I watched every episode of X Factor that year, 2011. A spunky, vivacious girl named Rachel Crow took the stage and stole the hearts of millions of Americans. There was something special about this girl, you could see it in a minute. She was born to perform, born to bring light to lives. She took 5th place in a competition that began with thousands, and her journey had just begun.

For Rachel found herself on tour with Big Time Rush and Cody Simpson the summer of 2012, and our family had the fortune of meeting her face to face! Rachel was kind and as lovely as could be with poise and social graces far beyond her early teenage years.

But after conversation and photographs with Rachel, my attention turned towards a familiar face standing next to the Nickelodeon representative at the door. It was Barbara, Rachel’s mom. I recognized her from X Factor clips! She stood there at the doorway quietly, unassumingly. And as I watched Barbara watch her daughter, I wondered how it would feel to see your daughter go from girl next door to childhood superstar in a year.

I knew I wanted to talk to Barbara, but Rachel was wrapping things up and the moments were fleeting. As I passed Barbara at the doorway on the way to the food line, my heart tugged to stop, but my head wasn’t courageous enough. I knew I just missed my opportunity. Rachel, her mom, and the Nickelodeon representative left to prep for the concert shortly after we returned to the table.

Watching Rachel on stage, I became even more curious about Barbara’s new reality as mom of this budding star. So when Rachel announced she was signing autographs after her performance, I knew it was my second chance to meet Barbara.

But I wasn’t alone! Thousands of teen girls flew to the back of the stadium and up the stairs to get in line for Rachel. In the middle of a seemingly insurmountable crowd, I finally made my way around to the front and asked security if I could just get through to talk to Barbara, but realized quickly that wasn’t going to happen.

So last weekend when Barbara and Rachel entered the Kids’ Choice Awards pre-party just feet in front of me, I knew I had been given yet another chance to meet Barbara!

I knew better than to think on it, so when I saw Barbara sit down at a table and Rachel head for meet and greet, I took the opportunity to approach Barbara right away.

Barbara was oh so gracious, welcoming and warm as I introduced myself as a complete stranger who was simply interested in her role as Rachel Crow’s mom. Barbara could have asked me to leave, called Rachel’s handler to get me out of her space, or had her friend send me away, but she didn’t.

At that moment, we talked mom to mom, like any two moms would chat on any ordinary day.

We talked about Rachel’s adoption as an infant, and how it was to suddenly live life in the spotlight. As I shared about our experience at the concert last summer, Barbara indicated how deeply her daughter loves her fans, detailing Rachel’s going above and beyond to give her fans as much access as possible on tour. We agreed that Rachel possesses a socially effervescent personality, and Barbara was quick to add that Rachel draws energy from her fans. In an effort to protect her daughter, Barbara guards Rachel’s schedule and accompanies her everywhere. Now that Rachel is recognized by so many, Barbara divulged how they managed some privacy and peace on a recent vacation. And last, but not least, we touched on the family’s faith and how that has kept them grounded the past two years.

When Barbara’s friend got up from the table, I became keenly aware that Barbara and I had been talking much longer than I anticipated. As I began my farewells, Rachel approached. I explained to Rachel that I’d like to feature her mom on my blog. Rachel agreed with much excitement and posed for this sweet picture with her mom.

I thanked Barbara kindly, wished her and Rachel all the best, and was on my way.

Mom to mom, we had talked, and I am forever honored and blessed to have experienced this encounter with Barbara (and Rachel, of course)!

Barbara, humble, kind and wise. Rachel, vivacious, lovable, and talented beyond her years. Only God could have orchestrated a union such as this. Years before the world knew Rachel Crow, He planned the beautiful coming together of an infant and a mom, both destined for big roles, together as family.

For he chose us in him before the creation of the world to be holy and blameless in his sight. In love he predestined us for adoption to sonship through Jesus Christ, in accordance with his pleasure and will—to the praise of his glorious grace, which he has freely given us in the One he loves.  Ephesians 1:4-6

Amy

Rachel Crow’s website can be found at http://www.rachelcrowofficial.com/. Rachel has signed a deal with Nickelodeon to star in her own musical-comedy pilot. Rachel is also lending her voice in Rio 2, slated to release in 2014! Congratulations Rachel, and may you always remain humble and true to yourself, wherever the path may lead. Many blessings to you and your mom. 

It’s Friday, which means it’s time for another Meet Me At This Moment for Five Minute Friday post! I spend the last hour of Thursday chatting it up with a group of authentic and inspiring Five Minute Friday bloggers on Twitter (#FiveMinuteFriday #fmfparty). One minute past midnight EST Friday, Lisa-Jo Baker gives us a single word prompt and we all write a blog post centered around that word. We write for five minutes, and five minutes only! In the wjords of Lisa, this is “unscripted. unedited. real.” You meet me at this moment in time…my thoughts and opinions, my joys and sorrows, my dilemmas and dreams. And I receive one of the greatest gifts ever…a regular outlet for processing and expressing my thoughts without constantly editing myself. This is my life, my perspective, unfiltered.

