I have decided to take my son out of school at the end of this year. For years I was intent on the fact that he would be in school as long as they allowed. Since he is in the moderately handicapped program with Functional Behavior curriculum, he can attend until he is 22 years old. When he transitioned this year from the local high school program to the Adult Transitions Program I had high hopes that this program would be beneficial for him and meet his needs.
Boy, was I wrong.
My son has had a 1:1 paraprofessional since the end of 7th grade. While she has been helpful at providing that external control that his brain is lacking due to his Fetal Alcohol Syndrome, she has not done good things as far as his attachment resistance. Not fully understanding the boundaries we needed to keep in order for him to continue with healthy attachment with us, she really did clog up the works. I gently nudged and offered suggestions. When things were blatantly I problem I corrected them, but things were never perfect. Not wanting to upset the apple cart, I didn't want to cause a stink and ask for a different staff member. I figured the flawed one that worked well with him was the lesser evil than one that could be worse.
This year, for several reasons, that came crashing down.
Boundaries have been crossed.
I think that part of the problem is that the program itself is meant to make these students more independent and more self sufficient. My son needs CONSTANT supervision. While he is able to accomplish some independent tasks, he still needs supervision. Daily reminders like "You are an adult now ...." and "When you are living alone ....." have served to amp up his already anxious and defiant behavior. What he is being told at school and his reality are causing him confusion and anger. No matter how many times I have this discussion with those in charge, things are not changing. It is frustrating.
It is equally frustrating for them I am sure. He displays a completely different set of behaviors at school and on his job site than he does at home. He is able to function semi independently, but once again he is continually supervised. The minute he knows he is not being watched, he makes foolish choices dues to the dangerous cocktail of lack of object permanence, impulse control and just plain trauma. There he is the center of attention and doesn't have to compete with others. They have no concept of the child who is typically the one we see at home and unfortunately I don't think they believe what I tell them.
They don't believe what I tell them.
Let's let that sink in a bit. I am well aware that no one can truly understand this life unless you live it, even those who are tasked to deal with our children at school for many hours a day. But PLEASE for the love of all that is holy, listen to what a parent says to you and don't question it when they say it is HARD. You are simply adding to the load when you give me that look of disbelief. I am not exaggerating he really did eat 14 bananas in one sitting and all the peels ARE behind his dresser at home I promise!! I do find blocks of cheese hidden in his pants to take upstairs later and he truly did try to put the cat in the backpack to play with him later. Why would I make that up!? I don't find it humorous, I am certainly not bragging. I would absolutely choose BORING over my life any day!
So today when I had a small discussion about pulling my child from school to put him in a day program that "gets" him and works with the parents as a TEAM and will strengthen our rules and expectations at home the teacher was not altogether positive. I was chastised a bit for not meeting with Voc-Rehab about finding him a job. A job is simply not in his future. Perhaps the workshop at the day program will be a good fit for him to make some money in the future, but a job working in the "real world" even with job coaching will not ever work unless he has 24/7 supervision and that is not available. When the teacher mentioned accessing his own transportation independently I laughed. It was not kind, but I said "You really have no idea what my child is really like. You are completely clueless." And the conversation was over. How can you support parents when you refuse to see the forest directly in front of you. If you are focusing on the cute little sapling and not seeing the giant redwoods in the near vicinity you are worthless in my world and my child's. We have larger issues at hand.
Thankfully we have a wonderful team behind us. His day program has his number and he does well there. His behavioral consultant is a gem and understands him well. Our case manager is responsive and kind. I think we are on a good path. School is about to become a thing of the past!
Monday, April 14, 2014
Tuesday, April 08, 2014
The day the interwebs restored my hope in humanity . . .
Saturday night we had a bit of a fire at our house. Our coffee table caught on fire from a candle. It was caught in time and we got very lucky. When my husband came downstairs the flames were about 4 foot high. The couch & the rug were scorched and all the stuff on the table was ruined. That included my beloved camera and a brand new lens. I was not home and when my husband called me to break the news I was of course very relieved everyone was safe but so very sad about my camera.
Then the panic set in. That camera is slowly becoming a new source of income for us. I recently participated in a wedding fair and I have MANY weddings booked this season as well as my typical sessions with families and children. I also recently became involved with National Rock Review and I am shooting shows for them as well. I NEED my camera!
