No matter where I go, there is one question I am naturally guaranteed to be ask. "How is the baby?" There is no way for the numerous persons asking to know just how difficult of a question it is to answer. I will try to provide a more complete answer for those few who keep updated through this blog. In providing this answer, I feel compelled to make you aware that the answer is unlikely to change - possibly ever.
Rebecca's daily life is something that I am not sure anyone can comprehend. She continues to have consistent and almost constant seizures. This is difficult to understand for those who do not know much about seizure activity other than the dramatic scenes provided in the movies. However, reality is much different. She experiences a wide variety of seizure types, which result from her incomprehensible brain injury. Seizures are merely a "misfiring" of the brain and its neuropathways. Rebecca's brain is severely impaired as a result of the extended time period that it went without oxygen (that she was dead). You have to understand that she was completely dead for at least 15 minutes after her birth and for an undetermined amount of time prior to her birth. There is little comparison for us because persons do not usually become revived after this time. This lack of oxygen and reintroduction of oxygen resulted in detrimental injuries. Even though the brain is suppose to increase in size dramatically over the first year of a child's life, Rebecca likely has less brain matter now than she did prior to her birth. Furthermore, as of the last MRI the brain did not develop the "white matter" necessary for her brain to communicate with her body. As a result, her seizure activity stems from multiple locations in the brain and is very difficult to control.
I believe I had explained that she has infantile spasms (a condition that makes anyone aware of it shudder). This is just a special kind of seizure that is associated with very negative outcomes for a child's development and for the ability to control the seizures. Each of these is evidenced in Rebecca. Her seizures very from her eyes deviating to her head jerking to her legs/arms bicycling. They happen so frequently and so differently that it is impossible to track how many occur in even a day or an hour. Some appear to be a welcomed escape for her while others seem to scare her into a horrific state of fear. A recent trip to the neurologist made me aware that not only does the medical world not expect her to ever be seizure-free, but it appears that the physician does not necessarily expect them to be any more controlled than their consistent and current state. Eventually, it is expected that the infantile spasms will transform to a syndrome that is characteristic of multiple and varied seizures that are potentially far worse in presentation than she currently experiences. Furthermore, the longer the infantile spasms occur without response to treatment, the worse the prognosis is for seizure activity and developmental outcomes. Rebecca has had these spasms without improvement since she was 5 months old.
A recent trip to the eye doctor also revealed that Rebecca is "not processing visual stimuli," as we had expected. Translation, she is not seeing anything. The doctor informed us that this is due to either the constant seizure activity masking processing abilities or to a lack of ability to process visual information in the brain as a result of its injury. Rebecca also has problems with congestion that is interfering with her ability to eat. She has a blackened tooth and tongue as a result of all the medication she takes. Rebecca has not yet smiled or indicated any enjoyment of life. She has no purposeful movement, and her muscle tone increases (tightens). We have an appointment tomorrow to determine how she is processing auditory information. We do know that she startles to loud sounds, but does not process the information to the point that she can orient toward sound.
I believe that this is a fairly full account of "how Rebecca is doing". Having said all this, it is impossible to convey the emotions of a mother's heart. I love her dearly. I am glad I can hold her, am saddened by her pain, and am aggravated when she does not allow my kisses (which is most of the time). She is able to communicate her emotions very clearly in spite of an absence of words or smiles. If you doubt this, come by when she is getting her medicine. You don't even need to come in, you will hear her communicating from the street. However, it does seem to be the worst kind of punishment to have to wait for heaven to completely meet her, but I believe we will recognize each other. As many of you know, my husband says our time here is like "the dot" and our time in heaven like "the line". I will have spent far more time with her in heaven than we can imagine here in the dot. God has assured me that she will be in heaven waiting, and I believe that part of her already is. As for my other girls, they have the opportunity to choose their eternal destiny. I can only pray that they will join their baby sister in heaven. I trust that in the presence of God's glory, we will be hard-pressed to mourn the experiences we missed with Rebecca during this mere dot.