The word of the week is WHAT MAMA DID. 

 

Mama captured moments and put them in place to be treasured.

A lifetime of memories quietly tucked away in books.

Photo albums mama made for each of us. Her days more than busy. Too busy. But mama took time.

The baby days, little feet and piggy tails and buggies and bottles on feet. A golden birthday celebrated in a little white chair. Daddy and mama, and sister came along too.

In the early days, smiles shined brightly on the pages. The girl full of energy and spunk. The girl who didn’t care what anyone thought. She was there with all the grandmas and the grandpas and the special trips made to Disneyland and Disneyworld and all the great mountains and geysers of the states. And brother was born. So tiny in her big elementary arms.

The birthday parties, they passed one by one. Angel cakes with mountains high of frosting. Bear collections and 4-H projects and sweet girl memories with Sara and Claire and Abbey.

And as she grew, mama captured all that too. Grandma played her last piece on the piano, and the girl turned adolescent. Awkward stances turned into tennis matches and prom dances.

And she was growing into herself, she loved to dress up, even then. Some days she was curly, some days she was straight. She had life in her, but did what she was told. Concerts and recitals and musicals a plenty. The days were good and filled to the brim. Graduation in a gym with grandpa and auntie, and sweet buddy Charlie and tear-filled Jamie.

College days were here. Wisdom teeth were pulled, grandma celebrated her last birthday, and this girl-woman got engaged. Graduation and showers and a wedding in two months. A move for school, another two years, and a stadium with thousands marked the end for women who knew how hard they worked to earn that graduate degree.

Time passed, and passed some more. A baptism was on that last page. She had her first, a new chapter. A baptism meant it was time for mama to stop filling the pages. But mama? She continued to mark each day, each memory, each moment in her heart. And although pages were no longer filled by mama, a new mama had been birthed, and she did what mama did. She filled pages with a lifetime of love.

From him the whole body, joined and held together by every supporting ligament, grows and builds itself up in love, as each part does its work.  Ephesians 4:16

Amy

You are a special mama.

I hear you.

I see you.

I understand you.

I am with you.

That look, I recognize it. I see it. The way you look at your child. Your quiet, wondering eyes tell all. The way pain has settled in. What does this child’s future hold? Will everything be ok?

That voice, I hear it. Your anxiety, your worry, your being on the edge every moment. Your wondering who has the answers. Your wondering who can help me with this child? Your need to know you’re not alone. You’re not alone, that’s what you need to hear.

That feeling, I get it. That others simply don’t understand. They know not what you have been through. They know not what your child needs. They know not how to respond. Their understanding of what your child says and does is limited. Not by their own fault, but by virtue of not being you, not being in your shoes. You take not a single thing for granted when it comes to your child. Embrace that gift. Use it to hear, to see others better, more deeply. Live more fully.

That gut horror of yours, stop overanalyzing it. Did you do something wrong? Too much of this, not enough of that? Could you have done something earlier, something more, something better? Could you have prevented this from happening? Would a different parent have been better for this child? Accept this gift from me. You have done nothing. Your guilt is not warranted. Your gut leads you astray. You are the parent your child needs.

That joy of yours, that pride, I sense it. It comes overflowing in that moment. It takes your breath away. You never thought your child could do that, could be so great, could meet, exceed all your expectations. Believe it. Your child can do anything. Anything is possible. That triumph is yours. That triumph belongs to you and your child.

Because you are great.

You are courageous.

You are strong.

You are an amazing mama.

You can do it.

You can do this.

This is hard, but you are doing it.

You are doing it.

You are a special mama.

And I see you.

May the gift be yours to embrace.

But Mary treasured up all these things and pondered them in her heart. Luke 2:19

Amy

It is my pleasure to introduce you to my friend and former colleague, Nicole. I met Nicole in 2005 when she joined our early intervention team; I served as a speech-language pathologist and Nicole an occupational therapist. I felt a very natural and special connection with Nicole from the moment we met; she has such a sweet and kind soul. Today I am beyond honored to be able to share with you my very first guest post, written by dear Nicole about her precious infant son, Benjamin, who passed away in June 2011 from spinal muscular atrophy (SMA), a neuromuscular disease that is the leading genetic killer of children under two. Through Ben’s story, Nicole so beautifully reminds us that “though God can not stop all hard things, He can foresee all and interweave everything into His Divine plan to make good come of the hard stuff.”  

On September 30, 2010, my husband, Mike, and I were blessed with the birth of our fourth child, a big baby (8 lb 14 oz and 22” long) with red hair, our precious son Benjamin Michael. What an amazing moment! We had waited to find out the gender as we had with our three older girls, loving that wonderful surprise at birth, and we sure were surprised to see a big beautiful boy!

