I'll be honest, the past few days have been excruciating! My baby girl is in the hospital and really struggling significantly. I'm exhausted physically and emotionally. My heart hurts. I feel helpless because I can't make everything better. I HATE that feeling.
So with lots of time on my hands while in the hospital with my sweet baby girl I have done a lot of thinking. So many times I have heard and even said something like: "You don't realize the blessing of a healthy child till you have one that isn't".
Seriously, what was I thinking? Yes, it is a blessing to have healthy children, but that doesn't mean that those with challenges aren't a blessing. My sweet baby girl has been through so very much, and yet she brings so much joy to those around her. She teaches me things all the time. She very rarely complains about all of the stuff that she has to endure. So often we complain about little things (for me it is drivers who annoy me), and she pushes on through the pain complaining so little about it that most people would never know she has anything wrong with her.
So while my heart aches, and I wish I could take away her pain I'm so grateful for what an amazing gift I have been given in my precious girl!
Friday, March 21, 2014
Thursday, March 13, 2014
Yet another surgery....
We had hoped after the last update that our sweet girl would have a break from surgeries and hospitals. Unfortunately, that is not the case. I'm posting an update here so friends and family can know what is going on and can pray.
Over the last few days we noticed that our youngest wasn't acting quite right. She was having a lot of headaches and was tired and had a few other things that just weren't quite right. Tuesday morning I was snuggling with her and I noticed that she had another fluid filled lump on the back of her neck under her incision line. This means that she has yet another spinal fluid leak. I immediately called the surgeon who worked us in the same day. He scheduled surgery for the very next day and sent her for an MRI. We were getting everything set up for her to have surgery again when his nurse called us to say that after looking at her MRI the surgeon had determined that the surgery he was going to do the next morning was too dangerous. They then scheduled an appointment for today and surgery for Monday.
Today we went and met with the surgeon. It is really hard to condense all that he said. After a lot of discussion and looking through current and past MRI's the surgeon has come to the conclusion that he has to remove her cerebellar tonsils (the bottom of her cerebellum). He said that this section of the brain controls nausea and balance, and that after a few days there are other parts of her brain that will take over these functions so she can return to normal. They will also have to place another drain, but he isn't sure where he is going to place it at this point. She will be in the hospital for 10 - 14 days this time depending on how she does.
Needless to say, thoughts and prayers are greatly appreciated! There is obviously far more to what is going on than what I was able to include in this post, but it should give a general idea of what is going on in our little world.
Over the last few days we noticed that our youngest wasn't acting quite right. She was having a lot of headaches and was tired and had a few other things that just weren't quite right. Tuesday morning I was snuggling with her and I noticed that she had another fluid filled lump on the back of her neck under her incision line. This means that she has yet another spinal fluid leak. I immediately called the surgeon who worked us in the same day. He scheduled surgery for the very next day and sent her for an MRI. We were getting everything set up for her to have surgery again when his nurse called us to say that after looking at her MRI the surgeon had determined that the surgery he was going to do the next morning was too dangerous. They then scheduled an appointment for today and surgery for Monday.
Today we went and met with the surgeon. It is really hard to condense all that he said. After a lot of discussion and looking through current and past MRI's the surgeon has come to the conclusion that he has to remove her cerebellar tonsils (the bottom of her cerebellum). He said that this section of the brain controls nausea and balance, and that after a few days there are other parts of her brain that will take over these functions so she can return to normal. They will also have to place another drain, but he isn't sure where he is going to place it at this point. She will be in the hospital for 10 - 14 days this time depending on how she does.
Needless to say, thoughts and prayers are greatly appreciated! There is obviously far more to what is going on than what I was able to include in this post, but it should give a general idea of what is going on in our little world.
Monday, February 24, 2014
Update
I have been noticeably absent from writing lately. Things here with our sweet little girl have been pretty rough the last several months, and my focus has been on her. I gave lots of updates when we went to National Jewish Hospital in August, but haven't given many since then, so here is the scoop.
In October she underwent stomach surgery (Nissen Fundoplication). This was ultimately to help with her breathing issues. Her reflux had gotten so bad that she was aspirating food particles into her lungs which made fat grow in her lungs and made it hard to breathe.
In November she had to have her 2nd brain surgery (Chiari decompression). She pulled through amazingly well, and we thought we were going to be done for a while at this point. She was sent home from the hospital just before Thanksgiving.
In December we took her to the ER because she had a spinal fluid leak. She ended up in the PICU for several days on IV antibiotics. The incision line healed and we thought the leakage had stopped, so they sent her home. Unfortunately this was not the case. The leakage was just contained inside her body and she started to develop large lumps under the incision site.