We do, of course, have homeowners insurance but there is a hefty deductible. With my husband's illness, it would be a hardship to come up with $1000 for the deductible but was totally necessary considering the situation. Had it been anything but the camera we would've likely done without. I would happily sit on the floor or in lawn chairs, but I needed that dang camera! I spent most of Sunday in tears. The camera was sitting on the dining room table and every time I would walk by it I would start again. It was just so terribly sad to see it there all melty and burnt.
One of my dear momma's from BeTA - Beyond Trauma and Attachment took it upon herself to set up a "Go Fund Me" account for me to try to help come up with the deductible. It was late Sunday night when it went up and by the morning we were already at 20%. Then miracles began to happen!
To be completely honest I was a bit overwhelmed that people were giving me money. I felt a HUGE sense of thankfulness, but also a bit of shame that I would be in this position. I had several friends throughout the day encourage me that they wanted to help and that I should not feel that way at all. I was told over and over that I had given so much to others and that I should sit back and accept this. I began getting notifications on Facebook that we were climbing to 40%, then 50% then more. By 2:00pm Monday were we fully funded and money was still coming in. The link to the Go Fund Me had been shared over a hundred times and people that I did not even know were contributing. It was AMAZING.
Through out the afternoon I continued to get wonderfully kind messages from friends telling me that they were happy to help and pleased they could contribute. By the time I went to bed last night it was 140% funded and I had changed my profile picture to that melty camera. It went from a photo of something that was AWFUL to a photo of HOPE. It went from a sight that made me cry to a BEACON of all that is GOOD in my world. I no longer see it is UGLY. I have an amazing support system and I am reminded that given the chance people are GOOD. My loved ones and STRANGERS did something together that affected me so profoundly I will not be the same.
I could never express my gratitude.
I will pay this forward when I am able.
I will forever be touched by the kindness shown to me and my family.
I have decided that this fire will be the turning point in my year. I will not let the ugliness of "what if" affect me but revel in the fact that things were not so much worse. I will see this as a CLEANSING fire and I will rise from it stronger, more determined and much more able to feel loved. I am not alone.
Then the panic set in. That camera is slowly becoming a new source of income for us. I recently participated in a wedding fair and I have MANY weddings booked this season as well as my typical sessions with families and children. I also recently became involved with National Rock Review and I am shooting shows for them as well. I NEED my camera!
We do, of course, have homeowners insurance but there is a hefty deductible. With my husband's illness, it would be a hardship to come up with $1000 for the deductible but was totally necessary considering the situation. Had it been anything but the camera we would've likely done without. I would happily sit on the floor or in lawn chairs, but I needed that dang camera! I spent most of Sunday in tears. The camera was sitting on the dining room table and every time I would walk by it I would start again. It was just so terribly sad to see it there all melty and burnt.
One of my dear momma's from BeTA - Beyond Trauma and Attachment took it upon herself to set up a "Go Fund Me" account for me to try to help come up with the deductible. It was late Sunday night when it went up and by the morning we were already at 20%. Then miracles began to happen!
To be completely honest I was a bit overwhelmed that people were giving me money. I felt a HUGE sense of thankfulness, but also a bit of shame that I would be in this position. I had several friends throughout the day encourage me that they wanted to help and that I should not feel that way at all. I was told over and over that I had given so much to others and that I should sit back and accept this. I began getting notifications on Facebook that we were climbing to 40%, then 50% then more. By 2:00pm Monday were we fully funded and money was still coming in. The link to the Go Fund Me had been shared over a hundred times and people that I did not even know were contributing. It was AMAZING.
Through out the afternoon I continued to get wonderfully kind messages from friends telling me that they were happy to help and pleased they could contribute. By the time I went to bed last night it was 140% funded and I had changed my profile picture to that melty camera. It went from a photo of something that was AWFUL to a photo of HOPE. It went from a sight that made me cry to a BEACON of all that is GOOD in my world. I no longer see it is UGLY. I have an amazing support system and I am reminded that given the chance people are GOOD. My loved ones and STRANGERS did something together that affected me so profoundly I will not be the same.
I could never express my gratitude.
I will pay this forward when I am able.
I will forever be touched by the kindness shown to me and my family.
