Tonight I was putting Sophi to bed. We prayed (including her cousin Caleb's diaper rash.. which she stated "God heal Caweb's butts"... anyway..) when we were done I said do you know who we pray too?
She responded "God and Jesus"
OK... then I told her that Jesus was God's son.
She said that Mary was Jesus' mommy. Yep.
Then she said that God needed a mommy.
I told her in the best possible way to explain to a two year old... "God was here first and he made all of us."
She contemplated my words for a moment and responded, "Cinderella must be God's mommy because she is so awesome to make God."
The conversation ended soon after.. because Cinderella must be God's mommy.
Saturday, May 31, 2008
Friday, May 30, 2008
loves riding not swimming
*Sophia riding her pony 'Amazing Grace' yesterday afternoon.
Yesterday was such a great day. Sophi was thrilled to ride horses and she was so happy when she came home last night. It was nice to have some good days. Wednesday and Thursday were pretty great days with her. It was nice to have a break from a strand of bad days; the last week or so was pretty difficult. I was talking to our pastor on the phone yesterday and joked (in a I really mean this kind of way) that I was afraid it was the calm before the storm... today Sophi was having another great morning. We went and saw her Great Grandma (had a great visit) before swim lessons and Aunt Lana came to watch Sophia and Troy in there lesson. Sophi was really excited to show "Aunt Lanny" how she swims (she normally doesn't like swim lessons, but with all the water around it is important that she learn). They were doing some new things with her today and she was crying and being her normal self. She got to the side and asked to go to the bathroom... I thought it was her attempt to get out of the pool, but not wanting to risk an accident I took her into the bathroom. (Good thing Aunt Lana did come, Troy was still in the pool with his teacher- thanks for being there Lana!) She was sitting on the potty crying for me to not leave and she froze up, eyes fixated to the left, she had a short "absence seizure" few seconds went by and I just held her up (she was on the potty remember) she came too and started shivering, then blah- puked up some water... I ran to grab her towel and covered her up. She is fine now, sleeping like a little angel in her bed. It is just so frustrating, she wanted to show her Aunt how good she was. I am so proud of her. I just wish her body could tolerate stress better than it does. It breaks my heart for her.. she didn't even act like she realized anything happened (I am sure she just can't explain it). She just wanted to be held and said she was tired. Well, just another 'episode' to share with the neurologist. People were asking me if she was ok, I told them she was fine.. I didn't want to publicize what happened, but I wanted them to stop asking, but I was glad they cared.. another roller coaster. My sweet baby; she is fine and I am grateful for that, that's all that matters in the end. I am so thankful for the fun time she had riding the horses; that's something we can talk about when she gets up.. I am looking forward to that conversation with her.
Thursday, May 29, 2008
About the little brother
Troy, my rock, he is my sweet boy. I adore him. I am so thankful that he is my son. I don't tell many people this story but I want to share because I think Troy's life is testimony of God's plan and a story of strengthened faith.
