E's hair, camping, new positive behavior incentive, breathing

I took the boys to get fresh haircuts two days before J returned to school. The next day, E decided to give himself a second haircut in the bathroom. I found him, scissors in his hand, hair all over the sink. He chopped sections of his hair really close to his scalp. I tried fixing it by trimming the surrounding areas, but it still looked bad. I took him to the barber and we had no other choice than to buzz his head. His hair has never been this short. Everyone asks, "what happened to your hair Ethan?" and he will say one of three things; a. " I don't like it" b. "I cut my hair" c. "my mom said I had to cut all my hair now." Poor baby. He likes his brother's spikes. Unlike J, E has thin, limpy, easy to style hair that grows slowly. I told him we just have to start all over, that it will grow back, that he must never cut his own hair again.   EB just thought it was funny and wanted to make sure I took pictures. 

My grandparents were staying with us the first two days that J went back to school. But on J's third day, E and I were home alone all morning. E is hilarious! He began to pretend like he was talking to J. "J, come play... stop J! ... mom! J is hitting me." 

me: "really? tell him to come here right now... Should I spank him?"

E: "Yes, really, really hard" (giggling) 

me: "Do you miss your brother?"

E: "What's miss?"

me: "Do you want your brother to be here with you?"

E: "Is he going to bring me something?"

Then later ...

E: "Abuelitooo [spanish for grandpa], abuelitoooo, you can't tickle me anymore abuelito."

--It was right around that time when I realized that I needed to stop what I was doing (washing the dishes) and play with him a little while. 

When we went to the store later that day, and as I pushed him alone in the shopping cart, I realized that I really need to cherish E this last year that he is home with me before he begins kindergarten/ before I return to work. I look at his four-year-old hands and its difficult not to feel a little sad. He is growing up so fast. He is two years younger that J, but he is already wearing the same size clothes and shoes that J wore one year ago.

E is always pushing his limits. Lately he misbehaves when he wants attention. We've tried time-out, talking to him, spanking, taking away television/computer time-- nothing seems to work consistently. I thought of rewarding his good behavior instead, but I did not want him to depend on a prize to be good. I came up with drawing a big star, happy face, or heart on his back when he listens to me, or waits patiently. He can't get enough of it. He was confused at first because he said he could not see it, but I whispered to him "its a prize to feel not to see." He has always responded well to touch, likes to be held, likes to put his head on my tummy, likes to be tickled, likes stuffed animals, blankets, clothes that are soft to touch. Everything he likes is sofly-something; his sofly-shoes (crocs), sofly pants, sofly-blanket, sofly-bear, sofly-tummy (mine or his grandma's which he likes to lay his head on). So the feeling he gets when I draw something invisible on his back, is really a special reward for him. Each child is so different, reminds me of when I learned about 'learning styles' and Howard Gardner's 'Multiple Intelligences' at school.  

E enjoyed camping and tire-inner-tube tubing last weekend. Surprisingly, he became tired sooner than J and enjoyed sitting on a rock with his feet in the water next to his aunt A and uncle D. E breakthrough # 2. It is possible to 'tire'-him-out ;o) He is usually so active, jumping around, climbing on furniture, anything-- just moving. After tubing and sitting on the rock, he fell asleep on a camping chair (at about 5 pm) from which we transferred him to the car, then, once we arrived home, to his bed-- he slept until the next day!

E continues to occasionally experience asthma (bad word. I'm still in denial) symptoms. I'm not sure what triggers it, since this is new for him. Sometimes when he becomes upset, or gets tickled, or one time when he was walking up a hill, or just wakes from sleeping... he will experience shortness of breath which I recognize either from a frustrated cry in which he attempts to catch his breath, or because he actually says, "I can't breathe," or complains of chest pain. His pediatrician heard heavy wheezing in his chest during his last cold in April, and that's when we heard that nasty word in reference to E for the first time... asthma. He was given an inhaler, which I now carry in my purse. He had an episode while we were shopping at Costco about 2 months ago that scared me a little bit.

pictures: painting by E, E's feet in the river, E's hair after he gave himself a haircut

J's tooth, 1st week of school, hair, camping

I took J to the dentist because of a new tooth that sprouted right behind his first loose baby tooth. The dentist's advice was to try to wiggle it out. J worked on it for a couple of days and just before we were ready to give up, I decided to take pictures and record a short video in which he actually pulled it out himself. I posted the video of him pulling his tooth out on You Tube (link on left).  