I have decided that this fire will be the turning point in my year. I will not let the ugliness of "what if" affect me but revel in the fact that things were not so much worse. I will see this as a CLEANSING fire and I will rise from it stronger, more determined and much more able to feel loved. I am not alone.
Tuesday, March 18, 2014
For this moment . . .
Do you ever have that epiphany that all the stuff leading up to this moment in time had a specific purpose? That is where I am in my life right now. The last few years have been such a time of growth and learning. I am a different person. I am a better person. And it is evident that it has all been leading me to this place.
I can easily look back at my life and see significant changes. I can see the me from high school. I was quiet and had very little self esteem. My freshman year in college I became close to a previous acquaintance, Angie, and she taught me to love myself regardless of what others thought. She taught me that I was valuable not for how others saw me, but for what was inside. I was changed. I grew into a person who was confident and clear on my goals. It was probably the first time that I was changed to much by one person touching my life. She helped put me on a path that forged the adult I would come to be.
As I look back on the last few years I can see numerous things that lay in he road of my past that have formed me and prepared me for the obstacles that lay ahead. I am thankful for each of those growth experiences even if they were hard to overcome. If I had not learned the lessons and applied them to my life, my road today would be much harder.
Breaking my leg in several places a few years ago was a turning point in my marriage. What?! Yes. It changed my marriage. I was laid up on bed rest for several weeks. I was reliant on my husband and kids to do everything for me. From someone who is "take-charge" and a control freak that was beyond difficult. I realized that I am not the one that has to do everything. I learned that others can be just as efficient as I am and can handle the responsibility. Even after bed rest was over, I had a year when I could do very little. I rested in the fact that my family was there for me and could step up. My husband really became a caretaker and I realized that he could be there for me. We grew together during this long time of recovery. He has absolutely taken care of me even to this day. There is rarely a time when I say I need something that he does not jump up and get it for me. He knows that every step I take is painful on some level still and he tries to alleviate that for me as much as he can. God is faithful, and while I still struggle with pain, I know that I have been blessed through the experience.
The other part of my journey was learning Reiki. Reiki has changed my life by making me be more aware of the energy around me and the energy that I am putting out there. I have learned that my energy affects those around me and vice versa. I focus more on making myself calm when approaching my kids and generating positive energy when I want it to affect them. The Reiki journey has been so very important in the way I view people as well. I have always been quick to assume things about people and quick to have a snarky come back. I think Reiki and the positive energy it creates in me has caused me to be more of a positive soothing presence. I am far more quick to assume the best in people. I give people the benefit of the doubt and see the difficulty in their situation instead of the immediate reaction of irritation. I feel it has strengthened my resolve to be an encourager. It has made me much more intentional in what I do. Reiki has drawn me closer to my friend Valerie, whom I took the classes with. We are bonded in ways I cannot completely understand. We share some sort of energy and it is positive and uplifting. I am thankful for her presence in my life. She is a rock, understands my humor and commiserates with me when needed. I believe that my Reiki is given from God and I accept the energy and healing he provides. You can read a bit of my Reiki journey here, here and here.
Last year we became a larger family by welcoming a long time friend into our fold while she was pregnant with her first child. We supported her emotionally and physically through her pregnancy and she became an integral part of our family. She understands my kiddos and their issues. She loves us as much as we love her. I was blessed to be at the birth of her son and cut the cord. Robert and I "play" grammy and grampy to an adorable, cherub faced, red headed baby boy. We adore them as our own, because they are a part of us. They have both given us so much joy. She is understanding of our trials and is super helpful when something comes up. She is always willing to give of herself to help us in any way she possibly can. She is loving and caring and I am so proud of the momma she has become. That boy's smile and smoochies can light up my day! I am so thankful that they are in our life and have given us another reason to focus on the good. God knew what he was doing when he stuck her in our lives!