Tony and I decided we wanted to try for another baby a little before Sophia's first birthday. At that point she had only had about four seizures and was still not yet diagnosed epileptic. At that point we hadn't even been sent to a specialist. Anywho, 8 months later, I found out I was pregnant. It's a time a mommy never forgets; I was actually on the phone and took a test which I figured was negative (I had taken a test every month and they had been negative for 8 months) not tonight!! I was trilled- We were so excited. A short lived excitment- later that night Sophi woke up about 2am crying, I went to her room and she was burning up. She had her 6th febrile seizure that night. It lasted a long time, she stopped breathing, she looked lifeless... Tony thought she was brain dead. She wasn't waking up. It took about 35 minutes before she was responsive; finally we were sent to a specialist. Newly pregnant and my baby was having MRIs, EEGs, blood work, all kinds of tests... seemed like test after test.. and more and more seizures. They mentioned a possible tumor in the inner most left portion of the brain, that consumed my thoughts until that test came negative. She a big seizure every 3-6 weeks for the first 7 months I was pregnant with Troy. This was a test of my faith. Why would God give me this; we didn't know if Sophi had a brain tumor or what, as parents you can't help but think the worst and I was pregnant. There were days that I didn't think I'd be able to care for another child. I questioned our decision to have another child. I questioned God for answering my prayers. I even asked God to take him away. I didn't think I would be able to care for him. I was afraid their would be something wrong with him. I was consumed with anxiety and I was ashamed to share with anyone. I was so destraught and full of guilt and saddness. I reached a point that I had no choice but to put all of my faith in Him, that He had a plan and His plan would be carried though despite what I wanted. Troy's life was in His hands. I wasn't in control and my anxieties were less, everyday that went by I prayed... I prayed for Sophi to be healthy, for Troy to be healthy, for happiness, for joy in my pregnancy, for God to heal my unfaithful heart, for Him to take my guilt. I was so guilty that for a moment in time I didn't want him, getting over that guilt and accepting that I am human and those are human thoughts was the hardest challenge. I love that boy more than life, it still gives me a lump in my throat to think there was a time I prayed for God to give him a different mommy. I didn't think I could be good enough for him. I didn't think I could give him the attention he deserved. I am so thankful that God loves us, even when we are blind.
When I went into labor with Troy I was shocked. He wasn't due for three and a half weeks. My mom had just gone out of town. Sophia and Tony had the stomach flu and Troy decided he was ready to come. Great timing son! While I was in the hospital all I could do was pray for a safe delivery. My unanswered prayers were haunting me... I didn't want God to answer those prayers. I wanted my baby. I wanted to hold him. When he was born he was gray, he was choking, the cord was around his neck, I thought my selfish prayer was happening. They took him away. Poor Tony, was so sick, he slept while I prayed and cried and prayed, four hours later they finally brought me my baby. He was perfect. He is perfect. Everything about him is perfect. I am so grateful for unanswered prayers. I am grateful for a Heavenly Father who has a plan for our lives, for a faithful Father, for a Father who loves us despite our selfishness, for a Teacher, a patient, faithful Teacher.
My son, he is my joy. He is a testimony. His life. He will do great things. He already has.
Tony and I decided we wanted to try for another baby a little before Sophia's first birthday. At that point she had only had about four seizures and was still not yet diagnosed epileptic. At that point we hadn't even been sent to a specialist. Anywho, 8 months later, I found out I was pregnant. It's a time a mommy never forgets; I was actually on the phone and took a test which I figured was negative (I had taken a test every month and they had been negative for 8 months) not tonight!! I was trilled- We were so excited. A short lived excitment- later that night Sophi woke up about 2am crying, I went to her room and she was burning up. She had her 6th febrile seizure that night. It lasted a long time, she stopped breathing, she looked lifeless... Tony thought she was brain dead. She wasn't waking up. It took about 35 minutes before she was responsive; finally we were sent to a specialist. Newly pregnant and my baby was having MRIs, EEGs, blood work, all kinds of tests... seemed like test after test.. and more and more seizures. They mentioned a possible tumor in the inner most left portion of the brain, that consumed my thoughts until that test came negative. She a big seizure every 3-6 weeks for the first 7 months I was pregnant with Troy. This was a test of my faith. Why would God give me this; we didn't know if Sophi had a brain tumor or what, as parents you can't help but think the worst and I was pregnant. There were days that I didn't think I'd be able to care for another child. I questioned our decision to have another child. I questioned God for answering my prayers. I even asked God to take him away. I didn't think I would be able to care for him. I was afraid their would be something wrong with him. I was consumed with anxiety and I was ashamed to share with anyone. I was so destraught and full of guilt and saddness. I reached a point that I had no choice but to put all of my faith in Him, that He had a plan and His plan would be carried though despite what I wanted. Troy's life was in His hands. I wasn't in control and my anxieties were less, everyday that went by I prayed... I prayed for Sophi to be healthy, for Troy to be healthy, for happiness, for joy in my pregnancy, for God to heal my unfaithful heart, for Him to take my guilt. I was so guilty that for a moment in time I didn't want him, getting over that guilt and accepting that I am human and those are human thoughts was the hardest challenge. I love that boy more than life, it still gives me a lump in my throat to think there was a time I prayed for God to give him a different mommy. I didn't think I could be good enough for him. I didn't think I could give him the attention he deserved. I am so thankful that God loves us, even when we are blind.