J began 1st grade last week. The school day is longer compared to kindergarten and his enthusiasm for the new school year dwindled after just the second day. He keeps telling me that I need to pick him up earlier from school the 'next' day because his teacher told him that "the days will get shorter" -- which he misinterpreted. I am confident in J's academic ability, as he is very intelligent. However, he needs to work on his social skills. He's going to a new school this year, so the first day I asked him, "J, what did you do at recess?"

J: "sit in the shade"

me: "did anybody else sit in the shade?"

J: (in an indifferent tone) "no."

me: "J, you need to play at recess and find kids to play with. OK?

J: (in a 'whatever' tone) "okay"

DAY 2

me: "How was school?"

J: (after some hesitation) "good."

me: "what did you do at recess?"

J: "sit in the shade"

me: "did anyone else sit in the shade?"

J: "no."

me: "J, the reason you have recess at school is so you can get exercise when you play and so you can talk to kids and make friends. OK?"

J: "okay."

Needless to say, I worry about him. I know exactly what he does. He sits in the shade where its cool, finds a twig and a blade of grass or any other object laying around and makes them talk to each other, argue, transform into a robot or animal, jump, crash etc. until the bell rings. On the third day he told me he played. I ask him about other things too, of course, and I praise his effort on his classwork, but I know that its also important for him to play with other kids. I'm caught between allowing him to be who he is or interfering.

J's straight and thick hair is very unmanageable just like his father's. EB had long hair when I married him which he managed to slick back by wearing a net on his head overnight. Short after we got married, he got a buzz cut which he has kept ever since. It's all or nothing. EB and J cannot get medium length haircuts because their hair will just stick straight up. So I decided to take the barber's advice and allow J to get a 'spikey' cut this time. Now his hair can do what it naturally wants to, stick straight up, and it looks like its intentional. What a relief! Just add gel and go! J likes it. He feels cool. He looks older :o(   

I went camping with my sister, her husband and my boys last weekend (EB went boat fishing in Ensenada). The kids went tubing down a short strip of the river at the La Jolla Indian reservation where we camped. I would help them get on their tire-inner-tube on one end, and my brother-in-law would catch them on the other end. It really brought out the daredevil in J. He loved a section that had a small waterfall and a strong/fast current. He flipped over twice, but loved it.   

pictures: J's new hair, J's painting of himself with Jesus, J's loose baby tooth- just a couple of minutes before he finally pulled it out, J tubing at the La Jolla Indian Reservation

E & J career goals

For some time now, my four-year-old son, E, says he wants to be a 'volcano firefighter and a paramedic' when he grows up. Last summer they visited a Fire Station where they were able to go inside a fire truck and ambulance.  Since then, both he and Josiah, get very excited whenever they see a fire truck, ambulance, or Fire Station. They once witnessed an elderly lady being taken by paramedics and one of the firefighters there (also at the scene) gave them stickers. They know their sister was taken to Children's hospital in an ambulance and Ethan sometimes also says he wants to be a doctor 'to help babies that are very sick.' They have also seen pictures of when their dad was a fire fighter for the CA Department of Forestry. 

When my 6-year-old son, J, told me he wanted to be a doctor, I explained to him that there are many kinds of doctors. I suggested that we find a book on different 'doctor jobs.' Since then, he decided -on his own- that he wants to be the doctor that 'takes babies out of mommies' tummies.' When I took him to the library this week, he asked the librarian to help him find books on doctors. He found a children's book on anatomy and also a children's book titled, 'The Obstetrician.' He and I discovered together that a 'doctor who takes babies out of tummies' is an obstetrician . The book is age appropriate and I've read it to him already. He is fascinated with understanding baby development and is set on learning all he can, so that he could become an obstetrician one day. I was a little apprehensive about explaining the birth process to him. When he has asked me about how babies are born in the past, I've told him that when he was born, the doctor made a small cut on my tummy (I had 3 c-sections) and then closed it back up. I was sort of hoping he would not be so persistent on learning obstetrics at age six.  