The last and most important is the addition of my TRIBE in my life. I blogged recently about my third year in Orlando with my moms from Beyond Trauma and Attachment and I meant every word. My friends who are also raising kids from hard places are my lifeline. They hold me up when I need it. They laugh with me when I can't stand drama anymore. And they love me unconditionally. I have never in my whole life felt like I "fit" somewhere as I do with my BeTA girls. This year was very freeing for me. I felt like the misfit who was always picked last for kickball finally made it "in" with the cool kids. I felt loved and accepted. I felt important. Not important in a superior way, but important in a way that I was cared for by others. I feel as though I have found the spot I have always belonged. I feel like I have always had a BeTA fish shaped whole in my heart and it was finally filled. The most amazing thing about this tribe is that we are all so very different. We come from different areas of the country, different backgrounds, different political and spiritual persuasions, we have different sexual preferences and different thoughts about life, but we accept one another as we are on the same road with similar challenges. We respect one another and our choices are our own, but we can still support and love. For me, that is the true definition of family. I have been blessed with a few of those mommas who I know have my back at a moment's notice. I know I can hide out at their house 9 hours away when I need to escape (and have), I know they will fly here to help if needed and I know that I can call them and always count on them listening to my cry or laugh hysterically. I can wake up to them serenading me on facebook voice chat, get emails that they have placed a gift in my paypal account and have Amazon boxes delivered to my door. They are my strength. They complete me and hold me up more than they could ever imagine. I am humbled by he generosity and am forever grateful.
As I sit and ponder what the immediate future holds for our family in the liver transplant process, I can't fathom doing it as the person I was a few short years ago. The amount of support I have now and the love I feel from others is such a blessing. I would be an absolute mess without the love of my tribe. I would be crazy to think I could do this without the strengthened relationship I have with my amazing husband. I have a local friend that I adore and share a special bond with. I have a surrogate grandbaby who lights up my life and a friend who isn't afraid of my life and what it entails. I can look back and see that the journey God has put us on has driven us to a place where we can do this. I am much more at peace than I could imagine. I know this is because I am being held up. I am being prayed for, loved on and being sent positive energy.
I am forever thankful for the journey.
I have been prepared for this moment and I can do this.
I can easily look back at my life and see significant changes. I can see the me from high school. I was quiet and had very little self esteem. My freshman year in college I became close to a previous acquaintance, Angie, and she taught me to love myself regardless of what others thought. She taught me that I was valuable not for how others saw me, but for what was inside. I was changed. I grew into a person who was confident and clear on my goals. It was probably the first time that I was changed to much by one person touching my life. She helped put me on a path that forged the adult I would come to be.
As I look back on the last few years I can see numerous things that lay in he road of my past that have formed me and prepared me for the obstacles that lay ahead. I am thankful for each of those growth experiences even if they were hard to overcome. If I had not learned the lessons and applied them to my life, my road today would be much harder.
Breaking my leg in several places a few years ago was a turning point in my marriage. What?! Yes. It changed my marriage. I was laid up on bed rest for several weeks. I was reliant on my husband and kids to do everything for me. From someone who is "take-charge" and a control freak that was beyond difficult. I realized that I am not the one that has to do everything. I learned that others can be just as efficient as I am and can handle the responsibility. Even after bed rest was over, I had a year when I could do very little. I rested in the fact that my family was there for me and could step up. My husband really became a caretaker and I realized that he could be there for me. We grew together during this long time of recovery. He has absolutely taken care of me even to this day. There is rarely a time when I say I need something that he does not jump up and get it for me. He knows that every step I take is painful on some level still and he tries to alleviate that for me as much as he can. God is faithful, and while I still struggle with pain, I know that I have been blessed through the experience.
The other part of my journey was learning Reiki. Reiki has changed my life by making me be more aware of the energy around me and the energy that I am putting out there. I have learned that my energy affects those around me and vice versa. I focus more on making myself calm when approaching my kids and generating positive energy when I want it to affect them. The Reiki journey has been so very important in the way I view people as well. I have always been quick to assume things about people and quick to have a snarky come back. I think Reiki and the positive energy it creates in me has caused me to be more of a positive soothing presence. I am far more quick to assume the best in people. I give people the benefit of the doubt and see the difficulty in their situation instead of the immediate reaction of irritation. I feel it has strengthened my resolve to be an encourager. It has made me much more intentional in what I do. Reiki has drawn me closer to my friend Valerie, whom I took the classes with. We are bonded in ways I cannot completely understand. We share some sort of energy and it is positive and uplifting. I am thankful for her presence in my life. She is a rock, understands my humor and commiserates with me when needed. I believe that my Reiki is given from God and I accept the energy and healing he provides. You can read a bit of my Reiki journey here, here and here.