Our early days with Baby Ben were busy of course with four little ones. At the time the girls were six, almost four, and 21-months. Ben joined along in rides to school, was an audience member at dance and school programs, and observed all the antics of his sisters. A little before two months, we noticed that Ben had low muscle tone. He was not lifting his head when lying on his tummy and in fact had done better with this in the first few weeks of his life. I consulted my friend and co-worker who is a physical therapist and she provided some activities which we incorporated many times per day. At three months, I realized that Ben’s tone issues were not improving and seemed more concerning. I called to make two neurology appointments, to rule out any “scary stuff.” I called our local early intervention team to schedule an evaluation for him. I felt so strange making those phone calls, desperate for answers. I thought he might have extremely low tone (hypotonia) or cerebral palsy. I tried to prepare Mike that I thought there would be lots of therapies ahead, that he may not walk until at least 18 months. I talked with co-workers, saying I just hoped it was nothing regressive. The wait for the neurology appointments to come ticked on, and meanwhile Ben had a cold which never seemed to go away. He had noisy breathing. He had more leakage from the corners of his mouth when feeding. He also seemed to use his tummy a lot for breathing. All of these things we attributed to the low muscle tone. Our worry built as he approached four months.

A few days after he turned four months old, on Wednesday, February 2, 2011, the day began as normal. In the afternoon, Ben suddenly refused to take his bottle and was breathing with more effort then usual. We had been suspecting reflux and I heard gulps like he was refluxing. I thought I would call the doctor in the morning and talk about medicine. Mike tried to take him for a drive to calm him to sleep as we assumed the reflux was bothering him and that maybe he was getting the respiratory virus the girls had dealt with the week before. When they got back from the drive Ben had never fallen asleep and in that time he had developed a fever of 102. Mike took him to the emergency room at Children’s St. Paul while I stayed home with the girls. His breathing got more out of control and they had to put him on a ventilator. Mike called and told me about the ventilator and that the doctors were thinking there was some underlying condition going on. That is when the terror struck. As Mike’s dad stayed with the girls, Mike’s mom drove me to the hospital in the wee hours of Thursday morning, February 3. I saw my baby lying sedated on the bed, the ventilator breathing for him, so helpless. In desperation and fear, I asked the doctor, “Is there any way this is just low muscle tone?” She slowly said that she worried about a disease called spinal muscular atrophy (SMA).

The doctor asked me if I had ever heard of spinal muscular atrophy. I had never heard of it in my whole life, not in college studying to be an occupational therapist, not in years of working with kids with special needs, until the morning before at work. The other occupational therapist in birth-3 had mentioned a new child she was going to be working with who had SMA. I now know there is a reason I heard the word SMA that morning. As I heard it again with my baby lying on that hospital bed, I knew this was a devastating diagnosis. Those hours through the night were the hardest maybe of this whole story. Not knowing for sure,  dealing with the new realization that our baby may not live.

At 9 am that Thursday morning the neurologist came and confirmed that she believed him to have SMA, Type I. The geneticist visited on Friday and came to the same conclusion. SMA is a neuromuscular disease and is the leading genetic killer of children under two. It occurs in 1 out of 6,000 births. It typically occurs when both parents are carriers. 1 in 40 people are a carrier of SMA. When both parents are carriers, each baby they have has a 25% chance of having SMA. Generally the same type of SMA runs in a given family. SMA has 4 types; type I, which makes up 70% of SMA diagnoses, previously known as Werdnig-Hoffman disease, begins in infancy and typically infants with type 1 are not able to roll over, sit, or even hold up their heads. Ben had all the signs, and it was confirmed the next week when the blood test results came back. Ben was fighting pneumonia brought on by the parainfluenza (croup) virus. Babies with SMA are very susceptible to pneumonia. Despite our grief, we grasped onto the gift we hoped we were about to be given, more good time with our baby Ben.

Most of the doctors in the pediatric ICU thought he had a good chance of coming off the ventilator, beating the pneumonia, and going home for some more good days. The nurses in the PICU were my confidantes. They listened for hours as we kept watch over sweet Ben. The chaplain found me almost every day it seemed, talked with me, prayed with me. I asked her what it would be like when Ben went to Heaven. She described it as being a holy time, special, sacred. I began to think of it as being like a birth, something bigger than myself, something I could never do alone but God would be with me. Those days by Ben’s bedside were special to me because they were time I had with him, to hold his little hand, to sing to him, to pray and pray and pray for him.

The child life specialist was such a comfort to me. She helped give us the words for how to explain the disease to the girls, and for how to later explain the shortness of the life Ben would have. A friend connected with the national support group, Families of SMA, and found a mom whose daughter was born with SMA Type 1 and went to Heaven in 2006. She visited me at the hospital; I was so grateful for being able to talk to someone who really knew what I was going through and who had somehow managed to go on. My sister and friend planned a benefit which relieved financial worries. So many people sprung into action to help us with prayers, food, help with the girls, funds. We felt so blessed by everyone’s generosity.

