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Fear will rob you if you let it

Many of my recent posts have been about the raw heart wrenching final moments of my daughter’s life. Today, I want to share a little about Audrey’s first days and the gratitude I have for our complete medical team. You see, this morning I learned of Baby Doe and my heart broke, not just for this sweet child, but also the misguided parents. You can read the story here:

http://www.downsyndromeprenataltesting.com/today-baby-doe-died/
I’m going to step all the way back to my pregnancy with Audrey and her twin, Asher. We knew two babies were in my womb from the moment of conception. Josh loves to tell people that he didn’t touch me. The truth is, he held my hand while an incredibly compassionate doctor we sought out medically placed our “Twiggins” inside of me. It had been a long road filled with emotional and physical pains , as well as fear. What began as fear that I would not become pregnant changed into fear that I would not stay pregnant. I began to see a high risk OB who monitored my pregnancy and handled my nervousness well. He was the person who first informed us of a potential issue. Our baby B was not practice swallowing. Doesn’t seem like too big of a deal, right? But the fear began to grow rapidly, especially after consulting Dr. Google (not recommended). Our actual physician displayed much more knowledge and compassion. We were transferred to a specialist and eventually a children’s hospital where baby B, known as Audrey by this point, received a prenatal diagnosis of esophageal atresia/tracheoesophageal fistula. This was confirmed at birth followed by confirmation of several congenital heart defects and Down Syndrome. Fear.

Our daughter would require several life saving surgeries. Fear. We knew nothing about Down Syndrome. Fear. Life as we knew it was changing. Fear. Fear…. FEAR! This journey was full of that four letter F word. We all have a choice when faced with fear, allow it to motivate or debilitate us. I started this journey debilitated to the point of terrified jitters and emotional break downs resulting in a concerned caution for all people around. So many people reached out in support and attempt to ease my fears. My biggest fear was my daughter’s life ending. One nurse sat with me in the dark hospital room with her arm around my shoulders as my body trembled and I shed tears over Audrey being diagnosed with Down Sundrome. She handed me tissues and resources. Another reminded me that Audrey was still a baby and taught me how to arrange the many wires in order to change her diaper.  A doctor shocked me into the reality that my daughter was blessed to be alive. Slowly, the medical staff and friends pulled me from the depths of despair to a level more manageable. Yet, fear continued to lurk in my thoughts. 

I started to notice other NICU patient rooms and the lack of family or visitors. Until then, it had not occurred to me that some parents may choose to walk away from this life, this child that God had chose to bless them with. I am not writing this to say they were right or wrong. Only they can decide that. I simply want to say that it is an option unlike the recommendation Baby Doe’s parents received. If you read the article you will see that my daughter and Baby Doe shared similar diagnosis. I am so thankful that we had supportive family, friends and a medical team who helped to motivate us through the fear of unknown, who helped us show love and compassion to our beautiful daughter, our blessing. I am thankful that a picture on the NICU wall of a beautiful little girl who just so happens to have Down Syndrome opened my eyes to the beautiful life she lives and the possibility for my little girl to live that type of beautiful life. I am thankful for those who have walked a similar path and shared the victories with us. Stripping away that fear allowed our family to embrace Audrey, to learn from her and to enjoy loving her fully. That has been a true gift. Her journey may have been challenging and short, but it was also filled with love and joy. It was worth it. Worth every sacrifice. Worth every tear shed then and now. Worth it all. She was worth it. And I am thankful that our medical team thought she was worth it, too. Fear could have robbed our family of a beautiful treasure. Thankfully it did not.

  

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Living Love

There I sat, finally in a place of complete love and acceptance of my daughter’s medical challenges. Her life would be different, but I was fully prepared and ready to set mine aside for hers. Our vacations would be less of tropical islands and more vent camps. I was finally ok with that plan. That is when God clearly asked for me to let her come back to Him. I had visions of when He asked Abraham to sacrifice his only son in Genesis Chapter 22. There was no fire or alter as in the biblical story. But our only daughter who we prayed so hard to come into our lives lay on the hospital bed connected to more machines than a private room could hold. We did not want to let her go. We prayed that God would be clear and show us His plan for her. And He did. As the medical team slowly turned the machines down her blood oxygen levels dropped. She could not even sustain them with a ventilator doing the work for her lungs. I pleaded with her to fight harder, but her little body was tired.

