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Holding Out Hope for a Better Life

My name is Erica. I am a 38-year-old public school art teacher. I have been teaching for over 10 years and love my job. Unlike many mothers with children with disabilities, I have managed to maintain my career. I feel very blessed to work with over 500 students in our town in Minnesota.

I have been married since 2006. My husband, Scott, is an outside sales person for a title company. He is the most amazing father. He has stepped up, when he could have run away. I admire his strength for completely doing this with me day-to-day.

Our only son, Grant, was about 6 when his first serious round of self injury began. He has some level of intellectual disability, autism, and Avoidant Restrictive Feeding Intake Disorder (ArFID) which resulted in a g-tube getting surgically placed in August. Below is just a small piece of my life story. I am writing regularly at erica873.wixsite.com/grant and share updates on Facebook at www.facebook.com/deargrant if you would like to read more.

Amy is my friend and neighbor. She was kind enough to let me share my story here today. We are seeking donations for our medical trip. Grant is on a wait list for a hospital in Baltimore, Maryland, called Kennedy Krieger. Please watch the video at the end of this post, and check out my site for more details if you are in a position to help. Thank you.

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I was cleaning up my art room, like I always do. Pandora was playing “Fire and Rain” by James Taylor. I know this song really well. I might be able to sing along without the lyrics without them in front of me. Can you hear it now?

” Won’t you look down upon me, Jesus …”

This song triggers a variety of emotions. I sing along. Just in my head. I don’t need someone to walk in my classroom and hear me.

Taylor sings …

“You’ve got to help me make a stand
You’ve just got to see me through another day
My body’s aching and my time is at hand
I won’t make it any other way”

I push the tears back. I want to let them flow at this moment, but I don’t and I won’t. I have let them flow before. I have had deep, ugly cries in the last six months. I have done this in front of my son. I have done it alone. But, I have never let myself cry like this in front of anyone else. This song is triggering this feeling, but I push it down.

I feel regret and anger when I have cried like this in front of Grant. It makes me cry more. My anger builds with every piece of this of this journey. The tears flow easily if he hurts me and I am not talking about emotional pain. I have never had a verbal argument with him. He is not considered “non-verbal,” but he is not functionally conversational either.

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He has attacked my hair so many times I can’t count all of the incidences. Even in one day, he has come at me over 20 times. It’s like he is trying to remove chunks of my hair. I am trained in something called “CPI” so I know how to release his hands from head. I have to press on his knuckles. My scalp hurts after he comes after me. After a summer of hair pulls, I eventually sacrifice my long strands for a chin length “do.” I resent him in that moment at the hair salon. I tell myself it’s just hair. It is not me or who I am as a woman. It’s just hair. I eventually purchase hair turbans off of Amazon to protect my poor scalp. Cutting my hair doesn’t prove to be enough to keep him from hurting me.

He has tried to hurt my eyes. This is how it all started. He would push his fingers into my tear ducts. It happened so quickly. It’s hard to explain how anyone can get to your eyes so quickly.

Today he mostly kicks me. He hits me. He has bruised my eye area. He has scratched my skin and, more recently, he has learned how to head butt. This might be the worst new behavior. It comes out of nowhere. I can be putting on his diaper or he can be sitting on my lap. I might lean over to fix something and his head, with a helmet on, comes at my face so quickly. I can’t get out of the way. I bawl.

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There was a day where he hit me so hard, I question if there is blood running down my face. I luck out, it’s only mucus. My nose feels broken regardless. It’s hard to hide my emotions. Tears flow easily. I want to hide. I can’t show him how upset I am in these moments.

This head butting issue really irritates me. On Halloween, his head hits my mouth. I thought he had loosened a tooth. I am not sure if he just caused me serious dental issues. I am hysterical. I grasp my face in horror. WHAT DID HE JUST DO!? How can a 9 year old be this violent? He stares at me as tears make my mascara drip black lines down my face. I am flushed. My lip is busted open this time. I have not overreacted. I might have my teeth still, but that was truly painful. I fall to the floor sobbing. He just stares at me. He might have said something like “mommy sad.” Yes, Grant. Sad is only the beginning of the emotions I feel in this moment.

Deep anger fills me. I don’t lash back. But, every cell in my body wants to fight. But, I can’t. There is no point. He doesn’t understand what he is doing. He just sees his mother crying. To him, this is interesting. So he will do it again. I have sealed that destiny with my outward emotions. But, I can’t stop in these times. I am getting hurt. I am hurt. I cry. I am so unbelievably tired of this.

Attacking me…this only a piece of what is happening in my home on a daily basis. Some days are worse. Some are better. I ask myself constantly “What is worse than this?”  I mean, I quite literally in my head run through a game called “What is worse than this situation?” We have to find answers. We have to move forward. I remind myself that we are lucky he is alive. We wait patiently for his turn at the hospital. I’ll do the best I can with each day as it comes. Maybe tomorrow will be better. Maybe. I will hold on to the hope I must keep in my heart for the three of us for a better and easier life.