Ben did come home after several weeks of getting better from the pneumonia and having surgery to place a feeding tube in his stomach. Ben had lost some skills in the three weeks he had been dealing with the pneumonia and hospitalization, and with the progression of the disease. He did not move his legs anymore, only his feet. He moved his arms from the elbows but could not use shoulder movement. Unfortunately SMA was one of those regressive diseases I had worried about. Ben came home with medical equipment (feeding pump, pulse oximeter to monitor his oxygen saturation and heart rate, nebulizer for respiratory treatments, vibrating percussor wand and cough assist machine to get mucus out of the lungs, suction machine as he had lost his ability to swallow saliva, and bipap mask which he tolerated during sleep to help with breathing). We had home nursing during the day and they, like the nurses in the PICU, were such blessings to us and to Ben, who loved them and shared many of his precious smiles with them. We had visits from the palliative care team from Children’s, including a nurse, social worker, child life specialist, chaplain, and music therapist. This team ensured comfort for Ben and for our whole family. In May, the palliative care team arranged for me, through the parent to parent program of Children’s, to meet another mom who had a baby with SMA Type 1 in 2003. She visited us, bringing food and gifts, but most importantly understanding.

We were so overjoyed to have the gift of more time with Ben, and he had so many good times! He smiled all the time and would do a silent laugh/chuckle when tickled, during peek-a-boo, or when his sister Ellie would throw his treasured balloons up in the air! He only cried when he was tired. He loved music therapy, especially the guitar. Ben loved to mouth light-weight toys that we placed in his hands, bat at Weebles toys, and knock down block towers with his little fist. He loved books and would pay attention to them for so long. He loved when Mike would take hold of his arm and pretend that Ben was punching him. He loved to play with my hair. He loved to watch the trees blow outside the living room window as he lay on his comfy pillow playing. We took many pictures and videos which are such treasures to us.

We decided that we would keep Ben at home and out of the hospital. We wanted his last days to be peaceful and at home. We chose not to do a tracheostomy tube with ventilator because we knew that given the progression of the disease for Ben, SMA would quickly take all of Ben’s movement away and we did not want him to have to stay here, stuck in a body that could not move though his mind would be unaffected. As a parent, you will do anything for your child even if it is very, very hard for you. We were willing to be without Ben physically here so that he could be free.

Ben had several respiratory infections in the spring but made it through with just increasing his respiratory treatments and antibiotics. Due to some horribly scary episodes of him turning blue and unresponsive when semi-upright in the swing or being held, he had to use a sidelying position mostly and we carried him in a Moses basket to keep his position very stable.

On June 6, 2011, Ben developed a fever and very high heart rate, with his little tummy working so very hard to breathe. We thought he might be going to Heaven and we lay next to him snuggling, praying, crying softly. That night we started giving him medicines for pain and they worked to make him comfortable. Ben did not pass that night, and slowly improved somewhat throughout that next week. After that night, Ben’s work of breathing was more than before and every few days his heart rate would get high again and he would need a dose of medicine to make it go down. He returned to playing and smiling away, our sweet happy boy.

On June 22, Ben’s heart rate became very high again and his work of breathing was so much. That night his pulse oximeter alarm went off and from then on he needed oxygen and constant medicines for pain with increases in doses. It seemed that Ben’s body just could not go on working so hard anymore. In his last days on earth, Ben slept a lot and when awake he would mostly look upward, above our faces. We feel he was seeing angels and beginning to cross over to the next world.

On June 28, 2011, at 8:45 pm with the sunset, our beautiful Benjamin went to Heaven. I was once again able to hold him in my arms as we told him we loved him, it was okay, and to go to Heaven. We felt such relief for him, to not have to work so hard to breathe and to be able to move effortlessly. It was so peaceful and we had such a distinct sense that he was no longer physically in his body.  His long, fragile body which could not sustain him, which we so loved, was now just the shell from which he had moved on.

Since our Benjamin went to Heaven, we have found comfort in reflecting on his beautiful life. A lot of life can be lived in a short time. We may never on this earth know the power of this one precious life which God saw fit to bless us with. We find comfort in feeling him with us though not physically, in knowing that he sends us strength. After Ben was diagnosed, we read Walter Dudley Cavert’s “Dragonfly Story,” about the transformation to eternal life, which can be found online. We also read Heaven is for Real by Todd Burpo, and it was very comforting to us. We found healing in making photo albums with his pictures. We created a garden in his memory using blue flowers like his eyes and the sky, white like the clouds, red like his hair and with a red maple tree. We felt good decorating his spot at the cemetery with a red stone with a picture of his precious face on it, butterfly wind chimes, a little boy angel statue, and an angel light. When visiting the cemetery, the girls blow bubbles up to Heaven, and run to collect petals which have fallen to the ground. On his birthday and on the anniversary of the day he went to Heaven, we had a picnic there and sent up balloons.

