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Rock Your Socks

Today is March 21st. It’s a special day. Not only is this the day after my oldest son’s birthday, his actual due date, but it is World Down Syndrome Awareness Day. On this day many people blessed to know a person with Down Syndrome will rock their funky socks in hopes that one person will mention them and ask why creating the opportunity to educate them on the beauty we have been blessed with.

I have to be straightforward. There was a time not too long ago that I knew nothing about Down Syndrome. If you are like I was then today is for you. My world was rocked on August 6, 2013 when my beautiful daughter Audrey was born. It was clear that my ignorance would soon become a thing of the past. You see, Audrey rocked that one little extra chromosome, the one that that meant she was a person with Down Syndrome. 

My biggest fear was if people of the world would accept her for the beautiful creation of God she was. I began to research. Do you know what I found? It’s pretty simple. Audrey was born with an extra chromosome. There are no set “rules” as to how having an extra chromosome can affect a person. Just as there are no set rules for you or I. It could mean that Audrey would have a bit harder time reaching milestones. Learning may take a little more work. Heck… it takes me work, too. 

Soon, I was able to put all of my fears aside, all but one. That nagging about how others would accept her. Now, Audrey was born with some medical challenges completely unrelated to that extra chromosome. These caused her to spend many days hospitalized. Through this time our family built a Facebook page to keep everyone updated on her health. It didn’t take long for over 13,000 people to follow her journey, to pray for her, to love her , and to accept her. My fears related to Down Syndrome melted away. Our family met other beautiful people rocking that chromosome. 

On Wednesday, February 18, 2015 Audrey passed away due to complications of her medical challenges. Today, I rock my funky socks for all the people rocking that chromosome who have entered my life, but mostly for my daughter. I could have missed out on one of the most amazing blessings in my life. I thank God I did not. 

Sweet Girl, Mama loves you. Mama misses you. Mama is wearing those same socks that once covered my feet next to your hospital bed, only today my toes poke through the ends. I’ll never throw them out. Eventually, I may sew the holes shut. Then again, maybe I won’t. One thing is certain. I look back on that silly ignorance and fear I once contained and shake my head. You taught me a love deeper than most will ever know. Thank you, Audrey. 


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It’s All Temporary

The air is frigid. Snow is covering the ground, some white, some tarnished by footprints and dirt. Flowers and plants lie dormant beneath the cold snow. The trees are bare and appear lifeless without the lush green leaves that typically dance in the gentle wind. Most days, clouds cover the sky like a blanket hiding the shining sun that so many look forward to.

It’s gloomy this time of year. Often times, this gloomy weather seeps into our moods. We wake up somber wishing we could stay in the warmth of our beds. Blessings seem to be gone along with the colorful outside life we long for. A warm drink and flickering fire temporarily allow a smile to form. Time with family during holiday celebrations cause the gloominess to subside for a moment. Joy sneaks in with the pitter patter of children’s feet descending the stairs to see the presents beneath the Christmas tree. For many, a promise of new beginnings creates an excitement as the new year sneaks in.

Now days, I find myself dreading the new year more and more. As it nears, I fall into the depths of reliving the downfall of my daughter’s health. On January 1, 2015, she was rushed to the children’s hospital with signs of illness and respiratory distress. Doctors accessed her condition and began to treat her. Her situation improved temporarily and then plummeted. On this day two years ago, I sat in a nearby conference room as Audrey was removed from one form of life support and placed on another. It was the last resort to allow her body a chance at healing. She coded. Doctors worked diligently to bring her heartbeat back. They were successful, but could not prevent the damage of a stroke, or others that were unseen.

My husband and I rushed to her side as soon as we were allowed, but stopped in our tracks with the vision of so many machines working to provide her with life. She lay on the bed medically paralyzed, awake beneath the mixture of medicines. I knew she was there hanging on to life beneath the gloominess in my view, much like the plants outside.

I clung to a hope that spring would arrive for her, and she would awaken with a refreshed life. I looked for those small blessings to get me through the long winter of her illness. A flutter of her eyes would stir excitement in me. My mood would get better with any movement of her left side. Occasionally, her body would grow used to the medicine causing her to sleep. Her eyes would open and search for me. When they locked on mine I could sense her fear and hope for Mommy to help. This image still seeps into my thoughts causing my chest to tighten and tears to sneak down my face.

I fought for her alongside the medical team. Some days I fought the medical team to fight harder. The end of that fight came on February 18, 2015. I had prayed for God to provide me with answers, to make it clear if the time came to let her go from this earth and into his arms. And he did. The damage to her body was far too severe for her to sustain life without her machines. Even with the support of machines, her body was failing. She was uncomfortable. I sensed she felt pain.

