As I had reported a week or so ago my daughter was having some medical issues. Last week those issues became ones her doctors felt needed intervention. My daughter spent four days in the hospital due to severe impaction (again). My thoughts "Oh No Not Again!!!"
There was a parade of nursing staff coming in and out of our room every hour on the hour from 7 AM to 11 PM pushing laxative laced gatoraid. My daughter cried because she could not believe that she was in this horrid place again and wanted to know why God had abandoned her.
It's hard to find hope in the midst of pain, but I urged her to be open to Gods love and guidance while we were in this place. Her youth pastor reminded her to find the joy in all situations and understand that there was a reason for us being there. At first even I had a hard time finding any joy in my daughters illness. We were facing the possibility of new medical issues and a barrage of more tests.
Yet there it was, slowly but surely showing itself to me. My daughter found gratitude for her loved ones, a nurse shared her story with us and we shared our faith with her, one of her doctors was humbled and my daughter's joy began to shine through out the staff. So although it was by no means a fun time, God was in it. He was in every moment.
Tuesday, September 21, 2010
Monday, September 20, 2010
Monday Blahs
Monday is always looked at as the start of the work/school week. It is the one day more people look forward to passing by then any other day. It makes a Sunday go by at the speed of light and seems to take on a lag of its own.
One of the things I learned recently is that every day is an important day. It's one more day God has included me in His plan, here on earth. It's one more day to say I am sorry and one more day to forgive. Its a start over point, a day to seek the joy in every moment. It is one more chance to take in the beauty God created and one more day to spread the word of God.
Monday has become a plague all its own. We allow a beginning day of the week to weigh us down and stop us from living in the moment. Some of us miss church, family events, a night out, because tomorrow is Monday. This is an excuse we use to pardon us from living today.
After spending a few days in the hospital with my daughter, and sharing our faith with others while we were there, I began to understand how important each moment is. Monday is like any other day. It's a gift to be a part of the bigger tapestry of life. Will you allow the popular concept of this day stop you or will you treat it as the chance we all have been given?
For me Monday has taken on a new role. Monday is not the beginning of drudgery. It is about stilling yourself and setting the tone for the rest of the week. Should God see fit to give me Tuesday or any other day of the week for that matter, than I will face it with the same glad heart.
One of the things I learned recently is that every day is an important day. It's one more day God has included me in His plan, here on earth. It's one more day to say I am sorry and one more day to forgive. Its a start over point, a day to seek the joy in every moment. It is one more chance to take in the beauty God created and one more day to spread the word of God.
Monday has become a plague all its own. We allow a beginning day of the week to weigh us down and stop us from living in the moment. Some of us miss church, family events, a night out, because tomorrow is Monday. This is an excuse we use to pardon us from living today.
After spending a few days in the hospital with my daughter, and sharing our faith with others while we were there, I began to understand how important each moment is. Monday is like any other day. It's a gift to be a part of the bigger tapestry of life. Will you allow the popular concept of this day stop you or will you treat it as the chance we all have been given?
For me Monday has taken on a new role. Monday is not the beginning of drudgery. It is about stilling yourself and setting the tone for the rest of the week. Should God see fit to give me Tuesday or any other day of the week for that matter, than I will face it with the same glad heart.
Tuesday, September 7, 2010
Battling Illness on a Mental and Spiritual Level
When a child gets sick, it is never a fun journey for the parent or the child. Normal childhood illnesses can be enough to unnerve any parent. But what happens when you find out something more serious is going on? How do you cope from day to day and how do you explain it to the child?
I have faced those very questions. My daughters journey into being was tough from the get go. I had an extremely difficult pregnancy, and then two days prior we both almost died. Let me also reveal to you that I did not know Christ at this time and I had not accepted Him into my life. Why does that make a difference you might ask...well I would have had someone to lean on, someone to share my worries with and know that no matter what we were loved and He was there.I would have known that if I had died that day, just where I was going. I did not know that the birth of my child was the beginning of my journey in seeking Him out.