We have continued to connect with other families who have lost a child. I have connected with other SMA moms I met when Ben was alive, and both Mike and I recently met with other grieving parents at the national Families of SMA conference which was held in Bloomington this year.

We have found healing in talking with a wonderful grief counselor together. We seek out things that bring us comfort, going out for coffee (me) or golf (Mike) with friends. We go on outings with the girls, knowing that Ben is with us too, and we so often see butterflies or dragonflies right by us, which we think of as signs from Ben of his transformation to eternal life. At Christmas time, I bought butterfly hair accessories for the girls and had stuffed them in my sock drawer. One day I stepped on something in our bedroom, and somehow a blue butterfly hair clip had made its way out of the package and onto the floor! At work during my home visits, I so often see butterflies. One day at each house I went to I saw butterflies, on the dishes of a little girl as we worked on feeding, on a light fixture at another house, on wall art at another.

I now look forward to that blessed day when I am born into eternal life, greeted by my precious Benjamin’s face. Until then he will send me strength and I will make him proud as I continue the rest of my journey here.

I challenge and encourage you…

Do you understand that though God can not stop all hard things, He can foresee all and interweave everything into His Divine plan to make good come of the hard stuff? He walks right along with you through anything. He truly gives new strength, each step of the way.

Do you live your life knowing that this world truly is temporary? I have witnessed it with my own eyes. Heaven is the ultimate goal. There my Ben is now strong and healthy, without struggle, in a beautiful eternal life and we can one day join him.

Do you make each day an expression of love to your children? Do you strive to brighten the day for others, even those you don’t know well? Do you spend your time on what is truly important?

He gives power to those who are tired and worn out; He offers strength to the weak. Even youths will become exhausted, and young men will give up. But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.  Isaiah 40:29-31

Nicole

For more information on Spinal Muscular Atrophy visit: Ben’s Caring Bridge Site and  Families of Spinal Muscular Atrophy.

 

It is my honor to introduce you to two living miracles, my sister Tiffany and my niece Raegan. Tiffany and Raegan are thriving against all odds.

My sister has given permission to share this story, and my parents have given their blessing as well. If you start reading this post, I suggest reading to the end to ensure you hear the story in its entirety, but warn you it is much longer than any blog post I ever intend to write! Here, I attempt to reduce a six-year story, (originally documented by me in a raw,  unedited, 200-page single-spaced document) into a readable blog post. When I first started writing this post, I spent hours crafting sentences to summarize ugly details of the first half of the story. While referring back to my journal and writing about the events of December 2007, I couldn’t endure the raw pain, couldn’t relive the unbelievable details of that month, couldn’t believe what I was reading in my journal actually happened, couldn’t bear to lay out for the entire world the worst moments of our lives. I just couldn’t bring myself to put it all out there. I am confident I have been called to share the story, but for now I must omit details and summarize the events of those six years as simply and with as much heart as possible. It is my desire that you will see this is ultimately a miraculous story of triumph over extreme pain and suffering.

It is difficult to know how to begin to tell the story that forever changed my life. The events that occurred with my sister over the course of six years impacted my family in ways I never, ever want to experience again. To retell the story means to open my heart, make myself vulnerable, bring to the surface feelings of desperation and helplessness, to put myself, my family, and my sister at risk for criticism and judgment. However, it is impossible to deny that God performed miracles in my sister’s life, so I feel compelled to tell everyone the story no matter how much it hurts to recall the details, no matter how much I want to hide it away and never talk or think about it ever again. I share the raw and real details of these worst of life’s trials in an effort to help you realize that God is still in the business of performing miracles, and that joy and healing are available to everyone regardless of their particular set of circumstances.

Let me step back and tell you a little about my sister before the chaos and destruction began. Tiffany…daughter of public school teachers, my younger sister, sister to our “baby” brother, blonde, beautiful, part of the popular crowd in high school, participated in band and choir, worked at a renowned resort where she earned large tips waiting tables, graduated from high school with honors, given a large scholarship from Minnesota Broadcasting Association, graduated from college with a bachelor’s degree in communications, and held professional jobs the first two years after graduating from college.

And then it all came crashing down…the snares of addiction and mental illness were about to trap my sister.

Herein lies my sister’s six-year journey from June 2004 through July 2010 and just a taste of its impact on me and my family, told in as few words as possible…

Quit her job in Minnesota, moved to Los Angeles to attend fashion school, dropped out within weeks, family unaware. Spent thousands of loan money. Experienced a crash due to drug use, let homeless people in her apartment who trashed it and robbed her, claimed she was being chased by men and was going to be killed.