After reading this, I am likely to get the other infamous question - "How are you doing?" I fear I have no good answer other than I am not doing anything. It is through the grace of God alone that I am able to breath, to stand, and to act. Sometimes I feel as if I am the silver being purified, but as long as God the Father is the silversmith I am in good hands. One thing is certain, God is still in control.
P.S. This is a formal announcement that Ryan appears to have hijacked my blog as a result of my neglect and a formal apology for the picture he posted (which will be removed) of me on the eve of the greatest sickness I have had in 15 years.
Tuesday, May 6, 2008
Saturday, April 26, 2008
The Birthday
Friday April 25, 2008 was Rebecca's 1st Birthday. I thank all of you for your continued prayers. Rebecca's condition has not improved, but we are hopeful for a miracle if it is within God's plan for her.
This is the cake that the girls made for their sister.
Please continue to pray for our family and especially for Susan, Katherine and Elizabeth.
Saturday, April 5, 2008
The Valley
Rebecca is still having seizures with the hormone therapy. The medicine is aggravating her stomach and she sometimes throws up her bottles. Please pray for her comfort and that the medicine will stop her seizures.
Her birthday is coming up in a few weeks, please pray that we make it through that time. There are so many hard memories from her first year, it is overwhelming. Please pray for Susan and the girls to get through this.
I cleaned out the garage. Haven't had time to do it over the last year in getting ready for the baby and dealing with the aftermath of her birth. I was going through things to take to the Biedenharn House when I stumbled across a plastic storage box. I opened it and it was baby toys. Then, I remembered getting them down from the attic at the beginning of April 2007 to put in Rebecca's Room. Susan had saved baby toys that were Katherine and Elizabeth's favorites. Last May, I was going to wipe the toys down and put them in Rebecca's room, but we never got around to it. One toy was a piano that Elizabeth would pound on. Another was a cube with specially shaped holes in the sides that you place the correct shaped toy in the correct hole. There were also a few hard back baby books like Good Night Moon and Polar Bear, Polar Bear. These were books Katherine read to Elizabeth to teach her to read.
It was hard for Susan and me to put these back in the attic. I guess, in the back of my mind, I have left them out all this time in case she got better.
Thank you to Susie and her friends for the nice Easter Baskets. Your kindness is overwhelming. Our family truly appreciated your kind words and encouragement. It was was a timely surprise and we are truly thankful for your kindness and compassion.
Her birthday is coming up in a few weeks, please pray that we make it through that time. There are so many hard memories from her first year, it is overwhelming. Please pray for Susan and the girls to get through this.
I cleaned out the garage. Haven't had time to do it over the last year in getting ready for the baby and dealing with the aftermath of her birth. I was going through things to take to the Biedenharn House when I stumbled across a plastic storage box. I opened it and it was baby toys. Then, I remembered getting them down from the attic at the beginning of April 2007 to put in Rebecca's Room. Susan had saved baby toys that were Katherine and Elizabeth's favorites. Last May, I was going to wipe the toys down and put them in Rebecca's room, but we never got around to it. One toy was a piano that Elizabeth would pound on. Another was a cube with specially shaped holes in the sides that you place the correct shaped toy in the correct hole. There were also a few hard back baby books like Good Night Moon and Polar Bear, Polar Bear. These were books Katherine read to Elizabeth to teach her to read.
It was hard for Susan and me to put these back in the attic. I guess, in the back of my mind, I have left them out all this time in case she got better.
Thank you to Susie and her friends for the nice Easter Baskets. Your kindness is overwhelming. Our family truly appreciated your kind words and encouragement. It was was a timely surprise and we are truly thankful for your kindness and compassion.
Saturday, March 1, 2008
Thank you and Update
I just wanted to thank each of you for your prayers and I thank God each day for everyone who calls or emails to uplift us. It is amazing how I can hold Rebecca while she is seizing and not cry, but a kind word, note, card or email reminds us of God’s working through the members of the body of the church and our tears begin. God is good and His presence is evidenced in the persons who pray for us and request that He keeps us close. It is evidenced in the hope that we have in our eternal life and our gift of salvation. Many of you have said that we are strong, but we are not- any strength you see in us is Christ. God provides us with the strength to get up and make it through the day. He is carrying us through this and He gives me enough troubled grace each day to make it through. I will be honest that some days, when I take my eyes off Him, I sink into darkness much like Peter sank in the sea. Pray that Susan, Katherine, Elizabeth and I keep our focus on Christ. We crave heaven now more than ever. Please pray that no weapon formed by the enemy will be successful against our family. I may not have the words to thank you for your prayers today, but I thank God for your kind thoughts and prayers for our family. Also, when you are going through something like this, you don’t always know what to pray for, so please pray for us.