My heart was broken in a way I had never felt before. Still, I looked for the blessings. I received one final night with my baby girl. I held her for the first time in over a month. I stroked her face, and pushed back her hair. Her eyes opened. I no longer saw fear or hope for Mommy’s help. Her hope lay in someone else now. My hope did, too.

When the time came for final goodbyes I looked around to see our closest family and friends packed into the room where I spent my final night next to my daughter. Each person spent time with her, stroking her hand, telling her their final goodbyes. We read her stories. I read “You Are My I Love You” to her for the millionth and last time. Her brothers lay their heads next to hers. I’m not sure they completely understood what was happening. They just knew they had to say goodbye. Our closest friends and pastor stood by as I told my daughter do not be afraid. Jesus would take her by the hand and guide her to a beautiful place called Heaven. She would feel no pain. My prayer of her healing would be answered, not in the way I had hoped, but in a way that would last forever. I asked her to meet me by the lilacs and believe that she will. When sadness creeps in, which it does often, I imagine her with a smile on her face and bouquet of lilacs in hand. She is reaching to me as I run to her.

Our favorite music therapist had been sitting by playing his guitar as we spent these final moments with Audrey. With a nod of my head he began playing “Here Comes the Sun” by the Beatles. Here comes the sun. Here comes the Son. The Son would guide her home. He would care for her in a way that I could not.

I miss her in a way that so many could never understand. This time of year is so difficult for me. Visions of that last few months play over and over in my mind. I cry a lot. I feel so broken, but still look for the blessings even as temporary as they are. The brokenness is temporary, as well. Everything this side of Heaven is. My hope is in my Savior. One day, He will take my hand and guide me to that beautiful place where the lilacs are always in bloom. It’s the place where I will find her waiting.

 

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‘Twas the night before Christmas: A grieving parent’s perspective 

My poem was published on the mighty. 
https://themighty.com/2016/12/grieving-mothers-christmas-poem/

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Happy Birthday Twiggins

My Dear Audrey,     Today is your birthday. As we celebrate your twin brother turning three years old you will forever remain 18 months. Mommy’s heart hurts so much sweet girl. I see him growing and learning. Your friends are, too. I wonder what what you would look like today. How long would your hair be? Would It be in piggy tails? Your brother and friends are walking, dancing, and singing. I watch them play and see them learning new things. I am always so excited and happy to see what they are learning. Yet sometimes I am sad and jealous, too. I wish that you were still here. I wish that I could see you doing these things. 

     Sweet Cricket, Mommy knows you have received the best gift possible. Heaven. For that I am eternally grateful. Your life has touched more than any of us here on earth can comprehend and it continues to do so. Your pure love is a testament to how Jesus lived. It is a goal for me to work toward. I am humbled and awed by the power of your story. And though the earthly side of it was short, it continues. Your story lives on and is spreading. Many have been and will continue to be helped by the legacy that is Audrey Ann (Cricket) Wiggins. You are forever in my heart baby girl. I am blessed that you were mine. 

     Today, I hope you celebrate. I hope you sing. I hope you dance in the field of flowers. I hope you smell the lilacs. I hope you walk… Heck… Run baby girl. I hope you enjoy your birthday with the Angels. Mostly, I hope you feel loved. You are so very loved. Eat cake and ice cream. Blow out the candles. Make a wish. Celebrate baby girl just as we all will be celebrating you and Asher. 
Love, 

Mommy

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Not Mine…

“No, Asher. That’s my dog. I didn’t say you could have it.” 

My nine year old son, Bailey tends to be pretty calm with his two year old brother. I listened on from the next room as he attempted to convince his little brother of this fact. It was true. While this robotic toy dog was super cool with it’s barking and flips, it was not his. But he wanted it. He wanted it so badly that tears fell and screaming began. Time for Mommy to intervene. 

“This does not belong to you, Asher. You need to give it back,” I instructed. Helping a two year old to see reason is rarely easy. It’s so hard to put something down when you want it so much. As his mom, I know it’s the right thing and in his best interest for me to allow the pain he is feeling now so we can avoid bigger issues later. 

I suppose that is how my therapist felt as she held a basket of bracelets in front of me and said to take several. They are simple bracelets that say not mine. She asked me to wear one as a reminder. This reminder is not of when physical belongings are not mine, though it could be. These bracelets are to remind me when a feeling or reaction does not belong to me. 