Last year we became a larger family by welcoming a long time friend into our fold while she was pregnant with her first child. We supported her emotionally and physically through her pregnancy and she became an integral part of our family. She understands my kiddos and their issues. She loves us as much as we love her. I was blessed to be at the birth of her son and cut the cord. Robert and I "play" grammy and grampy to an adorable, cherub faced, red headed baby boy. We adore them as our own, because they are a part of us. They have both given us so much joy. She is understanding of our trials and is super helpful when something comes up. She is always willing to give of herself to help us in any way she possibly can. She is loving and caring and I am so proud of the momma she has become. That boy's smile and smoochies can light up my day! I am so thankful that they are in our life and have given us another reason to focus on the good. God knew what he was doing when he stuck her in our lives!
The last and most important is the addition of my TRIBE in my life. I blogged recently about my third year in Orlando with my moms from Beyond Trauma and Attachment and I meant every word. My friends who are also raising kids from hard places are my lifeline. They hold me up when I need it. They laugh with me when I can't stand drama anymore. And they love me unconditionally. I have never in my whole life felt like I "fit" somewhere as I do with my BeTA girls. This year was very freeing for me. I felt like the misfit who was always picked last for kickball finally made it "in" with the cool kids. I felt loved and accepted. I felt important. Not important in a superior way, but important in a way that I was cared for by others. I feel as though I have found the spot I have always belonged. I feel like I have always had a BeTA fish shaped whole in my heart and it was finally filled. The most amazing thing about this tribe is that we are all so very different. We come from different areas of the country, different backgrounds, different political and spiritual persuasions, we have different sexual preferences and different thoughts about life, but we accept one another as we are on the same road with similar challenges. We respect one another and our choices are our own, but we can still support and love. For me, that is the true definition of family. I have been blessed with a few of those mommas who I know have my back at a moment's notice. I know I can hide out at their house 9 hours away when I need to escape (and have), I know they will fly here to help if needed and I know that I can call them and always count on them listening to my cry or laugh hysterically. I can wake up to them serenading me on facebook voice chat, get emails that they have placed a gift in my paypal account and have Amazon boxes delivered to my door. They are my strength. They complete me and hold me up more than they could ever imagine. I am humbled by he generosity and am forever grateful.
As I sit and ponder what the immediate future holds for our family in the liver transplant process, I can't fathom doing it as the person I was a few short years ago. The amount of support I have now and the love I feel from others is such a blessing. I would be an absolute mess without the love of my tribe. I would be crazy to think I could do this without the strengthened relationship I have with my amazing husband. I have a local friend that I adore and share a special bond with. I have a surrogate grandbaby who lights up my life and a friend who isn't afraid of my life and what it entails. I can look back and see that the journey God has put us on has driven us to a place where we can do this. I am much more at peace than I could imagine. I know this is because I am being held up. I am being prayed for, loved on and being sent positive energy.
I am forever thankful for the journey.
I have been prepared for this moment and I can do this.
Wednesday, March 12, 2014
Third time is a charm . . .
In March of 2012, I was given the privilege to go to the Early Trauma and Attachment Annual Meeting in Orlando. It was life changing. I found my people. I felt so at home with those who were raising children who came from hard places such as my son. Some had children from foster care, some had children from international adoption and some even had bio children or step children. The common thread was the effect of early trauma on our children. I learned so much from my fellow moms of trauma and I was changed. That year I soaked in all the information I heard. I became a better parent, a better wife and a better person. I began to research alternative methods and became involved in learning Reiki. I was irrevocably changed due to my time in Orlando.
In March of 2013, I was thrilled to return to Orlando. That year my focus was a bit different. I felt the need to speak to as many women as I possibly could. I searched out others for their techniques and their parenting styles. I felt like I could not possibly learn enough. I wanted to talk to others and learn from their experiences. It was a freeing year as I sought out new people and new information. I learned about EFT tapping and continue to use it daily. Our leader, Corey had made the decision to step down from her duties and a wonderful woman stepped up to the plate. Rachel asked me to help and I was thrilled. We began to really delve into the reasons people came to Orlando and what we could do to improve the wonderful legacy that we had been left with.
This last 12 months have been a whirlwind of planning and learning. Beyond Trauma and Attachment (BeTA) was born. A website was created. We drew together a Board of Directors and had lots of input on this year's retreat. We meshed well as a group and the 10 Board Members and the 10 Host Mothers for this year worked our tails off to provide a wonderful framework for this year's retreat. Rachel was our driving force and her HARD WORK and her desire to reach out to families who needed us inspirational. I am thankful for her guidance and friendship.
