Thursday, July 24, 2014

OH CBD Where art thou?

We have been dosing Edmond with CBD oil for 8 months. 

As we slowly increased the dose, he went from 7 seizures a day to 3 a day, and they lessened in intensity, duration, and recovery time was better. And results have been consistent. 

At the end of June, I miscalculated when I needed to get a new batch of oil for him and he was off of it for a few days. During those days we visited the neurologist and talked about waiting a 2 week period to begin again so we could see if it was really helping his seizures or if it was some kind of fluke. Especially the neurologist didn't want us to waste more money on it if it wasn't really helping him. We have been paying about $480 a month for the oil, and he is not even at a full recommended dose yet. So we have been holding at the mid range dose. 

So we decided to go ahead and wait. We did it for about 8 days. After 3 days, his seizures intensified, from being 10-20 seconds (just a flexing of the arms and face) to lasting over a minute and were physically stronger involving his entire body stiffening and recovery time would be over an hour long. This was happening about 3 times a day, and would cluster, and have two in a row, which we rarely see clusters since we started CBD, I almost never saw clusters while he was on the CBD. 

So on Monday night, July 7th, I couldn't take it anymore and put him back on CBD, didnt gradually introduce it this time, just went back to his previous dose of 2ml 3x a day, which is 75mg a day equalling 2.34mg per lb. Therapeutic dose is 3-5mg per lb. So he is still not at a full dose that he might need.  The next day, seizures were lighter again. And he smiled for about an hour during therapy. Which we did not see smiles from him since he was like 3-4 months old, and especially not big smiles.. it was soooo sweet. The rest of the week was 1-2 seizures a day, some days no seizures, and they were back to being light again 10-20 seconds and fast recovery. Today is July 24th and seizures are still light and we didn't see any today either.  

So guess what? CBD works! We believed in part before, but now we super believe. 

We are thinking about growing it for him ourselves and will be moving in that direction I think. He has his card and everything is legit, but it's a big process and commitment but I cant see us paying for the oil long term.  Get ready for an upcoming fundraiser again... starting to plan it out now, but I like the idea of doing another 5K, but doing it locally here... it's a great, healthy, and uplifting way to come together for Edmond... and continue to get him the medicine he needs until we can figure out the process for ourselves... 

THank you for all the love and support! Hoping to get more smiles out of him soon, here's a pic of that day for my proof and my motivation to keep fighting for him. 

Such a handsome sweet loving boy. He is such a blessing of love and sweetness.... and dimples! 

In other news, we got a blue curb for Edmond! Victory!

We are in the process of getting his diapers paid for by Medi-Cal. Victory!

And now that he turned 3 on 7/7/14, He is eligible for school services through the school district and is in the process of being enrolled in school for the Fall... I'm super nervous, but I think his nurse Ryan, will be able to attend with him, so that will be such a comfort to me. The school is amazing and will keep him busy with activities and exercises that he needs through the week. We toured the school and Eden loved it and got to see all the other kids like Edmond there, so that was such a blessing as well and that she knows Edmond is going to school like other kids. We are really blessed to live in an area that has such a great program, so I guess it's not the worst thing to live in Daly City after all :) 

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” 

Monday, September 23, 2013

Big Brother Edmond

Thinking about this post, we have so much good news to share... 

On August 18, 2013, Edmond became a big brother to our newest family member, baby Grace. It's been a challenge juggling our now three children, but the support of our family and friends during this transition has been a great help to us. Grace is a beautiful and healthy baby and we are so thankful for the blessing of this new baby girl. 

Edmond is growing so big, he looks more like a 4 year old than a 2 year old. We recently received his new wheelchair (see pictures) which they put his nickname "Edmondee" on the seat. Edmond continues to eat well, and has been having 6-7 seizures a day, up from 3-4 a day, but down from 20 a day. Some days he has less, yesterday we didn't see any seizures so that was great. Overall he is pretty alert and has been responsive during his therapy time with cooing, looking around, kicking his legs and waving his arms, some grasping with his hand. We continue to hope that he will improve in his head control. Edmond is in the process of getting fitted for a stander, which is a piece of equipment that will help get him upright and strengthen his legs but baring weight on them occasionally. Edmond has strong legs and arms despite his delays and a stander would be a good form of exercise for him. 