Rebecca is now 10 months old. She is having no purposeful movement as a result of her brain injury and we were told a few weeks ago at the neurology appointment that her beautiful blue eyes are blind. Although she responds to light she has cortical blindness. Her seizures and spasms are still constant, but the medicine numbs her response. We have changed her medicine numerous times, but she is now on Topamax, Clonzopam, Depakote, ammoxicillin and Previcid. Because the seizures and spasms are still present, even on these meds, our neurologist has suggested that we try hormone therapy. This will not heal her, because her injury is permanent and severe; however, it may ease her constant pain. During this treatment she can develop ulcers and her immune system will be greatly compromised. So please pray for her comfort and health and that we will have the strength to make it through this next round of searching for her comfort.
Susan and I are not really sure why this is happening. It is deeply painful to hold a child that is seizing because you know that it is painful, but you cannot help. When I read or talked to her while she was in Susan's womb, she always responded to my voice. She would roll around in mama's tummy when her sisters would read to her. Now, she cannot respond and we don't know if she can even perceive that we are here. There’s nothing you can do to stop the neurons from short circuiting around the dead cells in her brain, the unwanted contractions of muscles and the failure of other muscles to rest or respond. It is also painful, because Rebecca does not smile, laugh, giggle, coo, reach for you or do anything else that her sisters did when they were young. She most likely will never do these things. But I know one day I will walk with her in heaven and I will not be amazed that she is healed, because we will be in the presence of Christ and He will have our full attention. God is good and His love is everlasting. I worry now less about where my girls will go to college; I worry more about where they will spend eternity. Where will you be in 500 years? Take a minute and reflect, what are you doing today that will count 500 years from now.
In the last ten months, I have read just about every textbook on pediatric neurology, obstetrics and gynecology, infant brain injuries, nursing text and manuals, fetal heart monitors, placentas and seizure disorders. I thank all my friends who are nurses and doctors who have helped us understand what happened to Rebecca during birth. She was perfect in the womb. If you’re about to have a baby, I urge you to read about the birthing process and study it. Do not be afraid to ask questions and Dads you must thoroughly interview the person who will take care of your wife. Also, there really is no protocol for resuscitation of a baby, one doctor told us that he would not have resuscitated Rebecca after five minutes without a heartbeat; Rebecca did not have a heartbeat until fifteen minutes after delivery yet resuscitation continued. The doctor won’t ask you about your preference, you must tell them. Most want to see if they can save a life, not if they should save a life. I have not found a neurologists yet that would tell me that Rebecca would have a good outcome with a 0 Apgar score at 10+ minutes. Susan had a peace when Rebecca was delivered, she knew Rebecca was dead, and was content with her being in heaven. Even though she has a doctorate in child psychology and understood severe brain injuries, she was not asked what her wishes were for Rebecca at 3 minutes, 5 minutes, 7 minutes, 10 minutes, 12 minutes or 15 minutes. So, please take a minute to talk to your OB about the worst-case scenario and educate yourself on their protocols. Any uneasiness in discussing this before hand, pales in comparison to the pain of living with a decision made without your input and according to a protocol established by people who don’t believe in heaven or hell.
If you are short on time and don’t have an OB, call a labor and delivery nurse and ask them who their OB is. If you ask for a suggestion of a good OB, they will usually tell you someone that they are associated with. So always ask them, “Who is your OB?” It is amazing how the answer will change when you change the questions asked.
Also, video the process. When I was growing up, I loved to hear my mom and dad talk about the day I was born. They talked about not knowing if I would be a boy or girl and how the swinging doors almost hit dad. So with my girls, I always placed a video camera in the room on a shelf and let it run, just so they would have an unedited memory of their birth.
