Monday, January 6, 2014

Our Story and Upcoming 5K Run for Edmond, Sponsored by Vanguard University

 Christmas 2013  
Edmond and family, with Grandma Liz, Uncle Elijah and Auntie Hosanna

My alma mater, Vanguard University of Southern California is sponsoring a 5K run for Edmond and our family on February 1st, 2014 during their Homecoming weekend. I thought it might be appropriate to share a little backstory on who we are as a family, this journey of life that brought us to Edmond, and the journey we are now on with Edmond.

My Two Edmonds 

My name is Candace, I am a native San Franciscan. I am married to Adonis, also a native San Franciscan and we have three children, Eden 3 years old, Edmond 2 years old, and Gracie 4 months old. My father, Edmond, for whom my son is named after was an evangelist and full time minister of the gospel.  He and my mother, Liz, and our family, spent over twenty years in ministry, working with drug addicted, homeless and hurting populations of people in an area called the Tenderloin District of San Francisco. 

Edmond Wong holding a weekly street outreach in San Francisco Tenderloin District

My father passed on to be with the Lord in March of 2008 after battling liver disease for a number of years. My mother, Liz, has continued to faithfully lead this ministry to the lost and hurting of one of the most desperate areas of San Francisco. You can read more about Calvary Street's ongoing street outreaches at www.calvarystreet.comI grew up as a pastors kid immersed in the experience of full time ministry and missionary work. My father played a huge role in shaping and defining my life experiences, being the most passionate and sincere person for Jesus that I have ever known in this lifetime. I now think of my father and my son as "my two Edmonds." Little did I know that the impact my father made on my life, would pale in comparison to the impact that my son, Edmond, would eventually make on my life. Ultimately, my son would redefine all of my roles in life to be centered around being a parent of a special needs child.

Candace with her Dad in 2005

Southern California College, Vanguard University 

I arrived at Southern California College in the Spring of 1999 and renewed my commitment to the Lord during my freshmen year. The following year, SCC became Vanguard University. The Lord used my time at Vanguard as a place of healing and restoration for me and it definitely marked the beginning of a deeper personal relationship with Jesus for me.  I still cherish the years I spent there and think of them fondly. During my time at Vanguard I served on the weekly Prayer and Praise team on Wednesday evenings, the Homeless Church on Sundays, Esther Prayer during the week, worked part time for the Social Sciences office, joined Hands Across The Border (HATB) during my freshmen year spring break and served
San Francisco Outreach Team, Spring 2002

on the San Francisco Outreach (SFO) spring break team during my sophomore year, leading the SFO team for my junior and senior years. SFO was especially dear to my heart and since it was a newly formed outreach for Vanguard (started by Laurie Edwards only two years previously). It was my hope to establish SFO as an ongoing ministry during spring break for years to come, which I'm glad to find it has been for many students classes after. 

I graduated from Vanguard in 2002 with a degree in Sociology and returned home to San Francisco to work with my father in his ministry. I felt the Lord calling me to serve my father and be at his side for a season, which I was actually reluctant to do since I had just graduated and had a degree and was anxious to get into my field of study and actually use my degree professionally. But I chose to obey the Lord's voice in this, and waited (somewhat) patiently until the Lord released me from my dad's side. I had no idea how precious this time would ultimately be in hindsight since my father would die only six years later at the age of 53. When the time came, nearly a year later, that I felt the Lord say it was time to find a job, I heard about a position the following day and by that next week I had a credible job in the field of social work. God reminded me again, His timing is perfect. 

In 2005 I was accepted into the graduate program at San Francisco State University and I completed my Masters of Social Work in 2007. My father would pass away the following year, but I was blessed to have him at my graduation ceremony with me. Shortly after graduating, I was hired into a full time social work position with Child Protective Services for the city of San Francisco.

Becoming a family... 

Adonis and Candace Segrove, April 2009
My husband, Adonis, and I were set up by our family members in October 2008, only months after my father had passed. I was 27 at the time with very little prospects for marriage in sight. Our family members who had been mutual friends for years, were weary of us being single and tried to sneakily invite us both over to watch a Forty Niner football game at his uncle's home, hoping that the two of us would hit it off. To everyone's surprise, it worked, and we quickly felt God calling us to be together. 