  
I have struggled with ownership of feelings often in my life. Two big times come to mind. There was a time when having children did not come easy to my husband and I. It was difficult to hear many of the statements made by others. My Facebook feed seemed overtaken with pictures of children. I wanted them. They were not mine. And then the status update that every mom makes. I just want a day of peace. Or child for sale or free! It’s a pretty hard thing to hear, a parent (which you dream of being) wishing to be rid of his/her child for a moment of peace. We all know this is just an outcry of frustration. The childless person who dreams to be in this situation sits hurting, wishing it were her. NOT MINE…

This statement hits hard still today, not because I am childless but a grieving parent. I wish with all that I am for one more smile, hug, kiss. I wish for one more sleepless night of feeding pumps and alarms, blowouts like most have never seen, ER trips, and missed meals. I wish for one more second of her here with me. Just one. NOT MINE…

In a way I am similar to my two year old wishing for “mine.” Yet it is not to be. I cannot change that it was difficult for me to have children. I cannot change that my daughter was born sick and died. But I can learn that when something is not mine to give it back. Put it down. 

You see, once I did become a parent I found myself making those same comments that hurt me before. I did not intend to hurt anyone. I was expressing my feelings for that moment in my life, just the same as those who inadvertently caused me pain. The choice is mine. I can let hurt and darkness consume me, or remind myself it is NOT MINE. This person’s journey is NOT MINE. His or her emotions are NOT MINE.  They do not belong to me and I cannot control them. What I can control is me, my emotions, my reactions. The pain of losing my daughter will always be present. But I am learning that the sting hurts a bit less when I am able to put down the hurt attached to what is NOT MINE. 

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I should be sleeping, but cannot. My mind is wandering through a journey filled with fear and panic. I’ve been on this journey for a while, but the anxiety grew stronger once Christmas came. You see, as the rest of the world prepares to ring in the New Year, I am overcome with grief.  I am reminded that last New Year’s Eve was the last celebration spent with my sweet daughter and we were not blessed with many celebrations before that. 

While the rest of the world prepares a new year’s resolution, I am preparing to relive the moment that my daughter was admitted to the hospital, her second (okay maybe first home) for the final time. I will spend nearly two months reminded of the fight she gave and the battle she lost just after Valentine’s Day 2015. I will relive every decision, every moment, every alarm.

As everyone else raises a glass to toast in what will come, I am reminded of what will not. There will be no shopping trips with my baby. We will not buy prom dresses. We will not go to concerts. I will never see her twirl in a dress or hear her belt out her favorite tune. This mama will not teach her daughter how to curl her hair or put on make up. I do not get to see her stand on her daddy’s feet and smile while he dances with her. I no longer get to see her brothers stand firm to protect her. 

My heart aches at all I will miss out on. Still I press forward walking this journey through grief knowing that even in the deepest sorrow joy can be found. It’s hard to admit sometimes. Joy and blessings have come out of the most heart wrenching experience in my life. I have met friends that would never have crossed my path had my daughter not passed away. I have learned to breathe in the life of my sons, to cherish each moment. Yet sorrow remains. As I watched my boys excitedly open gifts this Christmas I was reminded of my daughter’s absence. 

I will not be declaring a new year’s resolution for 2016, but instead will be setting goals. The first one will be to rely on friend’s and family to help me through the next two months. I know that I cannot walk this part of my grief journey alone. 

So as you you prepare to toast in the new year, please also prepare to show a grieving person some love. Walk with them through their journey. Reach out and pick them up off the floor.  

     
 

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When Broken Meets Beauty

This has always been one of my favorite times of year. It’s as though a special magic fills the air. Christmas carols seem to come from every direction. People connect with family they may not see often. Joy is all around. Well, it used to be. 

This year is different for me. I now notice a population of people hurting similarly to myself. Mothers with no child. Tears sting the corners of their eyes while they push carts through stores visualizing the gifts they wanted to purchase but no longer have a recipient for the gift. There is an empty seat around the Christmas tree this year. 

That is the reality so many face. And then others, like me must trudge on purchasing gifts for the ones who remain while tears flow freely as they walk passed the little reminders of the one who is gone. Moments of true joy may come while others are forced to exude a false joy so as not to be pulled under.

This is where I am this year. My sweet daughter, my only little girl passed from this earth in February of 2015. This week marks the one year anniversary of our final good week with our baby girl. It is tearing me to shreds. Our Christmas tree went up late this year, a little slower than normal and in stages. I didn’t really want to put it up. My mother didn’t want to put hers up either. But we did. We pushed on for the children that remain, for Audrey’s siblings and cousins. 

A genuine smile and moment of joy crossed my face while I watched my two sons dancing to Christmas carols as they placed ornaments on the tree. And then the sting of tears came with a vision of my baby girl the prior year pulling her hands back from the prickly branches. 