I did not know until a few weeks after Rebecca was born that Susan was so close to death- she lost so much blood that she could have passed away. I thank God each day that Susan is still here; by all accounts she should have died. I shudder to think what our family would be like without Susan. It is a blessing and a miracle from God that she is alive.
I also wanted to post this picture. I snapped it last night when Susan was not aware. Most of the pictures that we have are posed for, so this is a picture of our daily life. Susan feeds Rebecca and this takes quite sometime, because Rebecca’s seizures disrupt feedings; however, she is still able to take a bottle. Rebecca is not asleep; she just has no control over her muscles. So she is either limp or experiences random contractions of different muscle groups. Daily life is horrible in a situation like this. Luckily, God gives us enough anesthetic to numb the pain, but no so much that we cannot experience suffering and draw closer to Him. He is faithful to his promise to transform us if we are willing to seek Him; however, conforming to the sadness in this world is a daily struggle.
Rebecca’s head circumference has not changed in several months. This is a major concern because it means the brain was so damaged that it has stopped growing; this is common in babies who go without oxygen for longer periods of time. Also, she has certain muscle groups that stay contracted constantly, so the complimentary muscle groups do not flex and therefore don’t grow. I did not comprehend the severity of this until we were at Children’s Medical Center in Dallas last year. Our doctor asked if we were having trouble changing her diaper because of her muscle contractions in her legs. I told her that we could massage her legs and she would eventually relax so that we could change her diaper and wipe her. Then she said we should always take the time during a diaper change to perform a few basic physical therapy steps with legs and hips. I gave a puzzled look and she said, “This will make it easier when you are changing her diapers when she is six or seven, sometimes the contractions make it to where you cannot open the hips to change the diaper and that can be problematic.” I am glad God was with me that day. It was His strength that kept me from falling to the ground and weeping. After all we had been through, I thought nothing could surprise me, but this did. This statement seemed so matter of fact to the doctor. It had not been revealed to me that she would never stop using diapers. I knew she was going to miss out on a lot of things, but I didn’t realize that she would not advance at all. In responding to the overwhelming crisis, I had really not looked that far down the road. Susan, because of her occupation had known for a longtime what the long term outcome would be. This was a long, quiet ride home.
Good news: God is still in control.
1. Susan had to resign from her job as Associate Professor at LSU Health Science Center. I asked her to pray about it and it was hard, but she decided to resign and give up her position so she could continue to be with Rebecca full time. So, we were going to eventually lose our health insurance. My concern was health insurance for Rebecca, as I could not find anyone to insure our family. A few days after she resigned, I received a call that a Judgeship was opening at the workers’ compensation court. I applied and was hired! The insurance is with the same company that Susan had at LSU! Lesson: Turn it over to God, take a step in faith and He will provide.
2. I was working two jobs and Susan was taking care of Rebecca around the clock. This was wearing her out mentally and physically and we had no time to share with each other or Katherine and Elizabeth. I wanted to help her get through this, so several months ago I started calling around. I called several nurse staffing places and could not find anyone to return a call to even offer a few hours of help during the day giving medicine or letting Susan rest while I was at work. Back in July, God placed a man in our hospital room one day who came to comfort us and told us a story of his grandson and a special nanny who was taking care of him. Months later, I bought a paper (I always read it online.) I began reading and noticed a child had passed away. It was the man’s grandson. I prayed about it and asked Susan to call him to inquire about the nanny. God put it on my heart to have her call, even though it was awkward. He immediately called back and said that he had been hoping for her to find a good job with a good family because she has been such a blessing to his family. He remembered visiting with us and referred her to us. So she came by and introduced herself. She has over thirty years experience working with terminal and special needs children. She lives within a mile of our house. She loves Rebecca and has only been with us a week, but she is an angel from heaven. Lesson: God is not bound by time, He sees your whole life at the same time and He will put people in your path to bless you when it is most beneficial to you. Also, obeying God usually makes you feel awkward, or different from the world, so if it seems awkward, then God is more than likely a part of it.