Edmond's new wheels

In July we were approved through Medi-Cal for 40 hours of nursing care for Edmond. The nursing agency sent us a few nurses to interview but either they were not a good fit or they did not want to do the job due to the lifting that is involved. My coworker told me that her daughter's fiance was and LVN and was looking for work. His name is Ryan, and we interviewed and decided to hire him to care for Edmond. The nursing agency certified him through their agency and Ryan began caring for Edmond on July 1st. Ryan has been such a great blessing to us. During the day from 9-5pm, Monday through Friday, Ryan is here to attend to Edmond, feedings, exercise, baths, body temperature, changing diapers, change of clothes, water, g tube needs, and morning medication. It was perfect timing for Ryan to begin, since I had just began maternity leave on July 1st and could train Ryan full time at home in regards to all of Edmond's needs. I return to work in February, but it will be such a relief to have Nurse Ryan caring for Edmond during the day so that we do not have to worry about him while at work. 
Here's nurse Ryan hiving Edmond his bath 
Mr. Ryan and Edmond getting his bath

Some of you may have seen the special on CNN regarding a family has been successfully using CBD or cannabinoids derived from marijuana plants to treat their child's severe epilepsy. After viewing this program we have been looking into this as a possible treatment for Edmond. There is little effect of THC in this treatment and if his seizures responded to it, we could possibly taper him from some of his seizure medications that have unwanted side effects. This could be a costly option for Edmond though since health insurance would not cover this as it is seen as an alternative medication treatment. It is produced in the form of a liquid which we would administer through Edmond's G tube as we do his other medications.  

Cannabidiol (CBD) is one of at least 85 cannabinoids found in cannabis.[2] It is a major constituent of the plant, second to THC, and represents up to 40% in its extracts.[3] Compared with THC, cannabidiol is less psychoactive, and is considered to have a wider scope of medical applications than THC,[4] including to epilepsy,[5] multiple sclerosis spasms,[6] anxiety disorders, Bipolar Disorder,[7] schizophrenia,[8] nausea, convulsion and inflammation, as well as inhibiting cancer cell growth.[9] 

Will update on our process in being able to begin this treatment for Edmond. I am working on getting Edmond a Medical Marijuana Card first. I have given the forms to his neurologist at Lucille Packard, but he is consulting with a another doctor first before signing them. Our next step will be to find a doctor who is already on board with these kind of treatments for children like Edmond. 

In other good news, Edmonds medicine "Onfi" which comes in pill form and we have been crushing and mixing daily, is now in liquid form, so we don't have to crush them up for very much longer, which mean less time and work for medication administration and also more accurate dosing for Edmond, so this was good news for us. Every little bit helps! 

The downstairs apartment is almost done being remodeled and we expect to move by either October or November to our new and more convenient home. Lolo Jaime has been working really hard on getting it ready for us, and it looks really nice with upgraded kitchen and bathroom and floors. I'm working on purging out our stuff and buying storage solutions to fit the five of us in this new space. It's the same size as our current apartment but will be on the ground floor so it's easier access for Edmond and our entire family, plus Eden likes to play outside and we can better supervise her once we are down there as well. 

Edmond doing his Physical Therapy with his PT, Naomi  and Occupational Therapist, Alison 

Thank you to everyone who continues to remember us in prayer. We are holding on to faith and asking for miracles for Edmond daily. Jesus said, "This is My commandment that you love one another, that your joy may be full." I'm not going to lie, we are often full of worries and doubts, fears and stress, but we are full of love over here and therefore, somehow we are full of joy too. 

God bless you in your own journey of life today, that your joy may be full too. 

Saturday, July 20, 2013

Just a hard day for mom

We are now 2 years into the life of a Liss family... It's hard to describe the daily torture that comes with it. Folks have tried to console us and tell us that we just have to adjust to our "new normal"... but how can torture ever feel normal? From what I can gage, some Liss kids have it worse than Edmond and some have it better.... My son Edmond, does absolutely nothing all day but lay there and stare in space, have a few seizures a day and then passes out for long spans of time. We have every service and therapy in place. We interact with him but with pretty much zero reaction from him. There are such minimal improvements or signs of progress. What kind of life is this for Edmond to live? I feel so sad today for him, I feel so tortured when he is unable to do anything, and so tortured when he has a seizure... today one single tear shed from his eye after his seizure. I cried. I know I am focusing on the bad today... If I were focusing on the good, I'd say, he has some good skills in swallowing if we put the food in his mouth for him, pureed only though. I'd say that I'm glad I was able to meet my little Edmond and didn't lose him in the womb without any answers as to why he didn't make it, it's probably amazing that our kids make it into the world missing their chromosomes. If I were focusing on the good, I'd say that he has the most kissable cheeks and face imaginable and he's the cuddliest boy in the world. This "pros and cons" speech about Edmond is pretty much a daily conversation I have with myself... not sure if that's even normal for a special needs parent, not sure if it will get better in time? How would I ever get better if my son doesn't? Will I really be able to cope with it better as time goes on? Will I be able to be strong if we have to say goodbye to him? It's unfathomable to think of not having him with us. I once dreamed of having a family of all sons... just wanted boys for some reason... Now I have a 3 year old daughter (who is my little amazing girl) and Edmond, and another daughter on the way... and I will love my girls, but I just want to burst into tears every time someone announces they are having a boy. I look at Edmond and I"m so heartbroken every minute for him, for me, for my husband, for his sisters, for this shadow of Lissencephaly that covers and reaches into every part of our lives and that somehow even taints every moment of joy that we happen upon. I dread the questions my girls will ask me as they grow up and wonder why Edmond can't do what other children do. I know I will answer them, and then probably fall apart later that evening over it. It's overwhelming to think of what we have to face daily, monthly, yearly, and still function as a responsible parent or spouse to our other family members, still work and interact with all the other stressors that come with life in general... I feel myself aging rapidly from this experience and there is no light that I can see at the end of any tunnel I can imagine.