When I went into labor with Troy I was shocked. He wasn't due for three and a half weeks. My mom had just gone out of town. Sophia and Tony had the stomach flu and Troy decided he was ready to come. Great timing son! While I was in the hospital all I could do was pray for a safe delivery. My unanswered prayers were haunting me... I didn't want God to answer those prayers. I wanted my baby. I wanted to hold him. When he was born he was gray, he was choking, the cord was around his neck, I thought my selfish prayer was happening. They took him away. Poor Tony, was so sick, he slept while I prayed and cried and prayed, four hours later they finally brought me my baby. He was perfect. He is perfect. Everything about him is perfect. I am so grateful for unanswered prayers. I am grateful for a Heavenly Father who has a plan for our lives, for a faithful Father, for a Father who loves us despite our selfishness, for a Teacher, a patient, faithful Teacher.
My son, he is my joy. He is a testimony. His life. He will do great things. He already has.
Wednesday, May 28, 2008
a shining light
I wrote this as a journal entry on April 2, 2008- I think it is important and well worth sharing with anyone who sees this.
My sweet Sophia. Her outgoing personality and health issues have created opportunity after opportunity for her to be a shining light to others. When we go to the neurologist office their are children there with severe disabilities. Sophia's outgoing spirit ables her to go and talk with these children. Most don't know how or what to say to them. She speaks freely without judgement or fear. If they can't communicate verbally, she will go and touch them. Seeing her, not judging and an open heart, she is a testimony to others. She has no fear of difference. She embraces these people and makes it her personal mission in that moment to involve them in her life.
One story really stands out in my mind. Just after her second birthday she had a seizure during the night and off we went to the neurologists office. I was emotional, pregnant, and sad. We got to the office and a young teenage boy was in a wheel chair in the waiting room. His head was arched back, he had saliva running down his chin and a drain coming from the back of his head. I saw him and felt guilty for being so down, thankful that I wasn't that mother but guilty that I felt that way. Guilt- That was the emotion for that particular day. Sophia runs in and plays with the toys, shouts a quick hello to the receptionist and continues playing. I sat quiet and dumbfounded across from the boy and his mother. I didn't know what to say. Sophia walked up to the boy, his eyes followed her, she smiled at him, she touched his leg, and she started telling him about the toys. "There is a blue block over there...a fire truck... do you see it?..." She had no hesitation in her voice. She was thrilled to speak with him, even though he never spoke back. It was like she was having a conversation with him that the rest of us couldn't hear. She was not shaken by his wheelchair or oxygen; she held onto the chair while she spoke with him, asking him if he was comfortable. Then she ran off to play. I caught a glimpse of his mother before we were called in to see the doctor. His mother's solemn face was bright- in no thanks to me, but my two year old baby who showed me how I should have acted. Fearless, comfortable, and caring. she treated that little boy just like any other little boy- and that is exactly how she should have done.
Her outgoing, happy, personality made an impact that day and she was a true example of how we should all act. God blessed her with a beautiful spirit. I love you Sophia Ann.
My sweet Sophia. Her outgoing personality and health issues have created opportunity after opportunity for her to be a shining light to others. When we go to the neurologist office their are children there with severe disabilities. Sophia's outgoing spirit ables her to go and talk with these children. Most don't know how or what to say to them. She speaks freely without judgement or fear. If they can't communicate verbally, she will go and touch them. Seeing her, not judging and an open heart, she is a testimony to others. She has no fear of difference. She embraces these people and makes it her personal mission in that moment to involve them in her life.