We were married in April of 2009. I was laid off of my city job as a CPS social worker the very month we got married, and a few months later Adonis was also laid off from his job. Talk about interesting timing! While we were looking for work and collecting unemployment, I became pregnant with Eden, only 6 months after we had married. We were newly married and living with family members, and now we were pregnant with no jobs to speak of. The blessing was that we had plenty of time to enjoy the pregnancy and be together and experience the anticipation of a having our first child together without having to deal with going to work, I called it, "babymooning". Eden was born in June 2010 and we quickly realized we really needed our own apartment. Adonis was hired for a position through a temp agency in September 2010, two weeks after he started, we felt God calling us to take a leap of faith and move into an available apartment. We had saved a down payment, but without knowing how we were going to come up with rent for the following month, we decided to trust God and just go. We moved in October 1st, and on October 10th I received a letter from my former employer calling me to come back to my full time position within a weeks time. God was just beginning to teach us together as a married couple that He is faithful to provide for us when we trust and obey His voice. 

Eden, 6 months old
Eden was 4 months old when I returned back to work and we soon learned I was pregnant again. I had to work almost up until the delivery date, because of my previous layoff, I had to work a minimum of hours in order to be allowed maternity leave. I just made the deadline by the skin of my teeth. 

Edmond was born on July 7, 2011. We were so excited to have a son. He latched well, breast fed well and was a healthy sized baby. He was beautiful and sweet and perfect. We took him home and all was well for 2 months. I soon began noticing facial expressions and strange responses that only a mother would pick up on. It took me a trip to the emergency room and two trips to the pediatrician to finally convince someone that something was not right. Edmond was having facial seizures, but I had never seen a child having seizures so I had no idea to even use the word "seizure" when describing it. He finally had a seizure in front of his pediatrician and I was advised to take him straight to the Pediatric Intensive Care Unit for monitoring and an MRI scan.

Edmond Daniel,  July 2011

How Do You Spell... 
L I S S E N C E P H A L Y? 

Edmond was one week shy of 3 months old, when the neurologist came in and told us the results of his MRI. Edmond had a rare brain disorder called, "Lissencephaly," I made the neurologist spell it a dozen times I'm sure. I could barely pronounce it at first. Edmond's surface of his brain had not completed in utero. We would later find out that he had a deleted parts of his 17th chromosome and that Edmond's condition was a spontaneous occurrence and was not genetic or inherited. These key parts simply did not form during his metamorphosis stage of life... the first few days after the egg is fertilized, which later manifests as an underdeveloped surface on his brain. This is the part of the brain that we need for thinking. "Lissencephaly" literally means, "smooth brain," and that is how the surface of his brain is, "smooth," without the grooves that a typical human brain has. 

Edmond during an inpatient stay and CT scan

The neurologist told us that Edmond would struggle with seizures his whole life, that they would get worse, that he would probably never crawl, walk or go to the bathroom without assistance and would not live a very long life. Needless to say, we were floored. We went through all the stages of grief and loss, shock, anger, denial... it was a tremendously difficult number of days and weeks that followed this diagnosis. My husband and I had both grown up with faith in church, had strong believers for family members and felt that God had supernaturally brought our lives together and we just could not believe that God was allowing this rare brain disorder, 1 in 100,000, to affect our son. We cried, we prayed, we begged and pleaded with God, we did everything we could think of, but we could not change the fact that Edmond's brain was not whole.

Edmond continued to have multiple seizures a day. He was given steroids to stop spasms, which we had to inject into his thighs.. that was not fun and it did not even really seem to work, the spasms returned for quite some time until he outgrew them on his own. He is on seizure medications which help to suppress the number of seizures he has but they have not controlled them completely. He is averaging 3-7 seizures a day, but they are mild seizures thankfully. When they shoot up to 20 a day, we usually have to explore new medications since his whole schedule becomes interrupted and the seizures cause him to sleep most of the day. 

Edmond during his inpatient stay for his G Tube,  January 2013
Edmond had a G tube placed in January of 2013, so that all his liquids can go directly into his tummy and bypass his respiratory system. Kids with Lissencephaly are at a very high risk for aspiration of the lungs and usually pass away from complications related to this, i.e. pneumonia and infection of the lungs. Edmond has a delayed swallow per his feeding studies, but thank you God, he has not had pneumonia and is not a sickly child in regards to catching colds etc... He is strong and healthy in every way, except for his brain. Edmond suffers from severe hypotonia and is unable to lift his head or body. Due to his condition, Edmond receives, vision therapy, physical therapy, developmental therapy and occupational therapy. Edmond needs special equipment for daily living which include a bath chair, a wheel chair, a feeding chair, a stander, and a G-tube pump for overnight feeding. The state pays for a nurse to come during the day and assist Edmond from 9 to 5pm with his daily needs, which has been extremely helpful in allowing us to feel like a somewhat normally functioning family. 