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Through the Darkness of Our Challenges, the Light of Joy Prevails

It’s a great honor to introduce you to Dawn who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Dawn’s daughter, Taryn, has a rare genetic abnormality which has resulted in severe neurological issues, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. Dawn is a strong mama with a big, tender heart. She loves her daughter mightily and has fought to the ends of the earth advocating on her behalf. Dawn hopes that she is “a good enough mom for this precious girl.” I don’t know Dawn, but I can tell you with certainty that when I received this photograph of her with Taryn, I was convinced from the warmth in her eyes and her calm, but confident demeanor, that this is one amazing, incredible woman, one amazing, incredible mama. This is the first time Dawn is telling her story in written form. Thank you, Dawn, for sharing with us. May you be blessed in the sharing. 

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Every year, Mother’s Day affects me differently. Some years I embrace the celebration and I love to do all the traditional things – brunch and time together with extended family (mainly my husband’s side) – and other times I struggle with the whole idea and just want low key and no pressure. I think it comes from the fact that I don’t have my own Mom to celebrate, or even the memories of a loving relationship with a Mom to reflect back on. As Mom to my beautiful daughter, Taryn, who has so many complicated medical conditions and intellectual delays, the rollercoaster we are on literally takes me up and down day after day. This year has been a hard year, and I find myself not wanting to celebrate much.

When my husband and I were ready to start a family, I felt excited at embracing the idea of being a Mom, and hopefully to be a more loving and caring one than I had. Our journey took quite a turn though. At 26 weeks gestation, we learned during the ultrasound that our baby was extremely small, had several heart defects and some sort of mass in her abdomen. I was also surprised to learn I had begun preterm labor which resulted in many visits to the ER, a lot of terbutaline shots to stop the labor and eventually an admission to the hospital at 34 weeks for complete bed rest and an emergency delivery at 35 weeks. I realize what a whirlwind it was between the time we found out about our baby’s issues in utero to the delivery that I think I was numb throughout that whole time. I’m not really sure I ever had a chance to process what was happening or what we were about to have before us.

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Taryn Joy, our beautiful 3 pound 12 ounce bundle of Joy was here! Due to Taryn’s medical needs, she was assessed in the OR and I was able to see her for just a moment before they took her straight to the NICU. I had already made Chris promise to go with her so he could be there with her and of course report every single detail back to me. Once I was moved to recovery, it felt like forever before Chris returned with the Neonatologist for an update. Taryn was doing well, but they were waiting and watching a lot so we would know more as time went on. My room was three floors down from the NICU and the next morning I was so impatient to get up and see her. I hadn’t even had a chance to hold her yet and it felt like so much might have happened overnight. When I finally got up there, there was a moment of pause. She was so tiny and she had all these tubes and wires, I had no idea how to even pick her up or hold her. When the nurse got her out of the isolette and laid her in my arms for the first time, I felt love I never knew before. Having to learn how to feed her and do the temperature, weight, and diaper change became my new normal every three hours for the next few weeks. We were so thankful that her heart defects did not present as significant of an issue as they had expected, and no open heart surgery was needed. We were mainly focused on her feeding and gaining weight. After spending five weeks in the NICU, we were finally able to bring her home. Little did I know how scary and real it would soon become.

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Without monitors to tell me she was ok, I found myself panicked all the time if she was breathing, if she was eating ok, if she was eating enough, if I was able to care for this tiny little person. I also realized how alone I felt. Sure, Chris was amazing. But this is the time new moms have their moms to turn to for advice, support or even just reassurance, and without that someone to turn to I began to doubt if I could be the mom this baby needed. Nobody showed me how to do this, how to be a Mom, much less a Mom to a baby who needs even more love and care than we were expecting. All the books I read throughout my pregnancy did not cover this scenario. This is where I had to turn to Faith and I had to work on my belief that I was given this child because I could do this, or at the very least I could learn how to do this.

I was so grateful I was able to be a stay at home mom because soon our lives became dictated by doctors’ appointments, therapies and surgeries. The first few years we focused on trying to address her medical needs all the while giving her the early interventions to get her development on track. We were heartbroken when it became clear her development was not catching up. We soon learned that there were more issues with Taryn’s brain structure and that her cognitive and developmental outlook were now in question. We intensified her physical therapy, occupational therapy and speech therapy, hoping we could help her learn whatever skills are possible. Despite the struggles, Taryn managed to surprise us along the way and we seized every opportunity to celebrate her achievements – her first steps at age three, trick or treating with neighborhood families and Taryn using a switch device to say “trick or treat,” to her having an augmentative communication device to make choices. When we think about how much is working against her medically, to see her grow, even if it’s small at times, is the Joy that reminds us of the beauty this child brings to the world.