One story really stands out in my mind. Just after her second birthday she had a seizure during the night and off we went to the neurologists office. I was emotional, pregnant, and sad. We got to the office and a young teenage boy was in a wheel chair in the waiting room. His head was arched back, he had saliva running down his chin and a drain coming from the back of his head. I saw him and felt guilty for being so down, thankful that I wasn't that mother but guilty that I felt that way. Guilt- That was the emotion for that particular day. Sophia runs in and plays with the toys, shouts a quick hello to the receptionist and continues playing. I sat quiet and dumbfounded across from the boy and his mother. I didn't know what to say. Sophia walked up to the boy, his eyes followed her, she smiled at him, she touched his leg, and she started telling him about the toys. "There is a blue block over there...a fire truck... do you see it?..." She had no hesitation in her voice. She was thrilled to speak with him, even though he never spoke back. It was like she was having a conversation with him that the rest of us couldn't hear. She was not shaken by his wheelchair or oxygen; she held onto the chair while she spoke with him, asking him if he was comfortable. Then she ran off to play. I caught a glimpse of his mother before we were called in to see the doctor. His mother's solemn face was bright- in no thanks to me, but my two year old baby who showed me how I should have acted. Fearless, comfortable, and caring. she treated that little boy just like any other little boy- and that is exactly how she should have done.
Her outgoing, happy, personality made an impact that day and she was a true example of how we should all act. God blessed her with a beautiful spirit. I love you Sophia Ann.
Tuesday, May 27, 2008
Our own cross
About a month or so ago, I was finally ready to accept that this may be our daughter's future- medicines, "break through seizures"(this is what the doctor calls seizures while children are on medication), bad days, mood swings . I guess until this point I thought she would just grow out of having seizures; some children do. (She still could, I don't give up hope, but I did need to accept it) As her seizures kept continuing and we kept learning what her issues were I decided to accept it and face it head on. Until this point I was in the "we are so blessed that this is all we have to deal with" mode. And we are blessed! Something I want to throw out there though is that we all have our own cross to carry. This is Sophi's cross and until she is older I will carry it for her. It may not be a big cross and it could be much heavier but it is our cross. While crying on the phone to my sister in law, Anne Marie (I cry to her lots -she is one of those great people who you feel comfortable crying to) I told her I felt so guilty that I was crying over this when while I was at the neurologist office earlier that day it was my baby walking and talking, she wasn't in a wheelchair, she appeared totally fine. She reminded me that Sophia did belong there, I do have the right to cry, and she said it perfectly when she said "we all have our own cross to carry." She is sometimes so profound in my rantings... I have a darling nephew, Gabriel, Anne Marie and Matt's (the brother in law) son who has ADHD and in that moment she shared with me Gabriel's cross and the daily trials that they have with him. I don't know why I hadn't thought of it that way before... I was blind in my hope and wasn't allowing myself to be sad- it's ok to be sad. No matter the size of your cross in comparison to someone else; it is still your cross and it is still heavy.
Starting at the beginning
Let’s start at the beginning... on September 8, 2005 a beautiful baby girl came into this world and changed our lives.... a statement most parents make about their children. Sophia Ann, 6lbs 10oz a fireball from birth. She was born screaming, raising hell from first breath. She cried for the first 4 months of life. When she wasn’t crying she was sleeping... and she slept like an angel. She was our gift from God. I hoped our home life would be as beautiful as her life, but it wasn’t... you can imagine the shock to first time parents when you have this image of life and it is nothing you imagined, it was hard. Really hard, she cried, and not small newborn cries... these where loud teenage girl like screams. It was a test of our love as man and wife bringing her into the world and caring for her. Not to mention the medical issues that we would experience. We did get through it and we are a loving family, but it was difficult. Sophia loved being outside, she still does. I would put her bouncy seat outside because it seemed the outside was the only place that brought her peace. My mom said it was the heat and fresh air... I think it was the freedom of the outdoors that she loved. She wasn’t confined indoors. Sophia is our free spirit, our wild horse... funny that the horse is her favorite animal. I want you to know her; I want you to know her beauty, her kindness, her joy, and her hurt.