This is where broken and beauty meet. These moments are often uncomfortable for those who have yet to experience them. It is a place of joy and sorrow that comes when the past creeps into the present. Many would say to push the past away, but I cannot. You see, that is the only place I can see my sweet girl now, in my memories. Though these memories bring a sorrow connected to my longing for her they also bring a great joy that she was here. She was mine. She existed.

Christmas in itself is like one of these moments. The brokenness of this world collides with the beauty of a promise brought to us by the birth of a child and the sacrifice that would come. And wether you believe in the truth of Jesus Christ or not, this Christmas story is what tells me I will see my sweet baby girl again, not just in pictures or dreams but face to face. This is the gift I will treasure and cling to as I sit in my pajamas drinking hot cocoa, watching Audrey’s brothers open the presents under the tree.  This is the beauty I would hold onto as the tears come from my broken heart when I see her stocking still hanging untouched. It is in this place of broken beauty that I know I will make it through. I will be okay. I suppose it is a reminder of my little Cricket. The world may have looked at her like she was broken, but I was lucky enough to see her true beauty.

   
   

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Being Brave for a Miracle: Bravery Bucket List Itsm 1

Tonight I will check off the first item on my Bravery Bucket list in honor of Audrey at the opening night of the Miracle Worker. I will be playing the part of Kate Keller, mother to Hellen. The moment pictured here is the hardest for me. My line is, “every day she slips further away. And I don’t know how to call her back.” That line resonates with me losing Audrey. I fought hard for her to be healthy and stay here with me. That was not meant to be our story. It’s hard to come to terms with with a life story that does not match your dream. But even in this darkness, I see light. I see beauty. I saw it in my daughter. I see it in the many children we have met because of her journey.
As the curtains open tonight, I will be setting aside many fears. Good bye stage fright, fear of judgement and criticism, at least for a short time as I take on the character of Kate Keller. I will be brave as I show the bullock creek area the emotional difficulty of mothering a child society deems as “special” or possibly even a “nuisance.” My prayer is that the blessings and love received will outshine all of those difficulties. My goal is to boldly show people that every single life has meaning and is worth any difficulty experienced. My hope is that even one person realizes that we can live in fear of our dreams not coming true or embrace the beauty that God has blessed us with. What a beautiful journey we are blessed to walk when that happens.  

 

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Be brave. Be strong. Don’t give up.

Every test. Every surgery. Every time. I would lean in to kiss her and whisper in her ear, “show em what you’re made of, Baby Girl.” There were so many times, so many opportunities to tell Audrey she was brave and strong. So many times I had to remind myself to be as brave and strong as my beautiful daughter. “Don’t give up, Mama,” her nurse would say. “She’s tough.” And she was every time. 

   
 Her strength and resilience amazed me. Time after time she was wheeled away with a smile on her face. She knew the routine. She knew the medical team more than most of her blood relation. She knew what was coming and faced it head on like a champion. Be brave. Be strong. Do not give up.

   
 
One hundred seventy five. That was the number of days my sweet “Cricket” lived in the NICU having countless tests and surgeries. I was terrified. I tried to wear a brave face for her siblings and other family. But the mask of bravery melted away every time my eyes locked with another NICU parent who felt the same fear. It shriveled up whenever another obstacle arrived. I wore the fear on my face when the doctors entered quietly contemplating how to deliver bad news. It was impossible to hide the fear when they wheeled my baby girl away for open heart surgery. I was so frightened that I forgot Audrey’s twin in the hospital room. Thank God for good nurses who do not forget! Be brave. Be strong. Do not give up.

   
 
The next year would be spent in and out of the hospital. More tests. More surgeries. More questions. Why my daughter? I could not shake this one. We made the best of her journey. Her toenails were painted. She wore funky clothes that Dr. Pandya would insist were most “inappropriate” for a little girl. Mommy attempted to tame her hair, which usually stood up in a Mohawk. This was her normal. This was my new normal. But this was not my plan. Be brave. Be strong. Do not give up.

  

I rarely left Audrey’s side learning to advocate and push for her needs. She was medically complicated and fragile. One little error could set her back, cost her time, cost her health. I shoved my weak stomach aside and learned to care for her needs. I became not only her mom, but her nurse, Doctor, paramedic and pharmacist. I felt guilt for being absent from my boys’ lives. I felt overwhelmed. I felt tired. Be brave. Be strong. Do not give up.

  
On January 1, 2015 my husband and I drove Audrey to the children’s hospital with symptoms that could either be related to a birth defect or respiratory distress. Test results appeared to show a correlation to her birth defect and another surgery was scheduled. By this time she had endured more than 80 surgeries. It was like an old hat. Be brave. Be strong. Do not give up.