However, I don't take either of their career aspirations lightly. I decided I wanted to become a teacher at the age of five.

picture: 'baby in tummy' drawing by J   

Celebration of Life Event excerpt

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.

----------------------------------------------------------------------------------------------------------------------

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:

13th annual Ayala-Negrete Family Reunion

This year's reunion was held in Ensenada, BC. We camped-out at my tia Lupita's so my grandfather (who is ill) could attend. My mom's side of the family has grown to sixty-some member's -- about double the number of members since our first family reunion in 1993. I've contributed four new members :o)
Each reunion is special. We had sports, games, pools, piñatas, an astro jump, new members to welcome, a camp fire, and great food. I feel very fortunate to have such a large, caring and close family.
My favorite part is the end when each member speaks-out to thank the organizers, share thoughts/ feelings. Whether it is some advice, a great story, or just the warm feeling of acceptance, everyone takes away with them something different and special. For me, the highlights of the reunion were;

1. Seeing Estevan. Since my tio G's passing, we see very little of his family. My tio G is very special to me. Having Esteban (his son) at the reunion felt like having part of my tio still with us and that is so important to me.

2. Listening to my cousin Felipe. He has so many great stories to tell about his backpacking trip through Mexico. More than stories, the lessons he has taken away from this experience transformed his outlook on life and inspired me.

4. Seeing my brother J as a new father. He is such a caring dad to his new baby son of 3 months.

5. The family prayer my tio Jaime led us in. The majority of our family has now come to know Christ. The unity our family shares is only a reflection of the great work He continues to do in our lives.

6. Seeing my boys E & J have such a good time swimming and playing with their cousins, calling them by name. When we were there E told me, "mami, this is the best day ever!"

7. Having all four of my grandparents with us. My abuelita S is a breast cancer survivor and suffers from high blood pressure. My abuelita L got a heart-pacer this year. My abuelito E is living with liver disease, diabetes and anemia. My abuelito O suffers from severe arthritis. I feel so blessed to have them and I love each one dearly.

8. Watching my husband E be part of the family-- I think he fits in more than me :o)

9. Notice and really appreciate all the hard-work and expense that went into keeping and feeding 60-some people for three days. When I was younger this is something that I overlooked.

10. Listening to my cousin Edgar be so enthusiastic about his future, his career, adulthood.

11. Seeing a picture of my Ava that I had not seen before on my tia A's camera.

picture: fig tree at my tia Lupita's house

All I need

There is no happily ever after for a bereaved parent. There is no goal for security, economic status, contentment. There are no plans for an accomplished future. Everything seems more finite. Sanity hangs on a thread. Reality is raw, crude. Fate, irreversible.

You're never too old to go back to school. You can always begin your diet next Monday.
Can I get a deferment? exception? omission? waiver? forbearance? extension? second chance? miracle?
The answer had always been yes until the death of my daughter.

I feel anxious. I feel incomplete. I sit on my hands. I walk in circles. I stop. I look around and realize that I've started 10 different tasks. That I don't remember what day it is. I'm tired of much activity that takes me nowhere, seems to accomplish nothing-- nothing I can find any satisfaction in.
I remember when I used to beam with fulfillment after completing a scrapbook page, organizing my junk drawer, cooking a good meal, polishing my nails.
I lived by to-do lists. All I need is to do these five things and then I can be done, content. All I need is eggs, butter, paper napkins... oh and that book that I really want to read to the kids.

I felt the Lord's compassion and presence in my life more palpably in the weeks preceding and following A's passing than I ever have in my life. Her illness and subsequent loss taught me much about compassion, suffering, love, and Christ's sacrifice... which I've simply soaked up but have no energy to share --- as I feel that I must.
I see A's life as God's gift to me that brought with it much responsibility. Responsibility to become a compassionate person, to dedicate my life to giving, to comfort someone whose hurting or wash someone else's dishes. If I could just get off the ground.

I need my daughter.
But in this lifetime, and for now, 'all I need' is to feel joy in hope. In God's promise of eternity-- while struggling to be functional now.
My boys need to know God's promises are real.
All I need is God.

picture: Ava's blankets