In January she had to go back into surgery to repair the leak. It was during this surgery that we were told she has hydrocephalus and pseudotumor cerebri. The surgeon repaired the leak in the dura (sack around the brain) and placed an external lumbar drain and she was in the PICU for 2 weeks. We were again hoping that this would be the end of her struggles for a while, but it was not.
In February I discovered that she was again starting to build up fluid under the incision line. Within 2 days of calling the surgeon's office to let them know my suspicions she was back in surgery to have a vp shunt placed in her head. Now the excess fluid within her head is drained into her abdomen.
We are really hoping that our poor sweet girl can get a break from surgeries and hospitals for a while. We really appreciate everyone's thoughts and prayers for our family! We are hoping we can get back into a "normal" routine soon!
Tuesday, January 28, 2014
For the days you wish God had skin on...
This post is about as real and raw as it gets. I'm not usually quite this open, but I feel like I'm supposed to share this...
I typically think of myself as a pretty joyful and optimistic person, but lately that has been so tough. Our family has walked through some pretty big stuff with our youngest daughter (In the hospital 5 times in the last 6 months and 3 major surgeries during that time). We have walked through lots of tough stuff before, but for some reason I really struggled far greater this time.
My emotions have been raw. I have felt so very down. I told one of my closest friends "I never understood how someone could have so many great family members and friends and still feel so very alone". Never that is until the last few days. I know that emotions aren't a bad thing, and sometimes the amount of exhaustion your body is in plays into these emotions, but I was not prepared to be so depressed. That just isn't me. But the last few days it was...I cried...I wanted to be alone...I wanted to have a magic wand that would make everything all better.
At some point I realized that I had to make a choice. So, my choice was to put on good music, allow myself to cry, allow myself to rest, and to call a friend who I knew would love and encourage me through this. Did these things make it all go away? NO! But I'm not as down as I was before, and I have my focus on better things. This has been really hard because I was always taught that emotions are wrong, and that if you worry or are scared about something that means you aren't trusting in God. As I have grown, and read the Bible for myself, I see these things are simply wrong. Even Jesus wept when Lazarus died (even though He knew what was coming); even Jesus got angry enough to throw over tables; even Jesus called people names (Vipers) when the situation was appropriate. So, if Jesus can experience strong emotions, then so can we.
If you are down and discouraged today maybe some of the things that have helped me will help you too. I put on good music, make a list of all the good things in my life, spend time with those who love me unconditionally (even just on the phone), and do activities that I enjoy. What are things that have helped to encourage you?
I typically think of myself as a pretty joyful and optimistic person, but lately that has been so tough. Our family has walked through some pretty big stuff with our youngest daughter (In the hospital 5 times in the last 6 months and 3 major surgeries during that time). We have walked through lots of tough stuff before, but for some reason I really struggled far greater this time.
My emotions have been raw. I have felt so very down. I told one of my closest friends "I never understood how someone could have so many great family members and friends and still feel so very alone". Never that is until the last few days. I know that emotions aren't a bad thing, and sometimes the amount of exhaustion your body is in plays into these emotions, but I was not prepared to be so depressed. That just isn't me. But the last few days it was...I cried...I wanted to be alone...I wanted to have a magic wand that would make everything all better.
At some point I realized that I had to make a choice. So, my choice was to put on good music, allow myself to cry, allow myself to rest, and to call a friend who I knew would love and encourage me through this. Did these things make it all go away? NO! But I'm not as down as I was before, and I have my focus on better things. This has been really hard because I was always taught that emotions are wrong, and that if you worry or are scared about something that means you aren't trusting in God. As I have grown, and read the Bible for myself, I see these things are simply wrong. Even Jesus wept when Lazarus died (even though He knew what was coming); even Jesus got angry enough to throw over tables; even Jesus called people names (Vipers) when the situation was appropriate. So, if Jesus can experience strong emotions, then so can we.
If you are down and discouraged today maybe some of the things that have helped me will help you too. I put on good music, make a list of all the good things in my life, spend time with those who love me unconditionally (even just on the phone), and do activities that I enjoy. What are things that have helped to encourage you?
Friday, December 20, 2013
Perspective
Right now I'm angry. I'm so tired of ridiculous discussions where no one listens to another perspective. I'm tired of being told: "Be careful what you read because people just want to paint this person in a bad light". I think we have some really skewed perspectives that need changing!
I admit it, I've never watched the show, we don't have cable. Frankly I don't really care what Phil Robertson has to say. Here's what blows me away... So many "Christians" are sticking up for a man saying he is being "persecuted for his religious beliefs" when that is not the case. His comments at best were incredibly rude and crass (NO it wasn't just quoting Bible). If A&E wanted to fire him, then so be it! That doesn't mean he is being persecuted.