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As Taryn grew, we learned that her medical conditions were far greater than we ever could have imagined. We found that Taryn has a rare genetic abnormality which has resulted in severe neurological issues including epilepsy, severe intellectual/developmental disabilities, neuromuscular issues, G.I. issues, common variable immune deficiency, vision issues, and cardiac concerns. We balance visits among 13 doctors, immunoglobulin IV treatments every 3 weeks, several major surgeries and more questions than answers. I have had to learn how to be a strong advocate for her, learning how to talk with medical professionals, navigate insurance companies, manage many medications, find the right school environment, all while trying to make sure I appreciate each precious moment and that in addition to being her caregiver, that I can also just be her Mom. Taryn will need full-time caregiving each and every day for the rest of her life, so we are constantly adjusting our world and life to ensure her needs are met and she has the best life possible.

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When I sat down to write this post, it made me take a pause and realize just how much this beautiful angel has tapped into a part of my heart and soul I didn’t realize was there. Her laughter and the love she shows inspires and grows my heart day after day, and without question there is nothing I wouldn’t do for her. There is something so incredibly powerful about her ability to communicate without words. Her touch, her smile, and her beautiful eyes say so much.

I am often told that from the outside, I look like I have this all down and that I make this look easy. I think sometimes that makes it hard for those on the outside to really understand just how hard and challenging our world is. Most of the time I love that I am someone people count on to get things done, to organize everything and who can help problem solve, but sometimes, some days, I just can’t. It’s hard to feel warm and fuzzy all the time when you know in reality that given all the medical conditions my daughter faces, I will most likely have to say goodbye to her. With every new medical problem, that reality comes full force at me and I am reminded every day of the fragility before me. Each day I have to work so hard internally to put forth a strong, happy and resilient front so that we can continue to tackle the hardships before us, while also taking each and every moment of joy and grace that Taryn gives us. Let me just say how exhausting it is to constantly be switching between fear, sadness, anger, joy, gratitude and love every hour of every day. I struggle with having Faith that whatever God’s plan is, that it will be ok. I struggle with understanding how my own mother couldn’t find a love in me like I have with Taryn. And every day I hope that I am a good enough Mom for this precious girl.

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But then, like I have most of my life, I pick myself up and I use my hurt, anger, fear and LOVE to drive me to do everything I can for Taryn. Because the truth is, Taryn has given me more in her 11 years than I ever could have imagined. She has given me purpose, taught me a level of patience and perseverance I had no idea I possessed, and opened my heart and soul up to a love I have never experienced. I watch her struggle every day to do basic functions and adapt because there are a lot of functions she cannot do. She endures pain beyond what we can imagine, and more medical interventions than most people do in ten lifetimes. Yet she is so happy and loving and she touches those around her in so many ways. I am constantly in awe of her. I truly am grateful to have her and for every moment, the good and the hard. My husband has been a huge blessing and support in his unwavering commitment to our family, his love for Taryn; his Faith is what I turn to in order to draw strength and comfort. I often wonder if God knew I needed Taryn more than she perhaps needed me, and I try to hold on to that feeling when I am faced with the worry of a life without Taryn.

So this Mothers Day, I relished in Taryn’s giggles, savored the hugs and kisses and embraced the rare day of calm.

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This post is part of a mSpecialMamas2016_smallonth-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 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

Audra Small - Thank you Dawn for opening your heart and sharing such a touching story. It felt like it was one story of a larger book in which many of us have written our own chapters, but only in our minds. It was beautiful to read yours so artfully communicated. Thank you. Always wishing the best for the kiddos and their parents.May 24, 2016 – 6:54 pm

Summer StClair Gipson - In tears reading this story! I’m proud to know such an amazing woman! Beautifully written!! ❤️May 24, 2016 – 3:29 pm

Nicole Bobda - What a beautiful testimony. Thank you for being so transparent and sharing your life as a mother to this sweet daughter of yours. You are an inspiration! God bless you, your sweet Taryn, and your husband.May 24, 2016 – 2:26 am

Karen Sharman Robinson - Beautifully written Dawn! I’m so fortunate to call you friend. And blessed to witness the friendship that Taryn has shared with my daughter. I often use you as an example of one of the best advocates I know when it comes to fighting for Taryn’s best interests. <3May 23, 2016 – 9:07 pm

Nannette Salasek - Dawn, so beautiful to read your story thru your eyes!! You are a true inspiration to us mamas and I feel so blessed to call you friend.May 23, 2016 – 3:56 pm

Liz Fuller - Beautifully written and amazing woman!!!May 23, 2016 – 3:42 pm

Jennifer Johnson Camp - Amy, thank you for inviting Dawn here. Dawn, your faith, endurance, tenacity and courage all testify to the amazing love Jesus has for you and your Tayrn. Thank you for sharing a piece of your story. Bless you as you continue to love with His strength and hope in you. You have encouraged me so much.May 23, 2016 – 1:47 pm

Mark - Super amazing person and family. Thanks for sharing.May 23, 2016 – 10:19 am

When Your Special Needs Family Wears You Thin

It’s an honor to introduce you to Aprille who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Aprille is a mom to two children. Her son has multiple behavioral diagnoses, and her husband is an Afghanistan veteran who struggles with anxiety. As you can imagine, this has been an incredible challenge for Aprille. On the best of days, she feels “like [she’s] barely managing.” She’s had to “continually look within and evaluate [her] own mental and physical state.” Aprille is facing the challenge with courage and bravery, doing the best she can to love and nurture her family while also caring for herself. Please extend a warm welcome to Aprille, and would you leave a word of encouragement for her today? It would surely be a blessing.

