Tuesday, January 18, 2011
Monday, January 17, 2011
Sunday, January 16, 2011
Showing off
I consider everything Lilah does an accomplishment. Every growth, change, milestone...everything I consider a mountain she has overcome.
I look back at the baby who was scared to roll over at 5 months old. I think about how far she has come and how MUCH she is doing.
Lately, Lilah has been doing a "tall kneel" by pushing up through her legs and doing this "hands-free." Lilah will get very excited and start dancing and this is what she does:
Look at that STRONG body. Look at that torso. Look at that form. Look at the determination. Look at how FAR she has come.
To me, THIS is success. I celebrate this as a HUGE accomplishment.
and look at how BIG she has gotten...(thank God Aaron carried her in the neurologists office. They weighed her at 35.5lbs)
I look back at the baby who was scared to roll over at 5 months old. I think about how far she has come and how MUCH she is doing.
Lately, Lilah has been doing a "tall kneel" by pushing up through her legs and doing this "hands-free." Lilah will get very excited and start dancing and this is what she does:
Look at that STRONG body. Look at that torso. Look at that form. Look at the determination. Look at how FAR she has come.To me, THIS is success. I celebrate this as a HUGE accomplishment.
and look at how BIG she has gotten...(thank God Aaron carried her in the neurologists office. They weighed her at 35.5lbs)
Saturday, January 15, 2011
I knew it, but hearing it still stinks.
Yesterday, only 3 days after I had surgery to remove cysts, endometriosis, and severe adhesions that had attached both sides of my bowels to my abdomen, we heard the MRI results.
I could barely walk, let alone sit in the chair comfortably, but...I was determined to be there. Aaron carried Lilah, held my hand and we made our way to Dr. Moretz office.
I knew that this was not going to be the results we wanted to hear. I had a very strong gut feeling that we would hear news that would change our course one more time. Not that I was being negative, but I knew. Deep down inside I knew. I have said all along that I feel as if everyone knows something about Lilah, but they won't tell me the truth.
Dr. Moretz said that her brain MRI showed that her white matter didn't all form the right way. It can be "somewhat common" however, because Lilah is so delayed it shows that she is more "globally delayed" or that "R" word that we feared.
I am GRATEFUL I followed my gut and asked for the lumbar spine MRI, because my intuition was correct. Lilah has tethering of her spinal cord. Dr. Moretz said Lilah does not have spina bifida, but the tethering is there. She has referred us to a neurosurgeon. She told us to get several opinions before we decide on surgery.
Surgery. That word alone scares me...but on my child's spine...shakes me to my core.
I didn't hear anything shocking. I heard what I anticipated to hear. Aaron didn't say much. He got very quiet. Poor guy had already been under so much stress with me just having surgery and now he was hearing that once again his baby was even more different.
The ride home was so quiet. The radio was on, but it seemed as though we were riding in silence. It was deafening. At some point I wanted to snap my fingers and the entire day not have happened.
This is how I feel: This course with Lilah never stays the same. There has not been a "here, this is your child, this is what she has, this is how you deal with it." There is a constant change. There is a constant up and down. The road never stays the same. We keep getting different and new information. THIS is exhausting...emotionally and physically. When can we get ALL the information on Lilah, know what we are dealing with and then navigate our path. Why does everything have to change SO much?
I told Dr. Moretz that I was fed up. I told her that we have done all these tests, and have no answers. I told her that we have done the geneticist, the blood tests, Aaron and I's blood, etc, etc. We have tried to get answers on Lilah, but keep getting nothing. She told me she would call the geneticist and see what the hold up was.
At 6:30pm last night Dr. Moretz called. She told Aaron that she was sorry that we haven't gotten any answers, but she is determined to take matters into her own hands and get results. THAT was a big shocker, but was also a HUGE relief. FINALLY, someone with MD at the end of their name wants to help me find answers about my baby.
I woke up this morning in a LOT of pain, followed by a HUGE realization and sadness. I began to cry and get sad, "WHY? WHY? WHY?" My mind began to race all over the place. Why Lilah? Why does she have to have one MORE thing? Why do we keep getting half answers? Why does this hurt so bad? I tried to crawl out of bed. Mind you, I have a swollen belly and I am carrying around an extra 15lbs of water weight and swelling.