On folded knees, I leaned down to her ear and choked out the words. “It is time, Sweet Girl. Do not be afraid. Some of Heaven’s best will come to meet you. They’ll show you the way. I hear that it’s like a blink of the eye and then Mommy and Daddy will be there with you. Until then, I want you to find the most beautiful flower gardens. Find the lilacs. They are Mommy’s favorite. Dance and sing there, Audrey. Twirl in your dress. Let your pigtails swirl up and out. Mommy will find you there. I love you. I love you. I love you….”

Those were my last words to my precious baby girl before she passed from this earth. Just days before I had wrestled with God. Why would He ask for her back after all that we had endured, all that she had come through? Many say that we may never know that answer. Yet, my heart says differently. Her job was done. She lived love. So many of us, me included, struggle to live a life filled with love. Our hearts may grow bitter and hard when we feel less love than we desire from family and friends. Yet, God does not ask to have such man made love be our focus. He called us to follow Him. When we follow Him, we live love.

1 Corinthians 13:1-3
If I speak in the tongues of men or angels, but do not have love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have faith that can move mountains, but do not have love, I am nothing. If I give all I possessor the poor and give over my body to hardship that I may boast, but do not have love, I gain nothing.

Audrey had a fierce love for others and herself. She fought through over 80 surgeries for her life. She learned to sing and dance. Even when she cried through pain or discomfort a smile was sure to break through. She forgave and forgot quickly. I am learning through the example of an 18 month old baby girl to love in that way.

1 Corinthians 13:4-7
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

Let’s face it, to love is not always easy. But it is always worth it! I miss my baby girl more than words can express. I long to see her chubby hands feeling her Daddy’s five o’clock shadow, the tilt of her head as her hands fold beneath her chin and the love in her eyes as she studied her brothers. I wish to feel her arms around my neck and smell her scent again. These are now just memories until the day we reunite. As I wait for that day, I will smell the lilacs and know that she is dancing, singing, twirling and waiting for me there. I will strive to live love, just as she did.

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Dear Down Syndrome

Dear Down Syndrome,

You snuck into our lives quietly alongside of several scary diagnosis our baby girl received. We knew nothing about you except that surgery could not “fix” you. For this reason, we feared you the most. 

 

 We began to research what you would mean for our daughter’s life and became even more frightened. The research said many things would be difficult for her and she may not even achieve many milestones like walking and talking. We feared our daughter would not be loved or accepted. Down Syndrome, you caused us to grieve the child we had dreamed of having. She was meant to be perfect with brunette pigtails in a twirly dress dancing in a field of flowers. Her smile would be radiant and her laugh infectious. You, Down Syndrome stole that dream from us. 

We were angry for a little while, but not too long. Soon we learned to cherish things we could not have dreamed of that you brought as a gift. The first was her little feet and separated toes. Oh, how we loved to paint her little toe nails! The second was her low muscle tone in those early days of a long NICU stay and how it made her little body snuggle into the crook of our arms like a newborn for a little longer than her twin’s did. Third came her tolerance for pain. It sounds strange to say this one, but she needed it to endure all of the surgeries that came with the other diagnosis. 

Do you remember the radiant smile and infectious laugh we dreamed she would have? It was better than we had imagined. Pure love flowed from her in a way that made thousands of strangers fall in love with her. 

 

 Down Syndrome, soon you became our least feared diagnosis as our sweet girl battled illnesses and infections brought on by the others. We began to embrace you and saw a new dream for our child that was so similar to the first. Only now that dream was for her happiness not ours.   We learned that hitting a milestone late or not at all did not steal her joy. So, why should we allow it to steal ours? We watched as she smiled through the trials and loved through the pain. Soon, we learned to do the same. We discovered that happiness can be found in every moment, even the most painful ones. 

On February 18th, another of the diagnosis took our sweet girl home to Heaven. We miss her terribly. We miss everything about her including you, Down Syndrome. Thank you for the gifts we received through your presence in our daughter’s life.  

 You are no longer something that we fear and hope to help others embrace you as well.