This past week I traveled to Orlando for my third time. Each time I have been involved with this retreat I have learned so much about myself and this year was no different. This year I think I grew more on a personal level. I learned so much about myself and I learned that I am loved and cherished by my friends. This year I happened to be going through a serious illness with my husband and I have never felt so very
loved.
I was blessed to be the host mom of 12 wonderful women. While we all came from different backgrounds and perspectives we respected and held one another up. I have never seen more bravery, more love, more kindness personified. I met women who are raising children who have been challenged with Fetal Alcohol Syndrome, BiPolar, Schizophrenia and RAD. I met mommas who are caring for children with physical disabilities and children who appear to be completely typical. The one thing we have in common is that we have all been affected by trauma just as our children have. I cried and laughed more than I ever knew I could. I learned so very many things.
This year was MY year. It was more about me than my kids. I spent most of my time in my own villa, getting to know those around me. I shared things that I have learned and I listened. I listened to so many brave women share their stories. I reveled in the fact that we are all strong and we CAN do this.
I also spent time in the presence of those most precious to me. I strengthened relationships that were started the past few years. I worked on feeling their energy and surrounding myself with the positivity. I tried to attune myself to the energy of others and just plain sit with the "goodness". I needed to rest in the fact that I am loved. As mothers we sometimes forget that we are important too. That was the gift that Orlando gave me this year. This year I found out that I am important.
Tears were a big part of Orlando for me this year. I cried because of the pain I felt for others and their own trauma. I cried because I felt so special and loved. I cried because I don't want to leave those that I love so very much. I cried because we are all so damn strong and I am so proud of all of us. But I mostly cried because I am blessed to be a part of something bigger than myself. I am blessed to see others coming together to help, hold up and love others.
The next several months hold lots of trauma for our family. My husband will be receiving a new liver. Someone will give him the gift of life. I will need much support and I know beyond a shadow of a doubt that my BeTA ladies have my back. I have filled my cup with the goodness that is Orlando and I know I can revisit that fountain as I need to over the next year. The gift I have been given is priceless. I have been given the gift of acceptance, love and kinship.
The legacy that was started 4 years ago lives on and I am eternally grateful for that one brave woman who stepped out and reached out to others living a very similar life. Thank you Corey. You are loved and your vision lives on.
Transplant is necessary . . .
My husband, Robert, went to meet with IU's liver transplant team last week. I was at my yearly conference in Orlando so I was not able to attend, but he loved his doctor and felt very at ease with the whole appointment. Plans have been made.
They confirmed that Robert is very ill. His liver is extremely diseased and has no ability to regenerate. It is definitely time for a transplant. They told him that if he does not get the transplant, within 2 years he will be gravely ill.
There was lots of talk about the worthiness of him as an organ recipient. That was not only humbling but very interesting. He will be given the gift of life. Due to that, it is imperative that we make sure he is physically healthy in every other way. It would be a waste of a donated liver to give it to someone who is ill in another way. Robert will undergo a plethora of testing to make sure the remainder of his organs are healthy and can sustain life. Tests will be scheduled over the next few weeks for this purpose. They have told us that livers are not in short supply which is fabulous. The donated liver simply must have the same blood type as Robert in order to be used.
Once Robert goes to the committee and he is approved to be an organ recipient, it could be as long as 6 months before the transplant is done. We are still very uncertain as to what will happen, how and when. We are at the mercy of their schedules at IU Med Center. We will be taking a class that will let us know what to expect.
I am very thankful that we have the opportunity to accept a liver from a donor. What a privilege to be given a second chance at life due to someone else's gift! If I am completely honest I am also entirely freaked out. The prospect of someone opening up my husband, removing an important organ and replacing it with another scares me. I know that liver transplants are the most common transplant, but complications still happen. I just need to rest assured that he is in the best hands possible and he will be fine.
They confirmed that Robert is very ill. His liver is extremely diseased and has no ability to regenerate. It is definitely time for a transplant. They told him that if he does not get the transplant, within 2 years he will be gravely ill.