Entire family flew to Los Angeles in attempt to coerce her to come home. Venice Beach, homeless, theatrics, people claiming to be Jesus Christ and the “real” Christopher Robin, momentary show for tourists but real life for us. No thrill of Hollywood here. Walking ahead, running, chasing for one week. Let it Be. Heart-wrenching and ultimately unsuccessful attempt to coerce. Left her in Los Angeles in very poor condition.

Crashed again due to drug use, family convinced her to fly home to Minnesota, drugs coming out of eyes, hospitalized until stable.

Back in Los Angeles, crashed in drug-induced psychosis, driven back to Minnesota by mom.

Seven person, seven hour intervention in Minnesota, difficult to tell if psychosis due to mental illness or drugs, emergency room, hospitalized for two weeks. Chemical dependency rehab, diagnosis of bipoloar disorder, began medications.

Suicide attempt via overdose, hospitalized, outpatient chemical rehabilitation, stabilized with medications.

Another suicide attempt via overdose, hospitalized in intensive care for three days and nearly died, seven additional weeks in the hospital, back on medication, frontal lobe damage, schizophrenia and bipolar disorder. Prayer requests abundant.

Ward of the state, monitored by nurse and social worker for months.

No longer ward of the state, suicidal, emergency room, discharged and diagnosed as having “insomnia” and told “get some therapy for her drug use.”

Back to Los Angeles in apartment, an extra in TV shows and movies, healthy and productive for three months.

Living in commune, psychotic, not reachable. Did not recognize our dad.  Hospitalized four days, back on medications, psychotic again just as dad was trying to bring her home, Christmas presents in the rain. On drugs, kicked out of commune, homeless in Los Angeles. Missing for two days then shows up at commune intoxicated, fight, police. Hospitalized again for five days, discharged. Bill collectors calling. Family in turmoil trying to figure out how to get her home, calls to say she wants to come home, mom flies to Los Angeles, mom drives her home to Minnesota.

Car repossessed. Suicidal, hospitalized three days.

Dysfunctional, confrontational, argumentative, moved in with boyfriend.

Brother in accident & hospitalized for a week, going downhill fast, given medication, scenarios that felt like episodes of the “Twilight Zone.”

Moved back home, talking non-stop for two hours, hospitalized, diagnosis changed to schizoaffective disorder, bipolar type.

Tells sister she is pregnant, tells mom she is pregnant, tells dad and brother she is pregnant, family devastated, appointments, ultrasound, fights, not sharing due date.

Visit to emergency room, discharged because “not suicidal” and “not needing immediate medical attention.”

Considering adoption, arguments, searching,15 weeks into the pregnancy.

Arrested, on 72-hour hold, mom visits social services offices, court hearing Christmas Eve morning, ultrasound indicated she is having a girl, ordered to lock-down facility, packing for long stay, parents fighting, family in upheaval. All during Christmas and New Years, just as two years prior.

Ultrasound revealed mass in baby’s lung, mass pushing other organs out of place, appointments with specialists made, dad with stress and rare lung disease moved to another state.

No longer considering adoption, confusion, arguments.

Appointments with perinatal specialists, soul damaging conversations, messed up relationships, court ordered and transferred to different facility in metro closer to hospitals and perinatal specialists.

Yelling, arguing, disrespect. More appointments with perinatal specialists, cardiologists, baby diagnosed with biggest Congenital Cystic Adenomatoid Malformation (CCAM) they’ve ever seen, baby’s lungs might not have room to form enough so baby can survive, baby might not have enough lung to ventilate or keep baby alive. Tears. Devastation.

Heads swimming, more ultrasounds, appointments with surgeons and perinatal specialists.

Special pass granted for pregnancy photo shoot arranged by me, one normal joy of pregnancy. Living with no regrets.

Agitated, leaving facility without permission, on lock-down.

Appointment with surgical director, team of doctors, review of baby’s case on weekly basis, surgical options reviewed, mass has remained stable in size.

Accusations, tears, insecurities, distrust.

Baby registry, preparing for the unknown, rejection.

Fighting, phone calls, tears, anger, perceived failure, dysfunction, longing for normalcy.

Ultrasound, stress test, perinantal specialist appointment, social worker, mass in baby’s lungs still stable.

Another appointment. yelling, more feelings of “Twilight Zone,” unhappiness.

Released from facility to visit my house. Chatter, disturbances, opening and closing of doors, intense words peaking, disrespect, accusations, back to the facility we go.

Phone call, has not slept for two nights, in poor condition, brought to emergency room, admitted to hospital, praying for peace and God’s will. Tears, exhaustion, frustration, regret, longings. Fear of failing. Asked us to consider adopting baby. Doing better. Discharged. No longer considering adoption.