3. We talk to God more about things that really matter. For some reason, I cannot go to God anymore with certain prayer requests. I can only ask for Him to guide me and carry me.
Once again, thank you all for your prayers and kind words. Please continue to pray for us over these next few weeks as Rebecca goes through hormone therapy. Please pray that we will welcome God’s will.
God Bless you all.
Rebecca is now 10 months old. She is having no purposeful movement as a result of her brain injury and we were told a few weeks ago at the neurology appointment that her beautiful blue eyes are blind. Although she responds to light she has cortical blindness. Her seizures and spasms are still constant, but the medicine numbs her response. We have changed her medicine numerous times, but she is now on Topamax, Clonzopam, Depakote, ammoxicillin and Previcid. Because the seizures and spasms are still present, even on these meds, our neurologist has suggested that we try hormone therapy. This will not heal her, because her injury is permanent and severe; however, it may ease her constant pain. During this treatment she can develop ulcers and her immune system will be greatly compromised. So please pray for her comfort and health and that we will have the strength to make it through this next round of searching for her comfort.
Susan and I are not really sure why this is happening. It is deeply painful to hold a child that is seizing because you know that it is painful, but you cannot help. When I read or talked to her while she was in Susan's womb, she always responded to my voice. She would roll around in mama's tummy when her sisters would read to her. Now, she cannot respond and we don't know if she can even perceive that we are here. There’s nothing you can do to stop the neurons from short circuiting around the dead cells in her brain, the unwanted contractions of muscles and the failure of other muscles to rest or respond. It is also painful, because Rebecca does not smile, laugh, giggle, coo, reach for you or do anything else that her sisters did when they were young. She most likely will never do these things. But I know one day I will walk with her in heaven and I will not be amazed that she is healed, because we will be in the presence of Christ and He will have our full attention. God is good and His love is everlasting. I worry now less about where my girls will go to college; I worry more about where they will spend eternity. Where will you be in 500 years? Take a minute and reflect, what are you doing today that will count 500 years from now.
In the last ten months, I have read just about every textbook on pediatric neurology, obstetrics and gynecology, infant brain injuries, nursing text and manuals, fetal heart monitors, placentas and seizure disorders. I thank all my friends who are nurses and doctors who have helped us understand what happened to Rebecca during birth. She was perfect in the womb. If you’re about to have a baby, I urge you to read about the birthing process and study it. Do not be afraid to ask questions and Dads you must thoroughly interview the person who will take care of your wife. Also, there really is no protocol for resuscitation of a baby, one doctor told us that he would not have resuscitated Rebecca after five minutes without a heartbeat; Rebecca did not have a heartbeat until fifteen minutes after delivery yet resuscitation continued. The doctor won’t ask you about your preference, you must tell them. Most want to see if they can save a life, not if they should save a life. I have not found a neurologists yet that would tell me that Rebecca would have a good outcome with a 0 Apgar score at 10+ minutes. Susan had a peace when Rebecca was delivered, she knew Rebecca was dead, and was content with her being in heaven. Even though she has a doctorate in child psychology and understood severe brain injuries, she was not asked what her wishes were for Rebecca at 3 minutes, 5 minutes, 7 minutes, 10 minutes, 12 minutes or 15 minutes. So, please take a minute to talk to your OB about the worst-case scenario and educate yourself on their protocols. Any uneasiness in discussing this before hand, pales in comparison to the pain of living with a decision made without your input and according to a protocol established by people who don’t believe in heaven or hell.
If you are short on time and don’t have an OB, call a labor and delivery nurse and ask them who their OB is. If you ask for a suggestion of a good OB, they will usually tell you someone that they are associated with. So always ask them, “Who is your OB?” It is amazing how the answer will change when you change the questions asked.
Also, video the process. When I was growing up, I loved to hear my mom and dad talk about the day I was born. They talked about not knowing if I would be a boy or girl and how the swinging doors almost hit dad. So with my girls, I always placed a video camera in the room on a shelf and let it run, just so they would have an unedited memory of their birth.