I began to be very fearful. I allowed Satan to enter my mind and take over. I allowed him to let me go to that place of hopelessness, fear, and sadness. I allowed Satan to let me be mad at God. But, that is OK. God isn't mad at me that I am mad at Him. God isn't mad that I am questioning. God won't stop loving me or Lilah, even when I am fearful and sad. I allowed myself a long cry and then I felt HIM say, "get up."
I don't know why God has chosen Lilah for this path. I don't know why God trusted her to me, but I do know that I will not give up and Satan will not win. I will love Lilah and be the best Mama I can, no matter the circumstances.
So, even though I feel like death, and look like crud, I will do what I know is the best thing. I will be at SCC tonight and reconnect myself with God. I don't understand why He has allowed all of this to happen to me, Lilah, to our family, but I love Him for giving me Lilah.....just as she is. So,I will be there tonight to praise Him, even when I do not understand.
I could barely walk, let alone sit in the chair comfortably, but...I was determined to be there. Aaron carried Lilah, held my hand and we made our way to Dr. Moretz office.
I knew that this was not going to be the results we wanted to hear. I had a very strong gut feeling that we would hear news that would change our course one more time. Not that I was being negative, but I knew. Deep down inside I knew. I have said all along that I feel as if everyone knows something about Lilah, but they won't tell me the truth.
Dr. Moretz said that her brain MRI showed that her white matter didn't all form the right way. It can be "somewhat common" however, because Lilah is so delayed it shows that she is more "globally delayed" or that "R" word that we feared.
I am GRATEFUL I followed my gut and asked for the lumbar spine MRI, because my intuition was correct. Lilah has tethering of her spinal cord. Dr. Moretz said Lilah does not have spina bifida, but the tethering is there. She has referred us to a neurosurgeon. She told us to get several opinions before we decide on surgery.
Surgery. That word alone scares me...but on my child's spine...shakes me to my core.
I didn't hear anything shocking. I heard what I anticipated to hear. Aaron didn't say much. He got very quiet. Poor guy had already been under so much stress with me just having surgery and now he was hearing that once again his baby was even more different.
The ride home was so quiet. The radio was on, but it seemed as though we were riding in silence. It was deafening. At some point I wanted to snap my fingers and the entire day not have happened.
This is how I feel: This course with Lilah never stays the same. There has not been a "here, this is your child, this is what she has, this is how you deal with it." There is a constant change. There is a constant up and down. The road never stays the same. We keep getting different and new information. THIS is exhausting...emotionally and physically. When can we get ALL the information on Lilah, know what we are dealing with and then navigate our path. Why does everything have to change SO much?
I told Dr. Moretz that I was fed up. I told her that we have done all these tests, and have no answers. I told her that we have done the geneticist, the blood tests, Aaron and I's blood, etc, etc. We have tried to get answers on Lilah, but keep getting nothing. She told me she would call the geneticist and see what the hold up was.
At 6:30pm last night Dr. Moretz called. She told Aaron that she was sorry that we haven't gotten any answers, but she is determined to take matters into her own hands and get results. THAT was a big shocker, but was also a HUGE relief. FINALLY, someone with MD at the end of their name wants to help me find answers about my baby.
I woke up this morning in a LOT of pain, followed by a HUGE realization and sadness. I began to cry and get sad, "WHY? WHY? WHY?" My mind began to race all over the place. Why Lilah? Why does she have to have one MORE thing? Why do we keep getting half answers? Why does this hurt so bad? I tried to crawl out of bed. Mind you, I have a swollen belly and I am carrying around an extra 15lbs of water weight and swelling.
I began to be very fearful. I allowed Satan to enter my mind and take over. I allowed him to let me go to that place of hopelessness, fear, and sadness. I allowed Satan to let me be mad at God. But, that is OK. God isn't mad at me that I am mad at Him. God isn't mad that I am questioning. God won't stop loving me or Lilah, even when I am fearful and sad. I allowed myself a long cry and then I felt HIM say, "get up."
I don't know why God has chosen Lilah for this path. I don't know why God trusted her to me, but I do know that I will not give up and Satan will not win. I will love Lilah and be the best Mama I can, no matter the circumstances.
So, even though I feel like death, and look like crud, I will do what I know is the best thing. I will be at SCC tonight and reconnect myself with God. I don't understand why He has allowed all of this to happen to me, Lilah, to our family, but I love Him for giving me Lilah.....just as she is. So,I will be there tonight to praise Him, even when I do not understand.