More appointments. Preparing for birth in hospital where there is better equipment for delivery and baby with special medical needs. Discussion of c-sections, MRIs, heart-lung bypass machines. Told “there is nothing sure with this baby.”

Confusion. Compromise. Pastoral promises of a better future in eternity with God, suffering will seem like a blip in time compared with glory of eternity we will spend with Him.

More doctor appointments, mass same size, heart moving to left where it belongs.

Heated discussions. Accusations.

Baby shower in the facility. Expectations adjusted, this is real life at this moment. Kind women. Humbled.

Five appointments at the hospital. Feelings of neglect, mean words, more dysfunction. Laughing at inappropriate times, paranoid. All preparing for worst-case scenarios.

More doctor appointments. Baby’s mass appears to be reducing in size.

Mental health declining, inappropriate comments, laughing, humming, singing, talking, manipulating objects inappropriately. Deteriorating, wondering.

Praying and reciting Philippians…“Do not be anxious about anything…” Overwhelmed. Needing resolution.

Claiming the baby’s mass has disappeared. I heard reduction, not disappearance.

Staff in facility no longer able to provide care needed. Asked me to bring her to the hospital, emergency room. Agitated, crying, trying but unable to reason. Passage from Matthew about healing. Admitted to hospital. Agitated, asked me to leave.

Told she will be in hospital until baby’s birth. Transferred from one unit to another.

Frustrations, hurts, boundaries set.

Arguing disappearance of mass vs. reduction in size of mass. Persistence from both sides. Me feeling crazy, knowing I did not hear wrong. Lack of trust. Setting boundaries.

Preparing for baby, yet still a possibility the baby might not live.

Perspective, boundaries. Fatigue. Fights. Fear. Accusations, misunderstanding. Not feeling heard or understood by anyone; one, Kelly.

Still in hospital, baby overdue. Family fights, feelings of inadequacy.

Prayers. Lots of prayers.

Induction. Unexpectedly, me as birth partner. Mom on the side longing to be closer. Demands, panic, escalation. Two doctors, mental health assistant, three nurses, staff waiting for baby. Forcepts, vacuum. Raegan was born!

 

Three nurses to baby’s table, baby to special cares nursery with me, mom stayed as post delivery companion, blood analysis, x-ray, monitors, neonatologist. x-ray showed there was a good sized cloudy white mass on lung.

Another x-ray and CT scan for baby. Surgery for mass removal scheduled three days after birth.

Disrespect. Guards up. Boundaries need to be set. Nurses strike adds to dysregulation.

Private baptism. New mom discharged. Radiologist and surgeons met, baby’s mass bigger and more complicated than originally thought. Going to remove entire upper left lung lobe.

Baby transferred to NICU. Insecurities. Pre-op, baby in isolette. Surgery, upper left lung removed successfully!

Protection vs. paranoia.

Two living at hospital for days, one getting a needed break. Baby on oxygen and ventilator. Unfounded beliefs. Accusations of selfishness. Confusion.

Baby fully recovered. Baby discharged. Drove home, baby and new mom living with our mom. Dad still living out of state. Regrets. Anger. Marital discord. Deadlines created. Exhaustion.

Propping up and enabling vs. supporting. More discord. Crying.

Weekly home visits for baby by nurse. Very little sleep. Pacing. Confusion and clarification of identities and roles. Control. Psychiatrist appointment, new medication.

Visit to the house. “Take her.” Wild goose chase to AA meeting. Break time. Mom overworked and stressed, very alone, crying, red face. Drove away, helpless.

Baby shower discussions. Guilt, principle, confusion, longings vs. reality, too much to process. Grateful for others stepping in.

Accused as paparazzi. Argumentative, isolated from baby. Losing energy. Artificial deadline looming.

Break needed, unexpected request to come and take baby for a week or two. Urgency, prayers, phone calls to in-laws, phone calls to mom to verify need. Plan for next day. Baby sleeping peacefully. New mom with mom. Phone call, “major problems here.” In and out, lethargic sounding, pottery broken, crisis in the background. Offer to come now for baby. Baby still sleeping peacefully. Calm after the storm. More phone calls. Verify plan for next day. Husband makes trip for baby. Baby at our house for one week. Contact nurse to communicate temporary transfer of care at new mom’s request. Many calls from new mom to check on baby.

Series of last minute unfortunate events leads new mom missing baby shower. The show must go on. Drive baby to shower. I’m not mom. Old friends. Gratitude. Grace. Forever a memory.

Blankets and onesies prepared for arrival back home. Missing baby. Baby transfer. Met half way. Wandering, wondering. Baby back home in mom’s arms.

Ongoing discord. “God, I lift this to you.”

Visit. Things are good. Haven’t seen her like that for six years…

You might be asking, so that’s it? That’s the end of the story? Yes and no. That is the end of my sister’s six-year saga of trauma that forever changed the lives of every individual in our family.