I did not know until a few weeks after Rebecca was born that Susan was so close to death- she lost so much blood that she could have passed away. I thank God each day that Susan is still here; by all accounts she should have died. I shudder to think what our family would be like without Susan. It is a blessing and a miracle from God that she is alive.
I also wanted to post this picture. I snapped it last night when Susan was not aware. Most of the pictures that we have are posed for, so this is a picture of our daily life. Susan feeds Rebecca and this takes quite sometime, because Rebecca’s seizures disrupt feedings; however, she is still able to take a bottle. Rebecca is not asleep; she just has no control over her muscles. So she is either limp or experiences random contractions of different muscle groups. Daily life is horrible in a situation like this. Luckily, God gives us enough anesthetic to numb the pain, but no so much that we cannot experience suffering and draw closer to Him. He is faithful to his promise to transform us if we are willing to seek Him; however, conforming to the sadness in this world is a daily struggle.
Rebecca’s head circumference has not changed in several months. This is a major concern because it means the brain was so damaged that it has stopped growing; this is common in babies who go without oxygen for longer periods of time. Also, she has certain muscle groups that stay contracted constantly, so the complimentary muscle groups do not flex and therefore don’t grow. I did not comprehend the severity of this until we were at Children’s Medical Center in Dallas last year. Our doctor asked if we were having trouble changing her diaper because of her muscle contractions in her legs. I told her that we could massage her legs and she would eventually relax so that we could change her diaper and wipe her. Then she said we should always take the time during a diaper change to perform a few basic physical therapy steps with legs and hips. I gave a puzzled look and she said, “This will make it easier when you are changing her diapers when she is six or seven, sometimes the contractions make it to where you cannot open the hips to change the diaper and that can be problematic.” I am glad God was with me that day. It was His strength that kept me from falling to the ground and weeping. After all we had been through, I thought nothing could surprise me, but this did. This statement seemed so matter of fact to the doctor. It had not been revealed to me that she would never stop using diapers. I knew she was going to miss out on a lot of things, but I didn’t realize that she would not advance at all. In responding to the overwhelming crisis, I had really not looked that far down the road. Susan, because of her occupation had known for a longtime what the long term outcome would be. This was a long, quiet ride home.
Good news: God is still in control.
1. Susan had to resign from her job as Associate Professor at LSU Health Science Center. I asked her to pray about it and it was hard, but she decided to resign and give up her position so she could continue to be with Rebecca full time. So, we were going to eventually lose our health insurance. My concern was health insurance for Rebecca, as I could not find anyone to insure our family. A few days after she resigned, I received a call that a Judgeship was opening at the workers’ compensation court. I applied and was hired! The insurance is with the same company that Susan had at LSU! Lesson: Turn it over to God, take a step in faith and He will provide.
2. I was working two jobs and Susan was taking care of Rebecca around the clock. This was wearing her out mentally and physically and we had no time to share with each other or Katherine and Elizabeth. I wanted to help her get through this, so several months ago I started calling around. I called several nurse staffing places and could not find anyone to return a call to even offer a few hours of help during the day giving medicine or letting Susan rest while I was at work. Back in July, God placed a man in our hospital room one day who came to comfort us and told us a story of his grandson and a special nanny who was taking care of him. Months later, I bought a paper (I always read it online.) I began reading and noticed a child had passed away. It was the man’s grandson. I prayed about it and asked Susan to call him to inquire about the nanny. God put it on my heart to have her call, even though it was awkward. He immediately called back and said that he had been hoping for her to find a good job with a good family because she has been such a blessing to his family. He remembered visiting with us and referred her to us. So she came by and introduced herself. She has over thirty years experience working with terminal and special needs children. She lives within a mile of our house. She loves Rebecca and has only been with us a week, but she is an angel from heaven. Lesson: God is not bound by time, He sees your whole life at the same time and He will put people in your path to bless you when it is most beneficial to you. Also, obeying God usually makes you feel awkward, or different from the world, so if it seems awkward, then God is more than likely a part of it.
3. We talk to God more about things that really matter. For some reason, I cannot go to God anymore with certain prayer requests. I can only ask for Him to guide me and carry me.