Test results were wrong. It happens. Audrey was in respiratory distress and continuing to decline. She was placed on life support. Then more aggressive life support. Then the most aggressive form of life support, ECMO. She head a heart attack and a stroke while being put on the support that would work for her heart and lungs. But they got her back. Be strong. Be brave. Do not give up. 

So many questions. Would she regain her left side? Would she need to have a trach? Would she live? Be brave. Be strong. Don’t give up.

My little girl was on ECMO for one month before the world crashed in around me. Her surgeon took us to a conference room and told us that everything was done that they could do medically. Now it was up to Audrey. She would go through a trial off the major life support to see if she could sustain life on a ventilator. I crawled up into her hospital bed put my arm around her and whispered in her ear again. Be brave. Be strong. Do not give up.

  She began to struggle more and more as her ECMO support was reduced. I got on my knees and pleaded with her, “fight, Audrey. Please. Please fight.” But her little body was all out of fight. Be brave. Be strong. Do not give up. 

   
 We knew it was time. We had to give her permission to go. After family and friends took time to be with Audrey we read her stories, played music, prayed and talked to her. I leaned in one last time and whispered, “It is time Baby Girl. Be brave. Jesus will be holding you as you go. Be strong. You will meet our family that has gone before. There will be no more surgeries. No more tests. You have won His reward. Don’t give up. Find the field of lilacs. Twirl in your dress. Dance. Sing. Wait for Mama there. I will meet you there when it is my time. And until then I will try to be brave, be strong, not give up. I love you. I love you. I love you…… Over and over until her heart stopped beating. I picture her dancing and singing. Picking bouquets of lilacs. Playing with the other angel babies and showing each other how brave and loving their mamas are. How brave and beautiful their siblings are. How brave and strong their Daddies are. Audrey Ann left this earth on February 18, 2015. She leaves a legacy of love and bravery. It has been so difficult since she has left. I have days filled with sorrow, anger, guilt and questions. But I also have days filled with joy, friendship, family and love. I’m learning to be brave, strong and not to give up.

I started a bravery bucket list in honor of my sweet Cricket. You see, I may never know why her life was so short or filled with medical challenges. But I can honor her by being as brave as she was, as strong as she was and never giving up. I am in the process of tackling my first act of bravery by acting in a community theater production of The Miracle Worker. Be brave. Be strong. Do not give up. 

  I have always dreamed of acting in some capacity but feared criticism. A friend knowing this dream contacted me about auditions. I connected very quickly to the role of Kate, mother of Hellen Keller. You see, she faced many of the same fears as I did regarding her daughter’s medical conditions. I knew I could play this role. I had lived it. I want others to see that even through the fears, the trials, the life considered to be so far from normal, you can and will find love. Audrey taught me to love without abandon. She taught me that it is worth it. Mothering a medically fragile child was worth it. She will always have been worth it. Worth every tear, fear, heartbreaking hole I now have in my soul. Audrey Ann Wiggins was worth it. And if you are facing fear of uncertainty in your life situation let me whisper these words to you my friend…

Be brave. Be strong. Don’t give up. For God has also whispered these words to you. 

Psalm 31:24 MSG                                                24 Be brave. Be strong. Don’t give up. Expect God to get here soon.

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Through the Eyes of a Child

imageI held one half of my “Twiggins” in my arms the other in my heart as the cashier scanned and bagged our groceries. A little boy sitting on a bench near our lane caught my older son’s attention. Bailey walked over to see what video game he was playing on the Nintendo DS. I kept an eye on him as the cashier continued to scan. What I witnessed was a simply beautiful conversation.

“Oh, I have that game!” Bailey took a step closer.

The little boy never looked up from his game as he said, “I have a sister. She’s seven. I’m five.”

I held my breath and firmly planted my feet on the ground. My instinct was to go collect my son and protect him from any hurt this conversation may cause. But I did not. Bailey said, “I had a sister.”

Neither boy looked up from the gaming system. The little boy asked, “where is she? Did she die?”

By this point I had silent tears threatening to spill over. I started to take a step forward, but stopped as he replied, “yes. She was one.”

Neither boy spoke another word. The other mom finished paying and collected her child from the bench. The once silent tears spilled over with some newly added sniffles.

It was such a simple, beautiful conversation. A topic that becomes awkward and socially feared for most adults came out so easily for these two children. I’m so thankful that I did not interfere with this moment. It was a gift to see how kids can handle raw life. I wish more adults could follow this example. I wish life could be so simple.

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