Friday, January 7, 2011
Things we do during treatments
Because Lilah's tube fell out(while she was shaking her head "No" repetitively during the nurses trying to find her veins(and blew 4)) I have started her breathing treatment regime. Trying to keep her healthy!
I love that she chats so much in the morning. She gets that from her Mama!
I love that she chats so much in the morning. She gets that from her Mama!
As iron sharpens iron
The title of this blog post comes from Proverbs 27:17 "As iron sharpens iron, so one person sharpens another"
Some days this journey feels SO lonely. I can stand in a room with people all around me and still feel like I am the ONLY person on earth that is in this place. What I mean by that is this...there are no books, no directions, no plans, no "this is what you should do" when you have a child with special needs. Parenting alone is difficult. Parenting a special needs child takes more than you can imagine. Finding the strength, courage, will, determination, and FIGHT to navigate the roads of this journey are some times filled with uncertainty. Constant questions in your head...
"Is this Doctor right for her?"
"Why did that therapist do that?"
" Will this help her in the long run?"
"Am I putting her through so much pain during tests?"
" Should I stop what I am doing?"
"should I do MORE?"
"Should I fight harder, beg for more and push her until she gets "where" she needs to be?"
"Do I allow her to be a kid and stop or limit therapies, tests, procedures, etc?"
"What about......"
And the list goes on and on and on...EVERYDAY!
There is never a break or a "YES! This is it. THIS is the right thing for Lilah." I am the type of person who is always thinking and researching and wondering if I am doing "enough" to help my child.
While writing this blog I have met some wonderful "friends", made connections, learned from others, but I have also gotten some comments here that have been PAINFUL, hurtful and mean(even after changing the title of the "comments" to "generous words of hope"). But, nothing in this journey is easy, and when I open my heart for the world to see...someone will not like it. Many probably dislike it a lot because I speak the truth. I quote scripture. I believe in God. I believe that Jesus is my saviour. Then there are those who write me emails that are little words straight from God to let me know HE is proud of me for telling the truth during my journey with Lilah. Telling the truth that I have amazing days, with some very painful moments.
I received an email the other day that I would like to share:
Hi Katie,
I've written you before. My daughter is 4 and totally blind. I came across this quote a while back and have had it on my fridge ever since. It has helped me through so many hard times.
"I am grateful for the progress, trying to learn to see God in the pain, and hopeful that I can become who God needs me to be for my family through the days ahead. But, for now I relish in the progress of today...even if there was pain involved."
Thank you for being so open with your feelings on your blog. I don't know how many tears I've cried with you, for you, or for myself and my Addison while reading. You have helped me to not feel alone in this journey we are taking. THANK YOU!!!!!
Kathy
See, I needed those words. I opened the email, again, when I was having a hard moment. I am having surgery Tuesday and I am running around trying to find help, sitters, drop-offs, pick-ups, figuring out what needs to be done before then, etc. THEN...Lilah's neurologist's office called and instead of giving us the results, of the MRI, over the phone( as she did last year), the nurse told us that the Dr. wants to review the results with us in her office. FEAR immediately took over. I was in the middle of helping Alex, my oldest, with her homework. I put on the brave face and tried to help her and then.....the tears began to fall down my face. Nothing will change Lilah. Not a result. Not an evaluation. Not anything. She is the sweetest child....EVER! But, I am human. I am her mother. I worry. I see how this world views children like her. I know that God sent her to me to help change the world, and I trust Him, but the path and the pain...is sometimes very hard. I feel as if I can never have the truth about Lilah be for sure. First it was "she's blind", then it was "there is some sight" then it was "she has more than a VI" then it was "she's really delayed" now there might be something wrong with her brain? I would like the roller coaster to not have such HUGE dips. I can handle the ups and downs and twists and turns, but such HIGHS and LOWS. Sometimes I feel as if I am going to fall off. No consistency at all....and then, THIS is where my FAITH takes over.....just when I am at my weakest and I cry and shout and scream out of pain...God whispers in my ear, "I am here, Katie. You are not alone. I am not watching in the bleachers. I am carrying you and Lilah. I will never leave you. I love you." And THAT is when PEACE and calm overtakes me.
