This is an excerpt of what I wrote for Ava's 'Celebration of Life' gathering at Rady Children's Hospital held on July 11, 2007. I'm posting it because it briefly summarizes her condition/history. Her anomalies associated with her heterotaxy (cardiac and non-cardiac) were numerous and complex. The joy that she brings to my life is unmeasurable and I can only attempt to describe it.
Our daughter, Ava Mia Bonifaz was born on September 5, 2006. She weighed 7 lbs, 4 oz and cried loudly as the nurses speedily took her from the doctors’ hands to be transferred immediately to Rady Children’s from Mary Birch Hospital where she was born. At my 5 month ultrasound in May and in subsequent ultrasounds/fetal echocardiogram studies, they had determined that she would be born in critical condition. Her heart only had one ventricle and a common atrium; two chambers instead of four. Additionally, they were unable to locate her stomach throughout my pregnancy and feared her esophagus was blocked. I had a condition of increased amniotic fluid volume and they monitored my pregnancy closely because they feared I could go into pre-term labor. She was a miracle. She was born only a couple days before her due date, pink, at a healthy weight and crying (which meant there was no block in her esophagus as they anticipated).
All those things parents usually take for granted at the birth of their child were a miracle for ours. I remember going to Babies-r-us once during my last few months of pregnancy. I saw the baby girl clothes yearningly from a distance. When I came close to take a closer look, I felt I was trying to deceive myself, cheat providence. The perinatal experts as well as the cardiologist I had met were blunt and honest in informing us that our daughter might not survive her first month of life. My baby would not be able to wear her own clothes in the NICU, except for a hat, socks and receiving blankets. I left the store holding tears back.
I had a c-section so I couldn’t leave Mary Birch to see my dear miracle baby until the next day, but I saw pictures. She was beautiful. The next days my husband took me over on a wheel chair frequently and we’d stay for hours. I’d hold Ava’s hand or foot, sing to her, help with her diaper. She’d wiggle, sleep, cry, but always with her eyes closed. She wouldn’t open them until minutes before her heart surgery at 7 days old, another miraculous and happy moment. After her recovery, there came many happy moments; holding her for the first time, less tubes, fewer drips, visits from her brothers who also sang to her, bottle feeding her for the first time then breastfeeding her—her big beautiful brown eyes gazing at me. Then finally, bringing her home on October 3, 2006 after only a month in the hospital.
Altogether she would only spend her first and last month of life in the hospital with only a 3-day and another 4-day visit in-between in November and January.
Ava’s heart required two more heart surgeries which she was not meant to endure. Besides her multiple heart defects, she was born with heterotaxy, also known as Right Isomerism, or Ivemark’s syndrome. Her heart anomalies were part of a larger condition in which all her internal organs were affected. Ava had no spleen, a midline enlarged liver, two tri-lobed lungs and a right-sided stomach.
There was no way of knowing any of this by looking at her during her 5-month stay at home with us. It was easy for us to forget that her condition was so fragile. Besides her medications and frequent doctor’s visits, she lived as any healthy baby. She gained adequate weight, fed well, smiled, cooed, laughed, outstretched her hands to be held, played with her toys and took things to her mouth. She loved being held, her doll, carrots, and watching her brothers play and talk to her. She had the longest most beautiful eyelashes I have ever seen on a baby. I made bows for her hair and loved dressing her in pink. She was so loved and cherished.
Knowing I might not be able to keep her, I had defiantly named her Mia, spanish for mine. And soon after she came home I could no longer imagine my life without her. I planned and lived with her as if she’d always be with us. I purchased the dress she’d wear to my brother’s wedding (who was married two months after she passed) months in advance and her pink dress hangs in my closet still. Nothing could prepare me for ever losing her.
On March 13, 2007 she had respiratory distress followed by cardiac arrest. She was on a ventilator and many, many drips after that and until April 13, 2007 when she went to be with our Lord.
In the course of my journey with Ava, I saw the Lord; in the faces, smiles, feet, words and outstretched hand of every doctor, nurse, family member, brother and sister in Christ and person who He in His mercy and grace used to touch our lives through Her.
Though I cannot escape thinking of how old she’d be now, of the unreached milestones, of how incomplete we are without her, God sustains me, and His still, quiet voice reminds me that she is in His hands. Before she was formed in my womb, He knew her, He created her.
I have always loved children, and dreamed with having my own since I was very little. I chose to become a school teacher so I could work with children and also so my schedule would match my own children’s schedule. After my second child, I chose to become a stay-home mom and this allowed me to be home with Ava.
Maybe we were chosen to have such special children whose journey would be short but so very significant and extraordinary. I feel priviledged and blessed to have a daughter named Ava Mia Bonifaz who shared her seven months here on earth with me. God knows my heart. If in our pre-existence here on earth, He would have asked who would welcome His precious Ava into the world- even in its brevity, I would have volunteered gladly, eagerly and without hesitation. I thank God everyday for Ava.
If death seems unatural it’s because it is. In Jesus we have the promise of eternal life and everlasting love. Jesus said, “Because I live, you will live also” John 14: 19.
Now, I can say, ‘Come, Lord Jesus’ with some understanding. He has conquered death and He will end all present suffering. He will wipe the tears from our eyes and I will be reunited with my daughter.
I love you sweet, beautiful Ava Mia
Daddy loves you
Josiah loves you
Ethan loves you
Jesus loves you. He has taken away all your hurts. I know you are with Him now.
No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him. Isaiah 64: 4 and 1 Corinthians 2:9
Ava Mia, you are His.
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Little Elegy
Withouten you
No rose can grow;
No leaf be green
If never seen
Your sweetest face;
No bird have grace
Or power to sing;
Or anything
Be kind, or fair,
And you nowhere.
By Elinor Wylie (1885-1928)
Children of the heav’nly Father
Safely in his bosom gather;
Nestling bird nor star in heaven
Such a refuge ne’er was given.
God His own doth tend and nourish;
In his holy courts they flourish;
From all evil things He spares them;
In His mighty arms He bears them.
Neither life nor death shall ever
From the Lord His children sever;
Unto them His grace He showeth,
And their sorrows all He knoweth.
Though he giveth or he taketh,
God his children ne’er forsaketh;
His the loving purpose solely
To preserve them pure and holy.
Caroline V. Sandell-Berg (1855)
picture (top): Rady Children's Hospital San Diego
picture slide show, Ava Mia:
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