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One Month

It has been one month and the pain is still fresh. I still miss your sweet smile, your infectious laugh, the way you rubbed Daddy’s cheek and put your cheek to mine. I miss buying you wild clothes and putting them on you, watching your twin teach you how to crawl, seeing your face light up when Daddy or Beba came home at night and watching the pure love you and Bailey share. I even miss the annoying beeps of machines, mixing and filling formula, taking care of your tender skin and washing your silky hair. I am getting used to this new feeling that will never leave. It is a longing for you. Missing you will never be easy, but it is slowly becoming my new normal. I still shed tears for you every day. I imagine I always will. I also imagine you dancing in Heaven’s fields of flowers. You no longer have a hospital mullet, tubes in your nose or belly or scars on your precious skin. I can’t wait to see you dancing there! But it is not my time, yet. Your brothers and Daddy still need me. Sweet Girl, I am getting excited to plant a flower garden for you here in our new yard. Maybe I will catch a glimpse of an angel dancing there from time to time. I love you, Audrey Ann.

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One week

It has been one week since you left. One week since I traced your beautiful face with the tips of my fingers. Since I brushed the few loose hairs back from your cheek. Since I laid my cheek next to yours and let my tears wash onto you. One week my love. One week since I held your hand and rubbed it in mine. Since I kissed your lips. Your forehead. Every part of you that Mommy could. Since I heard the “bum… Bum” of your heart beating through the stethoscope. Since I whispered, “I LOVE YOU” over and over until my whispers became a plea for you to hold onto those words and emotions as you moved on from this world. I still whisper them in my head and say them as I sob in the shower. I now hold your baby doll and white fur coat to my cheek and soak them with tears. I trace your face on the canvas portrait of you and pretend to brush back your hair. I hold your brothers’ hands now and listen to your daddy’s heartbeat when I lay my head on his chest at night. Somehow I know that a part of you lives on in each of them. I hear your song in Asher’s hum. I feel your love in Bailey’s heart. I see your strength in all of your Daddy. I see your eyes in Beba. You are still here, though you are not. One week already feels like a lifetime my Cricket. And though my heart is broken, I am blessed to call you my daughter. I know that you are dancing and singing now. And I know that when my day comes you will be waiting to meet me with a bouquet of lilacs and excitement to show me the most beautiful field of flowers. On that day we will dance together. We will sing and hug. We will kiss. I will trace your face and hold it in my hands as I whisper, “I LOVE YOU.”

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Chicken Shawarma

So far, the year 2015 has been quite stressful for my family. We started off with a trip to the emergency room first thing and have been in the hospital with Audrey every day of 2015. Her health has worsened to the point of being put on a life support called ECMO. A few of the doctors and I discussed how every person copes with stress differently. In fact, that discussion was had at several different points in my day. I must really look worn out! 😉 When I mentioned eating as my coping mechanism several of them piped in with “it’s chicken shawarma day!”

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Now, you cannot spend as much time in this hospital as Audrey and I without hearing about the legendary chicken shawarma. Historically, this infamous dish has been served on Fridays in the main cafeteria. Recently, you can find it on Tuesdays in the Get Away and Play Cafe as well. I know that the majority of Audrey’s main medical team look forward to these days purely for this little treat. So, how is it that I have never had the chicken shawarma experience? It may have something to do with the line that wraps out of the cafeteria. One would think that you should just grab something quick from the empty side of the cafeteria. Let me assure you that if a hospital cafeteria has one (I echo one) line this long and no lines elsewhere you should probably just get in line.

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I am positive that I chose to bypass this line on many occasions. However, today my support team (Audrey’s medical team) warned me that the line looks horrendous but moves quickly. When lunch time came I ventured downstairs to the main cafeteria, found the longest line and got in it. Two hospital employees stood just in front of me chatting. As we waited I became nervous that I may be in the wrong line. But they assured me this was where to get some chicken shawarma. One of them warned me to be prepared because they move quick with the orders. I felt my stomach start to tighten. How could I be prepared when I didn’t really know what “shawarma” was. I mean we’ve all seen chicken, but this was a new territory for me! My turn came to order and I loudly and firmly called out “chicken shawarma combo please!” I was pretty proud of myself until I realized there was more to that order. What? What was the man behind the counter asking me? I swear it was a foreign language! I turned to the ladies ahead of me in line and then back to the server. Eventually, I just pointed and said, “give me what she ordered!” Haha! I must have looked like such a mess, unable to make a simple decision. But seriously, I have had a lot on my mind lately with Audrey.