Here is what is REALLY bothering me about this whole situation. "Christians" are outraged by him getting fired for what he said, and over 50,000 people have signed a petition in 24 hours. BUT these same people are NOT seemingly as bothered by the child abuse that goes on WITHIN the church (GRACE put together a petition for the church at large to address the issue of child sexual abuse going on within the church and in 4 months has only gotten 1,600 signatures). (Find it here) Someone please tell me why we care more about the argument between Phil Robertson and A&E than when an adult permanently scars a child by sexually abusing them!!!!!
I understand that he is entitled to his beliefs, everyone is. If he really wants to represent the God that I love and serve in a way that will cause others to want to know God, then he should be loving, not rude and crass. The Bible says that without love we are nothing, and I saw no love from him, and frankly see very little of it in all of the discussions going on in various places online.
I guess my challenge is to think about your perspective. We are so quick to jump on a bandwagon of a celebrity, but so painfully slow in speaking up about those who would hurt a child.
I admit it, I've never watched the show, we don't have cable. Frankly I don't really care what Phil Robertson has to say. Here's what blows me away... So many "Christians" are sticking up for a man saying he is being "persecuted for his religious beliefs" when that is not the case. His comments at best were incredibly rude and crass (NO it wasn't just quoting Bible). If A&E wanted to fire him, then so be it! That doesn't mean he is being persecuted.
Here is what is REALLY bothering me about this whole situation. "Christians" are outraged by him getting fired for what he said, and over 50,000 people have signed a petition in 24 hours. BUT these same people are NOT seemingly as bothered by the child abuse that goes on WITHIN the church (GRACE put together a petition for the church at large to address the issue of child sexual abuse going on within the church and in 4 months has only gotten 1,600 signatures). (Find it here) Someone please tell me why we care more about the argument between Phil Robertson and A&E than when an adult permanently scars a child by sexually abusing them!!!!!
I understand that he is entitled to his beliefs, everyone is. If he really wants to represent the God that I love and serve in a way that will cause others to want to know God, then he should be loving, not rude and crass. The Bible says that without love we are nothing, and I saw no love from him, and frankly see very little of it in all of the discussions going on in various places online.
I guess my challenge is to think about your perspective. We are so quick to jump on a bandwagon of a celebrity, but so painfully slow in speaking up about those who would hurt a child.
Tuesday, November 5, 2013
Thankful
I have lots of friends who are doing 30 days of thankfulness and saying something each day this month that they are thankful for. I love the idea, and I contemplated doing it myself, but I know we are in for a crazy month because our youngest daughter is having yet another major surgery later this month. So, I decided that instead of doing one every day I would just make a list of some of the things that I'm thankful for and post them all at once!
1. I'm thankful for my wonderful husband who has stood by me and supported me in amazing ways!
2. I'm thankful for my children and the joy they bring to my life!
3. I'm thankful that over the last few years I have come to know who God really is!
4. I'm thankful for hope and that there is always hope!
5. I'm thankful for the amazing friends that have loved me unconditionally.
6. I'm thankful for some of the amazing doctors that have been able to help our sweet baby girl!
7. I'm thankful for the beautiful home that we are privileged to live in.
8. I'm thankful that God is always faithful!
9. I'm thankful that even though things are tight we always have enough.
10. I'm thankful for great music and how it does so much to brighten my days!
11. I'm thankful that a simple inexpensive coat of paint can change the whole feel of a room!
12. I'm thankful for clean, warm water, and that we don't have to worry about that.
13. I'm thankful that our son keeps us laughing and is often a bright spot in tough days.
14. I'm thankful that our oldest daughter is loving her new school and is thriving there!
15. I'm thankful that our sweet baby girl is tough because that has helped her walk this icky road.
16. I'm thankful that we have insurance.
17. I'm thankful for the crap that I have gone through in life because that has made me who I am today.
18. I'm thankful for the school my kids go to and that we are able to choose the school that best fits them!
19. I'm thankful for coffee! It helps me get going every morning!
20. I'm thankful for the amazing grandparents my kids have!
21. I'm thankful for a Grandma that prayed for me every day and loved me unconditionally.
22. I'm thankful that it is so easy to keep in contact with people far away that I love!
23. I'm thankful for a smartphone that I can download games on to keep little ones occupied easily!
24. I'm thankful that I'm able to work on line from home!
25. I'm thankful that I live in Arizona where I don't have to freeze, but where we can easily "visit" the snow.
26. I'm thankful for freedom!
27. I'm thankful for how easy it is to find new, yummy recipes online!
28. I'm thankful for my oldest daughter's adoptive parents and how they love her!
29. I'm thankful for churches that not only teach the truth of the Bible, but LIVE it out!
30. I'm thankful that we can break the cycle of abuse within our family, and instead build wonderful memories of real love with our children!