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I don’t believe there is anything all that “special” about me; but the situation I find myself in as a wife and mom is highly unique and challenging.

In 2014 my son, then just-turned four, was diagnosed with multiple behavioral diagnoses: ADHD, adjustment disorder, and sensory processing difficulties. Since then, he has seen multiple mental health providers and maintained a rigorous therapy schedule – including six months of inpatient behavioral therapy, weekly occupational therapy, family counseling, and intensive in home services.

Mothering him is hard and always has been. Now that we have a team of mental health professionals on our side, a medication regimen in place, and a decent handle on his diagnoses – it’s a little bit easier than it was two years ago, when all we had were questions and doubts. Our son succeeds best with a rigid and predictable schedule, little emotion when dealing with his behaviors, consistency with rules and consequences, and a whole lot of love and attention.

It’s draining. Every day, even on the good days. 

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Also in 2014, my husband, an Afghanistan veteran, was diagnosed with generalized anxiety disorder. The VA gave him a disability of 60% for the mental health challenges that he faces, and designated me as his “caregiver” – a position that I am actually paid a stipend by the government to fill.

Loving him well is hard and always has been. Now that we have a good mental health professional on our side as a couple, a medication regimen in place, and a decent handle on his diagnosis – it’s a little bit easier than it was two years ago, when all we had were unmanaged stress and anger. My husband succeeds best with a rigid and predictable schedule, little emotion when dealing with his anxiety, a lot of help with tasks he finds challenging, and a whole lot of love and attention.

It’s draining. Every day, even on the good days.

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In the therapy sessions we have for our son – they coach us on consistency, reining in our own emotions, and using appropriate communication. It’s hard to do that as his mom. It is doubly hard or worse for my husband who is struggling to manage his own emotions. How do you parent a child facing severe mental health challenges when you also face your own? He writes about that more in detail here.

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The two of them are so much alike. Not just in their challenges, but in their personalities. They are both extroverted, crave adventure, and love feeling important and smart. Thus, they approach every situation with the need to be in control. They have strong feelings about how things are supposed to go and rarely are those ideals the same. They love each other with a fierceness known only to father and son, yet rub against each other like sandpaper. When they are apart they miss each other deeply, yet when they are together they struggle to get along. This complex dynamic is further complicated by the year they spent apart when my husband was in Afghanistan during my son’s infancy. He left behind a three-month-old baby and came home to a walking, talking toddler who already had a wild streak and trouble self-regulating.

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They both look to me as their stability. The one to calm them when their anxiety is heightened. The one to fix it when they can’t figure something out. The one to make them feel all better when they are out of sorts. The one to give them 150% attention and affection.

I look at this situation, and I tell God, “I don’t get it. Why why WHY would you pick ME for this job?” I’m highly introverted. I deal with physical weakness and chronic fatigue. I lack drive and time management skills and struggle to stay on top of even the basics. I hate to cook and clean. My love languages are Netflix and silence.

On the best of days I feel like I’m barely managing.

And that was before we decided to have another baby. 

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I love our newest addition with my entire being. By far, he seems to be the most normal one of the family. He has a sweetness and serenity that gives me a calm to breathe in when I hold him. He seems to be more introverted, like me, and yet is still ALL BOY – silly, noisy, and messy. As an 8-month-old infant, he also demands a great deal of my attention and affection. Some days, having a third person to care for sends me over the edge.

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I’m basically one person – one very, very tired person – doing the job that I feel requires at LEAST three people. The Michael-Keaton-Multiplicity approach looks quite appealing a lot of days. Certainly some clones would help!

I’m running on fumes and have been for several years now. I don’t know how to do this. I really, really don’t. But I don’t have a choice. I have three people depending on me for life and sanity so I must go on – hoping that I can make it through to the day when they all need me a little bit less.

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When mental health challenges and special needs parenting wear you thin, how do you go on?

Self-evaluation

I have to continually look within and evaluate my own mental and physical state. Earlier this year I started to have angry outbursts toward my family members and struggle when the baby started crying. I did a lot of yelling and screaming. It was then I got my butt to my doctor and asked for anxiety medication. While I do not have a mental health disorder like my husband and son do, caregiver stress and secondary traumatic stress/compassion fatigue are very real challenges that I most certainly deal with on a daily basis. This manifests itself in my own battle with depression, hopelessness, anxiety, physical fatigue, trouble focusing, and anger.

Constantly evaluating what I can do to make that more manageable is key. Looking within to see where I need to set physical and emotional boundaries with my husband and son. Working with them to become less dependent on me is a challenge, but something I am forced to do so I can care for them when they need me the most.