Edmond in his Tumble Forms chair and new Nikes

Edmond's new ride, with his nickname "Edmond Dee" on it..  (Edmond's nurse, Ryan, is in the background) 
Edmond getting fitted for his stander equipment
Edmond doing occupational therapy

Our three loves, Eden, Edmond and Gracie
Once we were able to accept that Edmond may not ever be able to play or interact with his older sister, we decided to brave out another pregnancy so that Eden could have a sibling to grow up with. We were blessed to have Gracie on August 18, 2013, who is now 4 months old at the writing of this post and extremely healthy and strong in every way. We continue to pray for miraculous healing and health for our son Edmond and we know that along our journey God has spoken to us and always reminded us that He is with us and sees us and that His blessing is with us. We cannot understand why our son was born without a completed brain, nor can we understand why we have been given this heavy cross to carry, but we are continuing to seek God for His answers to our questioning hearts and His peace for our daily lives. 

Edmond's Ongoing Needs, 
God's Ongoing Provision

Edmond will continue to need hands on assistance for the rest of his life. Expenses include special clothes for  easy access to his G tube, diapers, specialized equipment such as a bed frame with safety features for seizures,  medications not covered by insurance, hospital and medication co-pays, specialized strollers and mobility devices for handicap children, therapy equipment etc... 

We have recently been blessed to move from our second level apartment to a ground floor apartment in our complex so that we will no longer have to climb stairs when carrying and transporting Edmond to his numerous therapies and medical appointments. But our two bedroom apartment is feeling smaller and smaller with our growing family and eventually we are trusting God to provide us with a home so that Edmond can have a room of his own where we can also store all of his necessary equipment and make him comfortable. The Bay Area is one of the most expensive places to live, so buying or renting a house in this area would have to be a provision orchestrated by God, we are praying. Our heart is to stay in this area because of our much need community of friends and family that we have here. Thank the Lord for our extended family members of grandparents, aunts, uncles, and cousins who have been a constant support for us with Edmond, we couldn't do it without them. 

Halloween 2013 

I currently work full time in one of the most stressful professions in the nation, as a CPS social worker, which I heard was rated only second most stressful jobs to an air traffic controller, per an article in TIME magazine. I believe it is part of God's provision for my family to be in this profession but I am everyday feeling the pressure cooker of my family life at home coupled with the stress of my job and I know this is not an ideal situation for my family and my own personal health. Managing Edmond's care is just as full time as any job out there. My heart's desire is to be able to be home full time with my children, or find another line of work that is less intense. Please pray for our family that this would come together sooner than later. 

Thanks for reading our story and our journey. Please pray for us, prayer works! We don't know what God has in mind, but we know we are on His mind and He loves us. God bless you on your journey and may God be with you to comfort you, speak to you, and love on you every step of the way, no matter how difficult, it's the only way to live and get through this journey of life. 

5K Run Benefit for Edmond 

Where? VUSC 55 Fair Drive, Costa Mesa, Ca 

When? Saturday Feb 1st  2014 @ 10am 

Daddy with Eden and Edmond
Edmond and his Vision Board
Edmond and Santa, Christmas 2013

Peekaboo My Love
By Candace

Peekaboo my love…
…but you were the surprise,
We had to change our tune
To all our lullabies

We thought that you would walk
We thought that you would sing
We never thought they’d tell us
Not to hope for anything

Not anything?
We thought this could not be
We racked our brains and searched our hearts
And prayed ourselves to sleep

If only a thousand kisses a day would cure you
You’d be even better than our prayers
We always wanted to be special
But not this special…not this rare.

We count our blessings
And count each seizure …one by one
We hold you tightly in our arms
When there’s nothing to be done

Each day I wonder how much longer
Will you be here by my side?
How many kisses can I give you?
How many tears will we cry?

How many years will we have to live,
Being stronger than we ever thought?
How many meds will they give us for you?
How many doctors will we have fought? 

I now know how it feels
To love unconditionally
To be proud of my child
Thought they can’t walk, speak, or see

Though you can’t run into my arms
And say, “I love you too…”
One day son, we will take a walk together
Where everything will be new

We won’t need bodies and brains
Or this word… “neurology”
I’ll melt into your hug…
And whisper, “I was your Mommy” 

1 comment:

Anonymous said...

May God bless your child! He seems to be a strong and determined child. Just dont lose hope and be strong. He is a special child and will hold a special place. Take care you and your family.