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Several of the medical staff had told me this dish had garlic. I decided to grab a brownie just in case lunch was a bust and I needed a chaser. Here is what a chicken shawarma lunch at the U looks like (plus a soda and dessert).

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And here is what was left….

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Any questions?

So if you find yourself at the University of Michigan Main or Mott hospital on chicken shawarma day, please just get in line! You will not be disappointed with the perfect balance of garlic, chicken and pita in this dish. Just be ready when it’s your turn!

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Dear Mom Across The Bay

Dear Mom Across The Bay,

I’m not sure how many days have gone by since I first saw you in the waiting room. Your red rimmed eyes confirmed that your child was just down the hall somewhere near my own in the PICU. I have been praying for your child and family since that first moment. My heart rejoiced with every smile that crossed your face for I know that means a victory occurred, no matter how small. And it sank with sadness and fear every time I saw yours sinking. We began to pass each other more frequently as both of our children became more sick and moved to the open bay. Your hair became a bit more tousled and eyes drooped from the lack of sleep. Yet my heart warmed to see the large number of family and friends that support you. Seeing you was like looking in the mirror. I still had not met you, but felt a bond that is hard to explain. We shared something that I wish no mother had to experience. It was not long before I realized who you were. I had heard about your family and how loved each of you are by so many staff and volunteers here. I think that is common when you have a child with chronic medical issues. My prayers became stronger. I wanted to hug you. I am sad that I did not.

This morning as I made my way to early morning rounds I noticed the waiting room was emptier. The sign for your family was no longer on the door of a conference room to provide a private space for your many supporters. And when I walked through the bay doors and saw your son’s area vacant I exhaled. I panicked. I knew. As a mother, I felt the pain that you must be feeling now. I want you to know I am sorry. I want you to know that you, your family and your son are loved by people who have never officially met you all. My family has prayed for yours and will continue to. My family is crying with yours today. Thoughts and prayers go out to you from the mom a few bay rooms away.

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Full of Peace and Thankfulness

Our hearts are filled with thankfulness and peace tonight for so many reasons. First and most important is that Audrey’s trip to the OR today was successful! Praise Him for that! Second for the thousands of people who stood in the gap, praying for our sweet baby girl. It is such an overwhelming and humbling experience to know and feel all of those prayers. Thank you for that. I’m imagining the “wrap up” music from the Hollywood award shows starting and know this could get long so I will quickly run through some things we appreciate through this process and ask that you stay tuned for the final one. It is special!
We are thankful for:
Surgeons who love our daughter and family beyond the OR. They paint toes to make Mommy’s heart happy and maybe their own as well. They think about Audrey continuously attempting to determine the best medical interventions to maximize her life opportunities. They talk with Mommy and Daddy late at night about test results, inability to sleep because of worry, local food recommendations and so much more. They proudly show the Christmas card with our children to their loved ones. They are our family.
Surgeons who have never met our family or daughter but extend their time, expertise and contact information to help guide us through difficult decisions regarding her care.
Social And Care Workers who ensure we have a bed, pillow, shower, food, time, medical records and anything else that can ease the difficulty of our situation.
Julie our hospital chaplain who comes to pray with Mommy, Daddy and Audrey. She comforts and confirms our hearts in this time.
Nurses and ECMO technicians who may not get to sit during a 12 hour shift, stay late, clean our baby, dress her wounds, assess her vitals, wrap her in her favorite blankie and surround her with all of her toys and pictures.
XRay technicians who tug at our heart strings (you know who you are!)
Friends who send food, books, toys and soda.
Family who come to sit, visit and hug through our hurt.
Supporters who pray.
And a God who hears and answers prayer. I’m sure that I have left out someone or thing so important. But as I said the music is playing faster as I wrap this post up. So, I need to tell you about God’s gift to us today (aside from the obvious answer to prayer). Just before the doctors wheeled Audrey’s bed and machines to the OR, Daddy was giving her a pep talk. He excitedly called me over and asked that I watch Audrey’s eye. For the first time in one full week I witnessed our Cricket force her little eyes open with purpose. She heard Daddy tell her to fight and she listened. She pried those beautiful eyes open and attempted to focus on her parents for just a moment. And that moment was enough.
Psalm 138 New International Version (NIV)

Psalm 138
Of David.