Self-care

Zoloft has made all of the difference in the world. I’ve been on it for three months now, but I wish I’d gotten on it three years ago. I also see a mental health professional on my own twice a month. I pay for childcare for my baby at the YMCA. I have someone from church help me clean my house about once a month. I pay extra for convenience foods so I don’t have to spend so much time cooking. I threw out my houseplants. And most recently, I began formula-feeding my 8-month-old exclusively breastfed baby. (BEST DECISION EVER!)

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Schedule slashing

Anything I don’t absolutely have to do socially, I don’t. I used to frequent a lot of mommy groups and go on a lot of playdates, but right now I’m in a bit of a hermit phase. My time at home is SO precious to me as it is the only chance I get to recoup so I can keep on keeping on. I do try to go out with friends at least a few times a month, but I keep those moments limited. And I’m not ashamed to cancel social plans last minute if I am simply too overwhelmed or depressed to go out.

Support

My two best friends are both special needs moms and veteran or military wives. We keep a running conversation going on Voxer, a smartphone app, which we started two years ago now. We talk about our kids and our husbands and all of the challenges that we face. I literally would go insane without them. I also have met a lot of other special needs moms through my blog who help to encourage me, and I them, along this journey.

Stimulation, growth, and creative outlets

While there is much I say no to because of the challenges I face, there are a few things I say yes to, for ME. It would be far too easy to lose myself in the roles of caregiver and special needs mom because I’m simply too tired and strapped for time to do anything else. But I make sure to take time for things that bring me joy. I write on my blog weekly and manage an active presence on social media. I recently started working as a virtual assistant for my best friend and fellow blogger. I dabble in Bible journaling. And next week, I’m going back to school to finish my associates degree so that sometime in the next fifteen years I can finish my educational path by becoming a licensed clinical social worker.

It’s crazy, yes. These are things I don’t NEED to do, and my life would probably be a little bit less stressful if I didn’t do them. But they make me feel alive. They remind me of who I am apart from caring for my family. They distract me when I’m depressed or anxious.

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Like I said above, I’m not all that “special.” I’m an average gal who has been thrust into a harder-than-average life just trying to figure out how to survive one day – make that one moment – at a time.

I love my family. They are beautiful and wonderful. And as hard as it is to do my job, as much as I want to run away to check myself into a hotel or pysch ward on a weekly basis, as much as I fantasize about beach vacations – I know that God picked me to do this job. Why? Heaven help me I don’t know. But He did. And as the all-powerful, all-knowing, benevolent Father of all, He must have a darn good reason.

So I am going to continue to approach every day holding onto that belief. I’m going to keep looking for beauty in the midst of the mess. I’m going to keep trusting that in HIS time, He makes all things beautiful – even mental health challenges and special needs.

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Aprille DonaldsAprillebioon is a twenty-something stay-at-home wife and mom. She blogs over at Beautiful In His Time, her personal chronicle of finding God’s beauty in the mess of her marriage, mothering, and faith. It is her hope that you will be encouraged to find God’s beauty in your mess too. You can also find her on Facebook, Twitter, Pinterest, and Instagram. If you are a special needs parent, you can subscribe to an encouraging newsletter that she sends out quarterly.

 

SpecialMamas2016_smallThis 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 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

What I Couldn’t Tell You Then

Today, it’s a joy to reintroduce you to Cindy who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas! In May 2015, Cindy wrote a guest post for the Special Mamas series titled “My Life in a Week.” At the time, Cindy and and her husband had three biological children and three adopted children. Their three adopted children originally joined the family as foster children, and their youngest biological child has Down syndrome. While the Special Mamas 2015 series was still running, Cindy sent an email letting me know they had just gotten word that they were going to be adopting another sweet boy into their family! The story was literally getting better by the day. Cindy was SO wanting to share the news in her guest post, but couldn’t yet because of legal proceedings. Today, Cindy’s sharing the REST of the story, the story she couldn’t tell us then, the story of how they came to adopt a sweet boy with special needs. Enjoy, friends! This is one very special mama, one very special family.

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Wow. We have experienced a year since I shared “My Life in a Week” and what a year it has been! We have had mountain-top highs as well as ocean-trenches lows. Our days have been both monumental and monotonous. At some point, I am sure, God will even our keel and send us on a consistent path. Crazy as it may sound, I hope that is not any time soon. So as the Hubster, Allie (child number four), Allie’s bestie and I begin the six-hour trek back home from our celebratory trip to Disneyland, my mind, yet again, gets the opportunity to wander down the path of self-reflection and appreciation of all my Lord has walked us through these past twelve months.

I first refreshed my memory of my 2015 Special Mamas contribution to this blog, “My Life in a Week.” Goodness, that WAS a week! But I wasn’t 100% honest about all that was happening at the moment my post was published. With everything we had experienced, I was forced to leave out the most monumental moment of 2015. It was an email, actually a series of emails which had unexpected results.

You see, it was Sunday, you know, the day after Special Olympics regional games for Jillie, the day after Joe woke up with vomit on his pillow, the day after my oldest, Eric, returned to camp from the ER to serve in the kitchen for the Young Life youth and the day prior to the return of Emily from her Senior trip to Disneyland. It was Sunday that I sent an email to a person who provided support to our family for Jillie.