When she was 9 months old she started having seizures. It was a slow progression but she is now 2 and a half. Sophia is epileptic. This isn't an extreme story, she has no brain damage and has continued to develope normally thus far; there is always that possibility that lingers in our minds; but we place her in God's hands and let him protect her from things that we cannot. She takes Trileptal every 12 hours, Clonezapam when she is running a fever; Diastat is given when a seizure lasts more than 4 minutes. The seizures are “partially controlled” with the medication. We can deal with the seizures as they come. It is the side effects of the medicines that are so difficult to deal with; that is the everyday. Five out of seven days she wakes up complaining of a tummy ache. She has good days and bad ones. Sometimes she can be sad, mad, happy, and enraged in a five-minute span. Sometimes she wants to be alone and sometimes she wants a room full of people around. Some mornings she wants us to come get her out of bed and other mornings if we tell her good mornings it sets off a tailspin. I just pray that I pick the right thing to do. Most days I don’t know how to react. I adore her, she is my favorite girl in the world (as I often tell her), but she completely and totally drains me. I wake up tired and I go to sleep tired. She has a 7 month old little brother (who you will here lots more about later) his name is Troy Anthony. Troy is our rock, totally opposite of his sister; he is even-tempered, calm, quiet, and a real angel boy. Not that Sophia isn’t an angel... but calm, even-tempered, quiet... she is not.
Today was an especially difficult morning. As most toddlers have their days, Sophia woke up on the wrong side of the bed. I guess I should have woke her up singing instead of carrying laundry to the wash... one of those choices, I choose wrong. I took her to the potty; she didn’t like her panties, didn’t want to wear socks, and didn’t want to take off her pajama shirt... well, then it begun... whining, crying, she tells me she is sad, that I make her sad, and she wants to spend the day in her room. We got dressed and I put her back to bed. In hopes that some chocolate milk may cheer her up I filled her cup and returned it... I guess she wanted orange juice. Seems like I can’t do anything right this morning. I said a prayer and went to get her brother dressed. We had a busy morning, Sophia had preschool (she goes twice a week), the dog needed to go to the grooming place, and Troy had swim lessons all by 10am. While I was dressing Troy a shrill scream comes from Sophia’s room... I guess Daddy tried to tell her good morning. Did I mention that Troy was laughing and smiling calling me “DADADADAA....” I believe that God blessed us with Troy’s happiness and health. Maybe Sophia will take some pointers from her brother. I gave Troy a bottle and prayed some more before daring to inform Sophia that it was time to go. Two books and thirty minutes later; Sophia, Troy, Tater Tot (the dog) and myself were in the van. It was on this morning that I decided I needed an outlet. Blog number nine hundred and fifty seven, I have done this before... this one I will keep up with though.
I am hoping to be a support for parents who are dealing with epilepsy. I am hoping for support myself. Sophia is really one of the lucky ones, her epilepsy doesn't keep her from living a fairly normal life... we just deal with the bad days when they happen and pray that we have more good ones than bad. My heart goes out to those who have children who are disabled from epilepsy and I am so greatful for the life that we do get to enjoy with our daughter; however, it still isn't easy and we all have a cross to carry- this is our cross. I am also hoping too reach people with children on medications that alter their personality... the sad side of this is I really don’t know my two year old unless she is on medication. There is no option right now to take her off medicine, just to change her to different medicine, really with the same side effects. So, while I struggle -what can she control and when is she out of control... I’d like to meet other mothers who deal with the same issues. I have spoken with mothers of autistic children, children with ADHD, other parents with epileptic children, children who need medication or children with disorders that alter their personalities and behaviors... what do we do!?