Only 24 hours went by when my daughter was placed in NICU for developing an infection. The doctors were astounded that she got so sick so fast. This was the beginning of her struggles. At 13 months old she developed a fever of 105 degrees for 4 days. We battled the fever from home (doctors orders) for two days. Then I got mad and we took her to the hospital. My daughter Clarice could no longer walk. We ended up removing her from the local hospital and taking her to All Childrens Hospital. They told us that the other hospital was too delayed in their response and what ever caused the problems had passed, but there was a possibility for permanent neurological damage.It was too soon to tell.
I took that in stride. Suddenly at age six my daughter started seeing auras and was reaching for colorful dots. She had drop attacks at school and had gotten hurt from her many falls. We took her to the eye doctor because they thought she might have pressure on her eye. The eye doctor was stunned when he realized what might be going on and sent her for an MRI. The results came back on a Friday and the doctor called me at work at 5:30 "Ms. Morris they found a brain anomaly in your child's brain. We have made you an appointment on Monday with a neurologist." Panic set in...what did this mean? I had so many questions and no answers. This occurred shortly after I had accepted Christ and went through with Baptism. So I did the only thing I knew to do. Sunday I went to church alone, sat in the back pew and cried the entire service. I prayed the entire service, begging God to be present in this situation. When I left to go home, I had the strength I needed to take on the Monday appointment.
Her prognosis was Periventricular Nodular Heterotopia (PNH) a rare genetic brain disorder. The prognosis was that the disorder would progress and she may end up mentally challenged. I told the doctor that if this was his attitude we would be seeking another physician because last time I checked he was not God. I respected the information he was giving me, but without hope I could not cope.
We found a marvelous neurologist who believed that the diagnosis was incorrect, that in fact when Clarice was 13 months she had developed encephalitis which left scaring in the brain. He began treatment right away. Within six months Clarice's adhesion had shrunk by 50% and I am pleased to tell you that they can no longer see the scaring in her brain. We still face adversity, and she still has some emotional hurdles to face. But she was not the lost cause our original physician wanted us to believe she was.
Now my original question, how do you get a child to understand that they have medical issues that sometimes sets them apart from other kids. My mantra is "Your only as disabled as you allow yourself to be" meaning if she wants to go against the odds and do things she was told she would never do, than I supported that and I would do my part to help her succeed. She has also had to understand that some restrictions are for her own safety, and she must also embrace those. The major ones are no games that could cause head trauma. This often upsets my daughter because she wants to play soccer.
As a parent, my coping was and still is through prayer. I believe that God has our fate firmly in His hand. The outcome is not always what I prayed for, but there is always a purpose in it. As you read in our previous post we are dealing with a setback on her Digestion issues. Clarice has a multitude of medical issues, but if you met her you would not guess that she has faced more in her first ten years of life than most people in a lifetime.
My goal in sharing this with you is that if you have a child who has special needs, how we react and what we do will determine how they move forward. For us keeping it as positive but as real as possible made all the difference in the world. My daughter knows that I will not hide any of her medical issues from her, and she knows she can talk to me about any of them. I always direct her to prayer and tell her to be true to who she is and keep on keeping on.
I have faced those very questions. My daughters journey into being was tough from the get go. I had an extremely difficult pregnancy, and then two days prior we both almost died. Let me also reveal to you that I did not know Christ at this time and I had not accepted Him into my life. Why does that make a difference you might ask...well I would have had someone to lean on, someone to share my worries with and know that no matter what we were loved and He was there.I would have known that if I had died that day, just where I was going. I did not know that the birth of my child was the beginning of my journey in seeking Him out.
Only 24 hours went by when my daughter was placed in NICU for developing an infection. The doctors were astounded that she got so sick so fast. This was the beginning of her struggles. At 13 months old she developed a fever of 105 degrees for 4 days. We battled the fever from home (doctors orders) for two days. Then I got mad and we took her to the hospital. My daughter Clarice could no longer walk. We ended up removing her from the local hospital and taking her to All Childrens Hospital. They told us that the other hospital was too delayed in their response and what ever caused the problems had passed, but there was a possibility for permanent neurological damage.It was too soon to tell.