1. I'm thankful for my wonderful husband who has stood by me and supported me in amazing ways!
2. I'm thankful for my children and the joy they bring to my life!
3. I'm thankful that over the last few years I have come to know who God really is!
4. I'm thankful for hope and that there is always hope!
5. I'm thankful for the amazing friends that have loved me unconditionally.
6. I'm thankful for some of the amazing doctors that have been able to help our sweet baby girl!
7. I'm thankful for the beautiful home that we are privileged to live in.
8. I'm thankful that God is always faithful!
9. I'm thankful that even though things are tight we always have enough.
10. I'm thankful for great music and how it does so much to brighten my days!
11. I'm thankful that a simple inexpensive coat of paint can change the whole feel of a room!
12. I'm thankful for clean, warm water, and that we don't have to worry about that.
13. I'm thankful that our son keeps us laughing and is often a bright spot in tough days.
14. I'm thankful that our oldest daughter is loving her new school and is thriving there!
15. I'm thankful that our sweet baby girl is tough because that has helped her walk this icky road.
16. I'm thankful that we have insurance.
17. I'm thankful for the crap that I have gone through in life because that has made me who I am today.
18. I'm thankful for the school my kids go to and that we are able to choose the school that best fits them!
19. I'm thankful for coffee! It helps me get going every morning!
20. I'm thankful for the amazing grandparents my kids have!
21. I'm thankful for a Grandma that prayed for me every day and loved me unconditionally.
22. I'm thankful that it is so easy to keep in contact with people far away that I love!
23. I'm thankful for a smartphone that I can download games on to keep little ones occupied easily!
24. I'm thankful that I'm able to work on line from home!
25. I'm thankful that I live in Arizona where I don't have to freeze, but where we can easily "visit" the snow.
26. I'm thankful for freedom!
27. I'm thankful for how easy it is to find new, yummy recipes online!
28. I'm thankful for my oldest daughter's adoptive parents and how they love her!
29. I'm thankful for churches that not only teach the truth of the Bible, but LIVE it out!
30. I'm thankful that we can break the cycle of abuse within our family, and instead build wonderful memories of real love with our children!
Friday, November 1, 2013
Bitterness
Bitterness ~ An accusation that is often used to silence a victim, or to discredit what they have to say so that no one else will pay attention.
I believe that this accusation is thrown around so frequently that we have lost sight of what bitterness really is. Webster defines bitterness as a deep seated ill will. Some synonyms given are animosity and antagonism. Please take notice that the synonyms are NOT anger, justice seeking, frustration, hurt, or removing oneself from a potentially dangerous situation!!
Can bitterness come from deep pain and how you choose to deal with deep pain, yes. BUT, hurt, anger, grief, tears, frustration, etc are all a part of the healing process. It is very normal and natural to have a myriad of emotions when you are deeply hurt. Working through these emotions is part of how most people heal over time. Bitterness comes when you choose to hold on to these emotions and let them consume your entire being.
If you are a victim please don't let people discourage you from working through the emotions and pain that you have gone through by throwing out this accusation! Working through the pain is how you keep from holding it all in and becoming bitter. Choosing to distance yourself from your abuser and cut off contact with them is WISE it does not indicate wrong doing on your part.
To those who throw out this accusation to silence victims: SHAME ON YOU! Instead of taking the easy way out, why don't you choose to love as Jesus did!
I believe that this accusation is thrown around so frequently that we have lost sight of what bitterness really is. Webster defines bitterness as a deep seated ill will. Some synonyms given are animosity and antagonism. Please take notice that the synonyms are NOT anger, justice seeking, frustration, hurt, or removing oneself from a potentially dangerous situation!!
Can bitterness come from deep pain and how you choose to deal with deep pain, yes. BUT, hurt, anger, grief, tears, frustration, etc are all a part of the healing process. It is very normal and natural to have a myriad of emotions when you are deeply hurt. Working through these emotions is part of how most people heal over time. Bitterness comes when you choose to hold on to these emotions and let them consume your entire being.
If you are a victim please don't let people discourage you from working through the emotions and pain that you have gone through by throwing out this accusation! Working through the pain is how you keep from holding it all in and becoming bitter. Choosing to distance yourself from your abuser and cut off contact with them is WISE it does not indicate wrong doing on your part.
To those who throw out this accusation to silence victims: SHAME ON YOU! Instead of taking the easy way out, why don't you choose to love as Jesus did!
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