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In that brief email, I asked if a family had come forward to love on the little boy I had been praying for the past month or so. It was a short, simple request for just a moment of information. I hit send and off my message went to await a response the following day. That response would be that no one had fully stepped up to the proverbial plate. If I remember right, the jokingly, but somewhat serious words, “Do you want him?” were included in the reply. I answered with a “Maybe we can help you find someone?” To which the word was “Can I give the DCS worker your name and number?” I countered with “Of course.”

It was the next email that caused me pause. The content of this note was the name and phone number of the DCS worker. That name was very familiar to me. You see, this social servant is the same person who brought Angel and Allie to us a little over nine years ago. That name spoke volumes of what God was expecting of our family.

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After the Hubster and I spent time seeking wisdom from our Lord, we decided to step out into the void before us. A void that didn’t seem to exist when I was stripping that bed, cheering at the top of my lungs, or holding back tears of fear the day prior. As we progressed, it felt as if solid ground rose up to meet each step we made into the unknown.

The following day meant physical therapy for Jillie. I chatted about our experience and Jillie’s friend’s eyes began to sparkle. “His name wouldn’t be…” she asked. How did she know? We don’t live in a huge community, but what are the odds? It turns out she had provided physical therapy for this little guy before he had become the most recent sibling to enter the system.

This contact soon became a source of sanity for me as I could gain a little information from her because the boy was no longer on her caseload. Once we expressed our interest in adopting this sweet little blonde bundle of cuteness, our first two contacts were unable to share anything with us. An inconvenience and source of paranoia for this inquisitive mind.

As our faith-filled journey proceeded the following day, it was confirmed that the little guy would soon be experiencing his third birthday in a few weeks, in May. “Hey, we don’t have a May birthday. The Schulze family has February, March, April, August, August (again), September, October, and November covered, but not May.” This fact is something we would often joke about with those who would ask if we were done “having” kids yet. Our reply was that our calendar was almost full. So May had provided yet another solid step to our ever-confirming course toward child number seven.

The writing was on the wall. We knew what the task at hand was. Now to get the job done. We endured a few weeks of chaotic mystery as we were trying to figure out how to continue this process. A home study would very soon be necessary. While I was searching for someone to help us out in that area, I remembered that it is fingerprint clearance and reference letters that tend to prolong progress. A friend came to our house at the drop of a hat with his “kit” to obtain the necessary prints and advise us as to the paperwork needed. We began our list of potential letter writers, making sure we had people whom had collectively witnessed all aspects of our lives. Thankfully each one was eager to provide their view of us as individuals as well as parents and a family. Actually, not to boast, but many sweet friends insisted on providing endorsements of their own. In fact, the gentleman we found to help us with our certification cut off our reference count at nine letters. Speaking of him, it was a note of interest that his grandchild had been a teammate of Eric’s when he was on rowing crew in high school. (Can we say confirmation again?)

The mechanics were all in place. What control we thought we had was just that, a thought. The future of this little boy was in God’s hands just as it had always been. The month now would be June. We met the home study deadline in a month without a hiccup, which is rare. Now we wait. We wait for an adoption selection meeting. Yes, God didn’t make it a slam dunk for the Schulze family. At one point we were one of four families who had thrown their hats into the adoption ring for this guy. We kept going forward. We kept trusting. We kept hoping.

By the time decision-making day came, the Schulzes were one of two families remaining. We were able to see photos of him for the first time when the team that rallied professionally around this amazing little guy had sent the families a six-page questionnaire to answer about the responsibilities of raising this particular child. We answered to the best of our ability. Ok, I may have been pretty impressed with my responses but that was an encouragement to my parenting insecurities. We knew what it was going to take to add kiddo number seven. We were aware that his needs would be different than those of a typical child. Little lives that result in foster care need some specialized attention. Lives that were blessed with an extra 21st chromosome need additional care. Yes, our future son was born with Down syndrome, a trait that the Schulze family celebrates, a trait that big sister Jillie would share with her new little brother. The entire Schulze family was enthralled. The entire Schulze family was encouraged. The entire Schulze family was on edge.

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My bestie made sure she was with me while I was waiting for “the call.” Her emotional support kept my insanity at bay. I don’t know what I would have done without her. With her, I was pacing and chatting and running all possible scenarios through my anxiety-filled mind.

It was noon on that hot Friday in July. I had been unsuccessfully not watching the clock when I heard my ringtone. I am pretty sure I thought the answer was negative at first. Then the voice on the other end confirmed what God had been confirming in our hearts from that Monday in April. We would need to check the month of May off of our available birth month calendar.

The Hubster and I would be meeting our fourth son the next day, Saturday. Except for Eric who was on a missions trip in Belize, all the siblings would meet on Sunday. Needless to say, we immediately fell in love.

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Transitioning to our family began and had to move quickly because the foster family would soon be leaving on vacation. We became a household of nine by the end of July. By the end of September, we became a family of nine.