Once again, thank you all for your prayers and kind words. Please continue to pray for us over these next few weeks as Rebecca goes through hormone therapy. Please pray that we will welcome God’s will.
God Bless you all.
Monday, December 17, 2007
Award Winning Poem
Congratulations to Katherine for winning the Young Author's Contest for her grade two years in a row. Last year it was a story about spending a week with Jesus. This year, a Christmas poem that I would like to share with all of you.
Merry people
Exciting carolers
Really special holiday
Ready to open presents
You better go to sleep on Christmas Eve!
Christ Jesus was born.
Ho Ho Ho!
Rudolph
Interesting gifts
Snowflakes falling
Trust in God
Many surprises
A Secret Santa
Saint Nick
Katherine promises her daddy that it is a poem even if it does not rhyme.
Merry people
Exciting carolers
Really special holiday
Ready to open presents
You better go to sleep on Christmas Eve!
Christ Jesus was born.
Ho Ho Ho!
Rudolph
Interesting gifts
Snowflakes falling
Trust in God
Many surprises
A Secret Santa
Saint Nick
Katherine promises her daddy that it is a poem even if it does not rhyme.
Friday, December 14, 2007
Naughty or Nice List
As the cousins gathered at their Nana & Pop's house for a Christmas card picture, a knock sounded at the door. The sarcastic children declare, "It's Santa Claus." Much to their surprise it was Santa Claus himself! He came through the front door for fear of a fire and had many stories to entertain about his reindeer and Mrs. Claus. However, the most interesting stories were those he had for each of the fair cousins. He seemed to know each of them by name, as well as their good - and bad - deeds! It was all laughter as he called them each out and declared their areas for improvement. It seemed to have occurred in a flash when Mrs. Claus called the house to summon him home and reprimand him for his lateness. After he left, the children gathered for one more group picture, and they each had the strangest expression on their face (except Rebecca, who slept through it all). These children were not excited, but scared to death. How on earth could they ever make the good list if he really did know them?
This calls to question a thought for us all as we celebrate the birth of Christ Jesus. Let us all take the time to reflect that we will have to answer one day for all we have done. I expect not one of us will be blameless. The birth of Jesus Christ led to the sacrifice of the one without fault, for you. It is only through him that we will ever make the nice list. Take a minute to reflect, for there is much more at stake than a present on Christmas morn. There is eternity to consider. What will your response be when your imperfections are brought to judgement?
All I Want for Christmas
I never have been one to receive gifts well. My responses are always so awkward that the person giving the gift has surely regretted it. Perhaps this is because I do not typically want tangible gifts. The same is true now more than ever. There is nothing that I want that someone can purchase or make. This year, I can honestly say there is only one thing that I want for Christmas. This is a gift that only my Heavenly Father can grant. I want my Rebecca to be healed. I recognize that this is a loaded request. I want her to stop hurting and suffering. I want to see her smile. Perhaps I have not updated the website because I want to share the positive with you. However, there has been no change for Rebecca, which actually makes it worse. She is almost 8 months old and has lost her ability to track objects with her eyes and her ability to look at others. We have yet to see any purposeful movement for her. Her brain is not growing, and her seizures and spasms are not stopping. A recent increase in medication is hoped to improve her condition, but it has not as of yet. I expect we will be adding yet another medication for her in January to help ease her suffering and to hopefully stop her seizures. Her doctors give us the expectation for her to function somewhere within the severe to profound range of retardation. Translation, she may never do many simple things such as sit up. For example, right now her "mental age" is that of less than a one month old baby, so she is not expect to do anything that a 1 month old can do. This is why she appears so young to most who see her. I paint a bleak picture intentionally. She was dead for a minimum of 15 minutes, much likely for a lot longer in utero. The doctors expect very little from her. It is a miracle that she is able to eat, and she has been able to eat baby food as well as take a bottle. Everything she does is a direct result of God's grace. Anything she is ever able to do will continue to be a direct result of God's grace. Please continue to pray for this mother's deepest wish. For God is not confined by the parameters of this physical world and all things are possible through Him. May you each feel the full weight of your blessings this Christmas season.
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