Monday, June 3, 2013

1 in 100, 000

There are many statistics on Lissencephaly, but I did come across an article that stated it was 1 in 100,000 kids were affected.. and I always say that "we did always want to be special, but not this special." So as I go through each week, I often experience waves of shock still, that my son has a rare disease, and why us?, and so forth and so one... the same tape just replays, especially on hard days for Edmond.

I recently received a publication from my old alma mater, Vanguard University, that features different alumni and articles and updates on current and graduated students. There was a story in there on a little girl named, "Mercy," a daughter of two Vanguard graduates, who was diagnosed with another rare brain condition and in fact the statistic on her was 1 in 10 million.... I had to read that one twice... 1 in 10 million? Good grief I thought, that's super rare. She also has severe complications such as Edmond, but it appears she is able to walk and communicate with some limitations though. What struck a cord with me as I read their story, was the father's statement about thinking, "this is so unfair", and his struggle with his faith and what was happening to their daughter, thoughts that every parent would go through under these circumstances. But then the father stated that he realized that God's grace is also not fair, and yet God gives it to us freely. This is something that resonates with me, and that I will be chewing on for a good while still to come. As a parent who endures the daily battle of a child with special needs that Edmond has, you are looking for a way to escape the "it's not fair" tape that plays over an over again and for a way to make sense of things and finally  put that tape to rest. Thinking about God's grace... it just may be the glimmer that I'm looking for.

Theres a well known scripture, Jeremiah 29:11, that his frequently quoted and I have to admit, I get annoyed with how nice and sweet it sounds, when life seems to be dealing out bitter winds and scary waves. But on Sunday, as the preacher asked us to turn to it, the entire passage begin to jump off the page to me. If you look at the verses before and after this sweet little nices verse of 29:11, you find the whole picture of what was going on. God is speaking to his people who have been and are presently in exile, captivity, and in a very dark place. He is speaking to them in a desparate place, where fear and heartbreak are presumably the prominent features of their hearts... a place where they feel banished by their God.

Let's look at it... Jeremiah 29:10-14

10 This is what the Lord says: “When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place. 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.[b] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

There are times in our lives, when it seems like God is out to harm us, when He has allowed so much pain and difficulty in our lives that it seems that He cannot be a God who is "for us." I struggle with all my heart everyday as I watch Edmond, to still continue to trust God, to believe He has my best in mind and that he knows my name and Edmond's name and has a plan to give my family a hope and a future, but it's not easy.

I'm glad to have read the story of "Mercy" and to hear how her father is making peace with what is happening with her. Understanding grace, may be the key to it all in the end.  

Thursday, May 9, 2013

Faith in the Fish Bowl of a Suffering Child

Faith in the Fish Bowl of a Suffering Child 
By Candace Segrove 

Few people can understand 
The constant torture of the soul 
That is endured by a parent 
Watching, waiting, watching, waiting 
Your child suffering into the night 
Fearing the morning light 
Or what a new horizon may bring 
The ways you learn to overcome
The daily gnawing of your heart
Of unanswered questions
And incurable disease and disorder
How can faith begin to compensate
For the courage you have to muster
Just to hold your baby
perhaps a moment longer
And hold back your tears,
so you can live
And just function
And give all your love to this child
Wonderful child
To pray... yet, another prayer
Wave upon waves of unending prayers...
To feed them
and clean them
And serve them each hour
And still believe in Gods power
To intervene in miraculous ways
That is the type of faith that is tried by fire and sticks like glue
Not many people will understand
Nor be able to do
What you do ... What we do
But i still believe, if I reach deep down
God must see every sacrifice
and each tear in the night?
Each time that I cry?
Each question and each "why"
And each time I choose to believe
In a God that is present and loving and wise
Who still loves us when it seems
He has turned aside
From looking at us
Kept His favor from us
Finding it harder and harder to trust
Swimming in pain
no escaping the routine
The cycle of heartbreak and exhaustion that each day brings
The innocence of a face that glows everywhere it goes
As if there is something beyond what we know
I'm searching for treasure
as each shipwrecked day starts
But I'm finding that Hope
is as rare as gold in these parts