Their are plenty of us out there who deal with difficult children and difficult circumstances... with support and prayer we can get through it.
When she was 9 months old she started having seizures. It was a slow progression but she is now 2 and a half. Sophia is epileptic. This isn't an extreme story, she has no brain damage and has continued to develope normally thus far; there is always that possibility that lingers in our minds; but we place her in God's hands and let him protect her from things that we cannot. She takes Trileptal every 12 hours, Clonezapam when she is running a fever; Diastat is given when a seizure lasts more than 4 minutes. The seizures are “partially controlled” with the medication. We can deal with the seizures as they come. It is the side effects of the medicines that are so difficult to deal with; that is the everyday. Five out of seven days she wakes up complaining of a tummy ache. She has good days and bad ones. Sometimes she can be sad, mad, happy, and enraged in a five-minute span. Sometimes she wants to be alone and sometimes she wants a room full of people around. Some mornings she wants us to come get her out of bed and other mornings if we tell her good mornings it sets off a tailspin. I just pray that I pick the right thing to do. Most days I don’t know how to react. I adore her, she is my favorite girl in the world (as I often tell her), but she completely and totally drains me. I wake up tired and I go to sleep tired. She has a 7 month old little brother (who you will here lots more about later) his name is Troy Anthony. Troy is our rock, totally opposite of his sister; he is even-tempered, calm, quiet, and a real angel boy. Not that Sophia isn’t an angel... but calm, even-tempered, quiet... she is not.
Today was an especially difficult morning. As most toddlers have their days, Sophia woke up on the wrong side of the bed. I guess I should have woke her up singing instead of carrying laundry to the wash... one of those choices, I choose wrong. I took her to the potty; she didn’t like her panties, didn’t want to wear socks, and didn’t want to take off her pajama shirt... well, then it begun... whining, crying, she tells me she is sad, that I make her sad, and she wants to spend the day in her room. We got dressed and I put her back to bed. In hopes that some chocolate milk may cheer her up I filled her cup and returned it... I guess she wanted orange juice. Seems like I can’t do anything right this morning. I said a prayer and went to get her brother dressed. We had a busy morning, Sophia had preschool (she goes twice a week), the dog needed to go to the grooming place, and Troy had swim lessons all by 10am. While I was dressing Troy a shrill scream comes from Sophia’s room... I guess Daddy tried to tell her good morning. Did I mention that Troy was laughing and smiling calling me “DADADADAA....” I believe that God blessed us with Troy’s happiness and health. Maybe Sophia will take some pointers from her brother. I gave Troy a bottle and prayed some more before daring to inform Sophia that it was time to go. Two books and thirty minutes later; Sophia, Troy, Tater Tot (the dog) and myself were in the van. It was on this morning that I decided I needed an outlet. Blog number nine hundred and fifty seven, I have done this before... this one I will keep up with though.
I am hoping to be a support for parents who are dealing with epilepsy. I am hoping for support myself. Sophia is really one of the lucky ones, her epilepsy doesn't keep her from living a fairly normal life... we just deal with the bad days when they happen and pray that we have more good ones than bad. My heart goes out to those who have children who are disabled from epilepsy and I am so greatful for the life that we do get to enjoy with our daughter; however, it still isn't easy and we all have a cross to carry- this is our cross. I am also hoping too reach people with children on medications that alter their personality... the sad side of this is I really don’t know my two year old unless she is on medication. There is no option right now to take her off medicine, just to change her to different medicine, really with the same side effects. So, while I struggle -what can she control and when is she out of control... I’d like to meet other mothers who deal with the same issues. I have spoken with mothers of autistic children, children with ADHD, other parents with epileptic children, children who need medication or children with disorders that alter their personalities and behaviors... what do we do!?
Their are plenty of us out there who deal with difficult children and difficult circumstances... with support and prayer we can get through it.
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