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Today, Mother’s Day 2016, I received the most precious gift. My youngest child looked at me and called me “Mama.” My heart be still. I don’t think there is anything he could have given me that was more special.

I could fill another blog post with the adventures of the Schulzes since adding Ben to our family. Maybe I will, on my next long trip as passenger in my minivan. Until then, I will keep living my life just the way I like it, Never Easy – Always Good.

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Cindybio2“My, you have a lot on your plate.” I can’t tell you how many times I have heard those words just in this past week. Reality is, I do have a lot to keep me busy and they all have two legs. Children have been keeping me out of trouble for over 20 years now. This period of time has provided experience with youth ages pre-birth to legal adulthood, specializing in bonding issues, chromosomal disorders, allergic reactions, illegal substance exposure, emotional challenges, as well as prolonged potty training and a myriad of other skills. With experience like this, one would think that I have “seen it all.” With the arrival of child number seven, though, we have added sneezing fettuccine noodles, pooping water balloons, and shutting belly buttons in the door (yes that really happened). I did have a limited amount of prior education including babysitting, Special Olympics volunteer, Early Childhood Education major, and preschool teacher. In May 2013, I was first asked to share my family story for a Mother’s Day blog series which gave me the penchant to begin blogging on my own. I am proud to be part of Special Mamas 2016. Join my family adventures on my blog, Never Easy – Always Good, at nevereasyalwaysgood.blogspot.com. While you’re at it, “like” my page on Facebook at facebook.com/nevereasyalwaysgood.

SpecialMamas2016_smallThis 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 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

Dealing with a Rare Disease Diagnosis

It’s an honor to introduce you to Lisa who’s sharing her unique journey through motherhood as part of our month-long guest post series, Special Mamas. Lisa is a mom to three boys. Her oldest son, Micah, was born with a rare metabolic disorder. As you can imagine, it’s incredibly challenging to communicate a life-changing medical diagnosis in one short blog post. So today, Lisa’s journeying back to Micah’s infancy, recalling the earliest of days when he nearly lost his life. Lisa met the challenge with an incredibly intimate, honest and hopeful post. Soak it all in and send Lisa a special word of encouragement for her unique journey through motherhood.

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My husband almost shouted at the lady behind the glass window. She stared back, deadfaced, then chomped her gum. “It will be at least thirty minutes.”

It was the third time we had received that same answer. Somewhere behind that door to the right was our six-day-old son who had just arrived by helicopter. I’ve always heard that giving birth is the hardest thing I’ll ever do. I believed it until I stood outside the ER and watched him being put onto that helicopter. Watched it take off without me.

Sometime later a solemn nurse led us back to his room. There were tubes and wires everywhere around his bed. A doctor, with an accent almost unintelligible, mumbled facts about a condition we had never heard of and we weren’t sure he had either. He handed us a stack of papers and left; we never saw him again. That same solemn nurse told us, fumbling for words, that Micah wasn’t doing well. I wanted to scream at her, Tell me something I don’t know. Can’t you do anything?

I sat in the rocking chair and stared at his bed. There was no offer to help us hold him and what little I knew of motherhood seemed ripped away by this unexpected day. It wasn’t a family-friendly hospital: we couldn’t just stay in his room and breathe the same air as our baby. They closed down the unit when they did surgeries or brought new children in and parents had to leave.

I could walk you to where I was sitting in the waiting room when my parents arrived. They had left work as soon as Justin called them and driven the four hours to the hospital. My dad hugged me and we sat and waited while Justin went for some food. I think he needed the fresh air and space more than the chicken.

The main hallway marched through that floor of the hospital and intersected with a perpendicular section where one side led to the doors of the NICU and the other side had parent rooms and a bathroom. While I stood in that dull hallway trying to resign myself to my baby dying, a family with a little girl pushed a new mom in a wheelchair through the main hallway in front of me. I had already figured out that you didn’t want to ask about anyone else’s story; you didn’t have enough emotional energy to carry that too.

I pretended to sleep that night in a tiny, uncomfortable bed. Some stuff, most of which I didn’t need, was spilling out of a suitcase in the corner. We had gone home and packed a suitcase before we had followed the helicopter up the interstate. We had touched all the baby things in our apartment wondering if we would still need them. We even debated making a Facebook post to notify friends and family. We didn’t because we realized we didn’t know what to say. In that crowded room with faded carpet I relived the day’s events and tried to surrender my baby to God. The night dragged on but the sun finally rose and I could see out the window, across a roof, and into the pharmacy where employees were changing shifts.

That morning was a lot like the previous afternoon except they had intubated Micah during the night. One more tube snaked its way into my little boy’s body in an effort to keep him alive. Around lunchtime I sat in a booth at Fazoli’s and stared across the parking lot at a maze of flowers that decorated the front of a nursery. It was beautiful, full of life and spring, and I felt like I was dying inside. My food sat untouched except for a few bites that I ate to appease Justin.

After we visited Micah for a while I was standing in the back hallway of the NICU when a door opened and I realized that same mama with the little girl was holding her new baby while the little girl danced around. They had unplugged the baby to let the mom hold him while he died. I cried for her, my heart splintering, while I wondered if that was in my future.