To Kathy,
I cannot thank YOU enough for writing those words. To know that someone out there feels the same way is priceless. To know that my transparency is helping someone else means I am honoring God. Thank you for hearing HIS call and writing me and speaking HIS words to me. I am here for you!
Katie
Some days this journey feels SO lonely. I can stand in a room with people all around me and still feel like I am the ONLY person on earth that is in this place. What I mean by that is this...there are no books, no directions, no plans, no "this is what you should do" when you have a child with special needs. Parenting alone is difficult. Parenting a special needs child takes more than you can imagine. Finding the strength, courage, will, determination, and FIGHT to navigate the roads of this journey are some times filled with uncertainty. Constant questions in your head...
"Is this Doctor right for her?"
"Why did that therapist do that?"
" Will this help her in the long run?"
"Am I putting her through so much pain during tests?"
" Should I stop what I am doing?"
"should I do MORE?"
"Should I fight harder, beg for more and push her until she gets "where" she needs to be?"
"Do I allow her to be a kid and stop or limit therapies, tests, procedures, etc?"
"What about......"
And the list goes on and on and on...EVERYDAY!
There is never a break or a "YES! This is it. THIS is the right thing for Lilah." I am the type of person who is always thinking and researching and wondering if I am doing "enough" to help my child.
While writing this blog I have met some wonderful "friends", made connections, learned from others, but I have also gotten some comments here that have been PAINFUL, hurtful and mean(even after changing the title of the "comments" to "generous words of hope"). But, nothing in this journey is easy, and when I open my heart for the world to see...someone will not like it. Many probably dislike it a lot because I speak the truth. I quote scripture. I believe in God. I believe that Jesus is my saviour. Then there are those who write me emails that are little words straight from God to let me know HE is proud of me for telling the truth during my journey with Lilah. Telling the truth that I have amazing days, with some very painful moments.
I received an email the other day that I would like to share:
Hi Katie,
I've written you before. My daughter is 4 and totally blind. I came across this quote a while back and have had it on my fridge ever since. It has helped me through so many hard times.
"I am grateful for the progress, trying to learn to see God in the pain, and hopeful that I can become who God needs me to be for my family through the days ahead. But, for now I relish in the progress of today...even if there was pain involved."
Thank you for being so open with your feelings on your blog. I don't know how many tears I've cried with you, for you, or for myself and my Addison while reading. You have helped me to not feel alone in this journey we are taking. THANK YOU!!!!!
Kathy
WOW.......
See, I needed those words. I opened the email, again, when I was having a hard moment. I am having surgery Tuesday and I am running around trying to find help, sitters, drop-offs, pick-ups, figuring out what needs to be done before then, etc. THEN...Lilah's neurologist's office called and instead of giving us the results, of the MRI, over the phone( as she did last year), the nurse told us that the Dr. wants to review the results with us in her office. FEAR immediately took over. I was in the middle of helping Alex, my oldest, with her homework. I put on the brave face and tried to help her and then.....the tears began to fall down my face. Nothing will change Lilah. Not a result. Not an evaluation. Not anything. She is the sweetest child....EVER! But, I am human. I am her mother. I worry. I see how this world views children like her. I know that God sent her to me to help change the world, and I trust Him, but the path and the pain...is sometimes very hard. I feel as if I can never have the truth about Lilah be for sure. First it was "she's blind", then it was "there is some sight" then it was "she has more than a VI" then it was "she's really delayed" now there might be something wrong with her brain? I would like the roller coaster to not have such HUGE dips. I can handle the ups and downs and twists and turns, but such HIGHS and LOWS. Sometimes I feel as if I am going to fall off. No consistency at all....and then, THIS is where my FAITH takes over.....just when I am at my weakest and I cry and shout and scream out of pain...God whispers in my ear, "I am here, Katie. You are not alone. I am not watching in the bleachers. I am carrying you and Lilah. I will never leave you. I love you." And THAT is when PEACE and calm overtakes me.
To Kathy,
I cannot thank YOU enough for writing those words. To know that someone out there feels the same way is priceless. To know that my transparency is helping someone else means I am honoring God. Thank you for hearing HIS call and writing me and speaking HIS words to me. I am here for you!
Katie
Thursday, January 6, 2011
Sweet Sounds from Lilah!
My sweet Lilah is trying SO hard to find ways to communicate with me.
I just adore her!
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