I choose to view this story as one in which humans were brought to their very end, not once, but on multiple occasions. As humans, we had done all we could do, tried as hard as we could try, worked as hard as we could work, tapped all the resources we could tap. It was during the moments that we were at our very end, that the only hope, the only option that was left, was to pray and leave it in God’s hands. God saved my sister’s life and brought her restoration, not once, but on multiple occasions. This is truly a miracle. Not only did God save my sister’s life, but he also saved the life of my little niece Raegan. Humans, very educated ones, told us repeatedly over the course of months that little Raegan may not survive. Humans were preparing for the worst (possible death), while God knew all along that Raegan was going to be here on earth to live a great, divinely inspired life of her own, but also to bring my sister real hope, love, a reason to live, and promise for a better future for our family.

This month marks two years of my sister’s health! Tiffany has been virtually drug and alcohol free for two years, and with the help of a good psychiatrist, has found a medication that is working very well to control her schizoaffective disorder, bipolar type. Tiffany and Raegan live in Minnesota in the same city as my dad and mom who provide her and Raegan with a strong support system and love. Tiffany and Raegan have their own apartment, and they spend a chunk of every day at my parents’ home. Life is certainly not perfect, although is it for any of us? Raegan has a clean bill of health and just celebrated her second birthday. Raegan’s dad, paternal grandfather, uncle, aunt, cousins & great aunt love Raegan and are a part of her life as well. My parents (married 39 years this summer), although torn apart and very close to the end of the road through this ordeal, are now back together in Minnesota and have been navigating a path back to marital health. I am so proud that they managed to walk through this trauma, and wish them a lifelong marriage that they so deserve. I have been blessed with the sister I missed those six years, a beautiful niece who has brought joy to our lives, and the freedom to do what I needed to do to enhance my own well being, including pregnancy and birth of our third child and following my dreams to write.

I want to take a moment to acknowledge that I believe with all of my heart that my sister is living for a reason. I believe she is meant to do something awesome with her life. Maybe it is as simple as being an example of a miracle for those who doubted, maybe it is as simple as being a great mom to Raegan. Perhaps she can use her passions to start a tie-dye business, or maybe God wants her to volunteer at Teen Challenge and become a mentor. Could it be possible that God wants her to tell her story to youth and families, to share hope with people who struggle with mental illness and addiction? Maybe God wants her to go back to the streets of Venice Beach and reach out to those in need. I do not know what it is, but God knows.

Finally, although Tiffany is not currently dating anyone, I want to say to any of her future suitors…do not be overly afraid of my sister’s story. Yes, it might be scary to hear what has transpired in her past, but you have the opportunity to date a real, live miracle. God thinks Tiffany is special. God thinks she is worthy. God thinks her life is precious. And I hope you think she is precious too. I hope you love her and care for her from the depths of your heart, that you see Tiffany for who she is and not what she has experienced, or what labels she has been given by humans. God has labeled her as special, precious child. Love her, care for her, cherish her, empower her to grow and use her life, lift her up, treat her with respect and dignity, and do not be afraid. You have the opportunity to fall in love with one of God’s miracles.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Amy

I can honestly say that I am feeling good about myself right now. I love my family and have so many wonderful friends. We are now working on my anxiety and independence. I’m working on making a life not out of worry. Working on staying positive. I learn more about myself every day. I always jeopardize good feelings by thinking of something negative. Why do I do that? Seeing myself as beautiful. I’m beautiful and I have reasons to live. I need to tell myself that more often. Life can be good. I have reasons to live. I am loved. My heart is big, and I’m a friendly person. I am more than just a face. That is what this message is all about, and it feels good.

I told my psychiatrist how I wish that my mental illness would just go away. It’s the constant conversations that stop in only at times. I can’t fall back, ever! I have to stick with a routine and be the person people know I can be. It’s tough at times, but I must stay strong. DO NOT FALL! For years, I was trying so hard to prove that I was successful. I did not want to give up on my lifestyle. I had to give up that past lifestyle to begin to be the true person that I was meant to be. I am happy now without the drugs and numerous relationships. My new life has been a time of self discovery. I know that the right opportunities will come around if I stay strong and true to myself.

The reasons to live are so powerful and real. So good! Life is wonderful. There are so many beautiful people in this world. We should enjoy what we have. I feel that the only true feelings come when there is a love for what you’re doing. That love may come and go, but you have to cherish it while it’s there. To never give up on what’s there. We have to enjoy each moment. I used to just live. Now I am living for a purpose.

Tiffany

UPDATES AND ADDITIONAL POSTS ABOUT MY SISTER ON THIS BLOG:

Because We’re All Homeless Without a Savior {With Slideshow}

When He Wakes You and Says Write. Write!

How To Love Like Jesus Every Day After Christmas

When You’re a Single Mom Who’s Living With Mental Illness