1 I will praise you, Lord, with all my heart;
before the “gods” I will sing your praise.
2 I will bow down toward your holy temple
and will praise your name
for your unfailing love and your faithfulness,
for you have so exalted your solemn decree
that it surpasses your fame.
3 When I called, you answered me;
you greatly emboldened me.

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Can we talk about the “common” cold?

Can we talk about the “common” cold today? You know that “little” virus that has been going around lately? Most people go home, eat chicken noodle soup and rest until they feel better. This year viruses have been knocking people on their butts for weeks, or so I hear. Maybe you have found yourself sitting in a steam filled bathroom or hanging over a vaporizer to drain out all of that yucky, thick mucus making your chest feel heavy. Or you have taken an over the counter medication to find some relief. And thank heavens for that relief because work, the store, your social agenda (input any activity requiring you to bring your germs out of your home) is persistently calling out your name. And let’s face it, you just can’t handle watching one more rerun episode of ” the Walking Dead.” Oh how blessed it feels when all you have left is a little runny nose and some occasional coughs. I mean, you are feeling good enough to go grab some eggs, meet the girls for lunch and heck you may even manage to get through a shift at work!

Can I stop you right here? Did you know that when you sneeze you release millions of tiny particles into the air? Others can breathe those particles carrying the virus in and become infected. Sometimes, a person can carry the virus without showing any symptoms of being sick. For this reason it is important to always cover you mouth when you cough or sneeze. But don’t stop there! Once you have coughed, sneezed or even touched your mouth, eyes or any body part containing mucus membranes please wash your hands. You may not feel like they are “dirty” but germs could still be there. If you do not wash your hands those germs can be transferred to any object you touch (door knob, tissue box, your child’s toys) and infect anyone who then comes into contact with the object. If you are symptomatic, please stay home until those symptoms resolve to avoid sharing the germs. And if you absolutely must go out, wear a mask to reduce the risk of sharing (even if you feel silly or people are staring).

I know what you are thinking. This is common sense. Why is she so passionate about this? Because a runny nose to you is an ambulance ride to the emergency room for my daughter. A slight tickle in your throat is her admission to the hospital. A low grade fever for someone otherwise healthy is a stay in the PICU for my sweet girl. Your common cold is my child’s life support necessity.

Have you ever stood in the room and watched medical staff squeeze air into your child’s lungs to keep him or her alive? I have. It was not because she was in a car accident or other traumatic event. It was because she contracted a common cold. As I type this, my daughter lays medically paralyzed. A machine is forcing breaths into her lungs. I cannot hold her. She cannot play. Her eyes are hiding behind the medically induced sleep. So, I beg you to keep your germs at home. Do not spread them at the grocery store or work. Practice good hygiene and wear a mask if you must leave your home. Please do not allow your common cold to become my child’s death sentence.

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My Christmas Prayer

About this time last year I was heaving a bag filled with presents from the Ronald McDonald House to my daughters NICU room at the hospital across the road. The bag was so heavy and one of the handles snapped as I trudged through the snow. That was not going to keep me from giving my children a happy Christmas morning. Audrey was in her fifth month of residency and just had two major surgeries. As I rounded the corner a wheelchair came in view at just the right time. It could finish my heavy lifting. There would be no lights on a tree or stockings hung by the fire that year. Our tree was made of felt and continuously fell from the window where it was taped. I was fearful that our eight year old would be resentful. He surprised me. The best gift was seeing the joy he had in his heart and how he would help his baby brother and sister open gifts. The presents were just a bonus to him. Family and Jesus is what mattered the most.

This year my Christmas Prayer is that each person take time to think of and pray for those who are hurting. Set the presents aside for a moment and say a prayer for peace to enter each heart. And if you are spending Christmas in a hospital with a sick child, parent, spouse or friend, please know that you are in my prayers.

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