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A new resident came on shift and asked us to sign paperwork for a transfer to another children’s hospital. “There’s nothing we can do here except wait and see what happens. It won’t be good.” We signed the paperwork and sat with our pastor and his wife while they made the arrangements. When I stepped out for some water Justin told them how small the chances were that Micah was going to live. A nurse came and told us we could go see Micah before they prepared him for transport. The unit was closed because of a surgery but his chance of survival was so small they took us in the back way to see him one more time.

I stood and stared at my baby in that bed. Tubes covered him; he was so puffy from fluids that he didn’t even look like the child I given birth to less than a week earlier. I sobbed into my husband’s chest and realized I wasn’t the only one crying. The resident who had arranged for the transport stood in the corner of the room with tears running down her face.

As they prepped him for the move and started transport we walked through the parking garage for the last time. They listed him as ‘unstable and nonresponsive’ and we strapped on our seat belts. That morning we had paid for a week’s worth of parking not knowing we would be leaving four hours later. We drove down the interstate. Somewhere in front of us our child was surrounded by strangers and dying.

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Micah has Isovaleric Acidemia, a rare metabolic disorder which causes the body to be unable to break down the essential amino acid leucine. Thanks to the work of the talented staff at Cincinnati Children’s Hospital he did survive his metabolic crisis. We spent an agonizing month in the hospital with him as they performed a risky dialysis procedure to remove toxins from his bloodstreams and then allow his body to adjust to taking in food on a controlled diet again.

Anyone who has been in the NICU knows it’s a rollercoaster of emotions, a seesaw of good news and bad news. Right before we were scheduled to be released he developed pyloric stenosis and we stayed another two weeks for diagnosis and surgery when they also placed a g-tube. (A g-tube is a feeding line that is inserted directly into the stomach through the abdomen.) It was originally intended only for emergencies but he refused to drink his medical formula until he was over a year old and I fed him through his g-tube most of the time. It was a blessing and a nightmare.

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We visited the ER several times a year because of g-tube complications until he was almost five and it was taken out. It came out frequently and if we found it immediately we could replace it ourselves but a g-tube tract closes quickly and we needed medical assistance if it had been out for more than an hour. More than once, we have stood in the ER and explained to a doctor how to insert a new g-tube. We actually had one doctor refuse to replace it because he had no experience with pediatric g-tubes.

Because Isovaleric Acidemia is so rare, we know more about it than any doctors we see besides metabolic specialists. We have learned to advocate for Micah’s care because his disease is so hidden. Twice this year he has been hospitalized for complications of contracting a stomach bug. Our local hospital has been amazing dealing with us but we have had to explain the urgency of getting him treatment, which can be difficult when you arrive at the ER with a five-year-old who has thrown up three times. However a phone call from a specialist at a children’s hospital helps. Thankfully the same physician’s assistant has seen him almost every time we’ve been to the ER so we haven’t had to start at square one very often.

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Micah turned six in April 2016 and one of the biggest challenges we have faced in dealing with Micah’s IVA has been not making it his “thing” yet taking it seriously. I don’t want him to use IVA as his excuse or see it as his defining characteristic. He drinks a medical formula and eats a low-protein diet as treatment of his IVA (because the amino acid leucine poisons his body in large amounts). While I count his protein now we will be starting to teach him how to manage his own diet. There are a lot of things he can’t eat – meat, dairy, and other high-protein foods – but he loves the foods he can have.

God has blessed our family with amazing people to help us care for Micah. About a year ago, my husband looked up that resident who arranged to have Micah transferred to Cincinnati Children’s and called her to thank her. She remembered Micah and said she often wondered what happened. She was thrilled to hear he was doing so well.

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LisaheadLisa Hensley is a writer and podcaster who dabbles in other creative pursuits. She and her husband have three boys and live in small-town Kentucky. Her online space encourages women to know Christ and embrace their work. You can find her at her blog www.lisahensley.me/blog/, on Instagram at instagram.com/delighting_days, Twitter at twitter.com/delighting_days, and Facebook at facebook.com/delightingdays.

 

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This 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 10 posts in the Special Mamas series, CLICK HERE and you’ll be directed to the introductory post. There, you’ll find all guest posts listed and linked for easy reading!

How to Find Normal after Having a Baby - Delighting in my Days - […] the babies for us. I always hesitate to compare Micah’s arrival to anyone having a baby. He almost died and spent a month in the NICU, receiving a rare disease diagnosis. That’s not your average […]June 20, 2016 – 2:09 pm

5 Things Entreleadership Taught Me about Motherhood - Delighting in my Days - […] applause for making it through a day of children throwing up. Just a big pile of laundry and maybe a hospital visit for us. But God has gifted me with these children; it’s an honor to do whatever God has […]June 3, 2016 – 5:03 am

Doris Crusco Swift - Thank you for sharing your family’s journey thus far, Lisa. Praise God for Micah and for God’s faithfulness in his life. Blessings to all of you.May 14, 2016 – 2:55 am