I took that in stride. Suddenly at age six my daughter started seeing auras and was reaching for colorful dots. She had drop attacks at school and had gotten hurt from her many falls. We took her to the eye doctor because they thought she might have pressure on her eye. The eye doctor was stunned when he realized what might be going on and sent her for an MRI. The results came back on a Friday and the doctor called me at work at 5:30 "Ms. Morris they found a brain anomaly in your child's brain. We have made you an appointment on Monday with a neurologist." Panic set in...what did this mean? I had so many questions and no answers. This occurred shortly after I had accepted Christ and went through with Baptism. So I did the only thing I knew to do. Sunday I went to church alone, sat in the back pew and cried the entire service. I prayed the entire service, begging God to be present in this situation. When I left to go home, I had the strength I needed to take on the Monday appointment.
Her prognosis was Periventricular Nodular Heterotopia (PNH) a rare genetic brain disorder. The prognosis was that the disorder would progress and she may end up mentally challenged. I told the doctor that if this was his attitude we would be seeking another physician because last time I checked he was not God. I respected the information he was giving me, but without hope I could not cope.
We found a marvelous neurologist who believed that the diagnosis was incorrect, that in fact when Clarice was 13 months she had developed encephalitis which left scaring in the brain. He began treatment right away. Within six months Clarice's adhesion had shrunk by 50% and I am pleased to tell you that they can no longer see the scaring in her brain. We still face adversity, and she still has some emotional hurdles to face. But she was not the lost cause our original physician wanted us to believe she was.
Now my original question, how do you get a child to understand that they have medical issues that sometimes sets them apart from other kids. My mantra is "Your only as disabled as you allow yourself to be" meaning if she wants to go against the odds and do things she was told she would never do, than I supported that and I would do my part to help her succeed. She has also had to understand that some restrictions are for her own safety, and she must also embrace those. The major ones are no games that could cause head trauma. This often upsets my daughter because she wants to play soccer.
As a parent, my coping was and still is through prayer. I believe that God has our fate firmly in His hand. The outcome is not always what I prayed for, but there is always a purpose in it. As you read in our previous post we are dealing with a setback on her Digestion issues. Clarice has a multitude of medical issues, but if you met her you would not guess that she has faced more in her first ten years of life than most people in a lifetime.
My goal in sharing this with you is that if you have a child who has special needs, how we react and what we do will determine how they move forward. For us keeping it as positive but as real as possible made all the difference in the world. My daughter knows that I will not hide any of her medical issues from her, and she knows she can talk to me about any of them. I always direct her to prayer and tell her to be true to who she is and keep on keeping on.
Tuesday, August 31, 2010
Set Backs
In living our lives day to day, we tend to get caught up in the good things. Which is an awesome place to be, don't get me wrong. But when there is a setback...its like some one pulled the chair right out from under you. My daughter has gastreoparisis, (which means digestion is effected). In times of stress she gets sick and her stomach acts up. This occurred and panic set in. We both were so upset and so worried. We both spoke the words "not again, please God, not again." She lost 4 pounds in two days. However we prayed, we did what the doctors told us to do when this occurred and most importantly we prayed. I am happy to report that she is two pounds up in weight and the stomach has settled. Praise God!
Monday, August 2, 2010
August 2, 2010
Decided to create our own family blog. We wanted to share our journey through my daughters day in the life of a homeschooler. She is no ordinary homeschooler, she has battled epilepsy, encephalitis, sleep disorder, Gastreoparisis and CAPD. We took on homeschooling after a 2 week stay in the childrens hospital and a month at home in bed with a feeding tube left my daughter a quarter behind. So far it has been the best decision we have made. We hope to share our successes and the long roads with you. We want our journey to help others blaze their own trail.
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