with Seth Pederson eye cancer. So very grateful! I told Seth he’s a super hero…and I mean it! So are yoU! You are both unlike anyone else I know. Thankful to know you both. Praying that continued healing takes place and does so to the FULL. Hugs!May 25, 2015 – 1:19 am

Denise Korman - Amy, I truly believe the strength, love and courage that you and Seth have on this long journey and your exceptional belief and strength in God will carry you both through ! We always hear life still goes on and I don’t have to tell a wife, Mom of three on and on that it does, and in a way it’s good thing ! You and your family are always in my prayers ! I can’t wait to meet you, such an exceptional woman in a few weeks ! God Bless !
DeniseMay 25, 2015 – 1:18 am

Amy - Thank you, Linda. You are such a sweet encouragement to me.May 24, 2015 – 10:19 pm

Dan Johnson - Wow – thanks for taking us on an emotional, personal, powerful journey. Your story made this day unlike any other for me. We are so happy for the good report and trust for even great days ahead. Go bless!May 24, 2015 – 4:03 am

Linda Johnson - As always you’ve accomplished your writing desire so perfectly. Thank you for sharing this moment with us. ((hugs)) & continued prayers!May 24, 2015 – 12:20 am

Carol Femling - As I was reading this, I too welled up with emotion. I couldn’t help think something really crazy!! Amy, you know your Grandma Hjelmhaug, ( my mom), played by note and by ear and could play any song beautifully without looking at the piano keys. This sounds ridiculous, but it made me think of my mom’s exceptional talent coming through this special woman.??? Maybe your grandma was playing just for you at that moment???? Good thinking, anyway. :) She would’ve LOVED to have played at a place like Mayo Clinic and especially for you two!! We’re all still praying and praying for Seth and keeping an upbeat attitude. Love you all so much!! XOXO Mom :)May 23, 2015 – 11:15 pm

Tom Baunsgard - Amy, Thanks for sharing this with us! Like any other day….. Blessings Abound!May 23, 2015 – 10:06 pm

Nicole Marie Newfield - Wow, I love how this is written and the messages within. Prayers continue!May 23, 2015 – 10:04 pm

Motherhood is Not For Wimps

It’s a pleasure to introduce you to Emily who’s sharing her unique journey to and through motherhood as part of our month-long guest post series, Special Mamas. Emily is mom to a sweet one-year-old girl. She’s a single mom. She’s a mom who lives with mental illness. She’s a mom who’s been through paternity testing. She’s a mom who understands that little girls and “big girls” need fathers and father figures. She’s a mom who recognizes her weaknesses and applies her strengths. She’s a mom who experiences challenges and joys like any other mother. I’m proud of her for her honesty, her bravery, her willingness to share her real-life story with us today. Please extend a warm welcome to Emily.

Emily7There was a good chance I could be pregnant, so I wanted to take an at home pregnancy test. My friend and I went to the Dollar Store and purchased a test. She stayed with me for most of that day, as the results were positive. The next day, I went in to see my doctor and a positive test was confirmed. I had been living with my boyfriend, but knew there was a chance the baby could be someone else’s. Excited and hopeful that the baby was my boyfriend’s, I quickly called him at his place of work to relay the news.

My water had not broken, so I scheduled a day to be admitted into the birthing unit to be induced on a Monday. After 42 weeks of pregnancy, Leona Marie was born on Wednesday, February 5, 2014, at 2:00 p.m. We were not discharged until Friday of that week.

After doing a paternity swab, we found out that my boyfriend was not my daughter’s biological father. We have managed to stay together regardless of that fact. I do not have contact, nor receive any support from my daughter’s biological father. To me, being a family does not mean it has to be by blood. It’s those who support one another, care for each other, and stick by one another that have the greatest meaning. I need someone in my life who loves me for who I am and cares for me. Leona is part of me, therefore she is part of my package deal. Having a man that is an involved dad is really important and necessary, someone who wants to enjoy the things I like to do from time to time, and be a father figure to my little girl.

I love being a mom and I love my daughter whole-heartedly. Motherhood has made a great impact on my life and overall well-being. It is rewarding for me to watch Leona grow. I am blessed to have my family, and to have my dad to take care of Leona while I work throughout the week is an even greater blessing to me.

But being a single mom and living with mental illness has also been a struggle at times. I am currently living with my boyfriend who lives within a mile of my parent’s house. To take care of myself and another human being is a lot of work. With various appointments, my work schedule, and activities I am involved in, it can be quite a load at times. Although, support from family and friends and people in the community is a great thing for me and Leona. I have come to realize that I am growing as a person just as Leona is growing up as well. Being her mommy is rewarding to me. I have a lot of fun when I am with her, and I love with an open heart.

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I would like to thank my dad, mother, brother, sister, and mostly God for all that I have been given. I really feel like there is a purpose for me in this world, and that I have a beautiful gift by being a mother to my daughter. After all, without love where would we be?

I would like to share this quote…

“A love of life does not mean a mom who is always happy, it means a mom who strives towards experiencing the exquisite beauty of a song, the warmth of a smile from a loved one or stranger on the street, the gift of a nourishing meal, or the magic of a sunrise.”

I would also like to share a prayer I say to my daughter at night…

“May angels guard you through the night and keep you safe ’til morning light.”

Emily

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!