There was lots of talk about the worthiness of him as an organ recipient. That was not only humbling but very interesting. He will be given the gift of life. Due to that, it is imperative that we make sure he is physically healthy in every other way. It would be a waste of a donated liver to give it to someone who is ill in another way. Robert will undergo a plethora of testing to make sure the remainder of his organs are healthy and can sustain life. Tests will be scheduled over the next few weeks for this purpose. They have told us that livers are not in short supply which is fabulous. The donated liver simply must have the same blood type as Robert in order to be used.
Once Robert goes to the committee and he is approved to be an organ recipient, it could be as long as 6 months before the transplant is done. We are still very uncertain as to what will happen, how and when. We are at the mercy of their schedules at IU Med Center. We will be taking a class that will let us know what to expect.
I am very thankful that we have the opportunity to accept a liver from a donor. What a privilege to be given a second chance at life due to someone else's gift! If I am completely honest I am also entirely freaked out. The prospect of someone opening up my husband, removing an important organ and replacing it with another scares me. I know that liver transplants are the most common transplant, but complications still happen. I just need to rest assured that he is in the best hands possible and he will be fine.
Saturday, December 28, 2013
So blessed ...
This week has been a whirlwind. My husband has not been feeling well. That is truly nothing new, for the last few years it seems he comes down with every illness around. He is always struggling with fevers and stomach ailments. He has had more and more headaches. Recently it has been getting worse. Last weekend he took my son to the ER because we thought he had broken his tailbone throwing himself down on the floor. While there, my husband passed out in the bathroom and was admitted to the ER himself. They found that he had low blood platelets. He had been struggling with BARELY eating and still gaining weight. He tried calling our doctor but he was out for the week. We decided he would wait until after the holidays. That all came to a head on Sunday before Christmas.
Sunday he came downstairs and looked like he was 9 months pregnant with twins. He was terribly bloated and I worried he was bleeding internally. We contacted our nurse hotline and they sent him immediately to the ER. Once there we found out that he had cirrhosis of the liver and was quite sick. They transported him to the main hospital and admitted him.
Through the testing we found out that having a malfunctioning liver leads to MANY other complications. They did end up removing 12+ pounds of fluid from his abdomen. His Liver Functioning Tests (LFT) is a 14. At 16 they put you on a pre-transplant list and at 17 you go on the list for a transplant. We are talking serious illness. The tests revealed bulging veins in his airway due to the blood not being cleansed and heavy pressure. These veins needed to be seen in endoscopy to see how far along they had progressed and if they needed intervention. If these veins are too taxed, they can burst and he will die of an aneurism. The issue was that his platelets were so low that they refused to do the testing until the counts were up. That resulting in lots of bags of platelets and lots of praying that those counts went up so the testing could be done before Christmas.
Through the work of an amazing nurse, who was very good to my husband, it did happen and he came home on Christmas Eve's evening. Now the funs begins as we try to change our lifestyle so that we can maintain the level he is now and possibly even use the Dr. Fuhrman diet to regenerate some of his liver tissue. There is hope, it will just be a long and hard road. But it will be worth it to keep him around a bit longer.
All this to tell you that I have been so tremendously blessed through all of this by my BeTA sisters. I have never in my life felt as though I have been a part of something bigger than myself. I have received more messages of encouragement and kindness than I ever thought possible. I have constantly said that these ladies are my tribe. Raising kids such as ours tends to knit you together in ways that others cannot understand. I always know that they have my back in dealing with my kids, but I was reminded this week that they have my back in other ways too. I have never felt so cared for and loved. They are my tribe. They are my family. I am blessed beyond measure. As a person who has always felt like an outcast and someone who has chosen to remove herself from "the group" consistently, I can barely fathom that people care about me. Sheri. It is humbling and so very special. I am brought to tears.
Thank you ladies for sharing your life, your love and your kindness. You have no idea how deeply touched I am and thankful that I have all of you in my life. March cannot come soon enough!
Sunday he came downstairs and looked like he was 9 months pregnant with twins. He was terribly bloated and I worried he was bleeding internally. We contacted our nurse hotline and they sent him immediately to the ER. Once there we found out that he had cirrhosis of the liver and was quite sick. They transported him to the main hospital and admitted him.
Through the testing we found out that having a malfunctioning liver leads to MANY other complications. They did end up removing 12+ pounds of fluid from his abdomen. His Liver Functioning Tests (LFT) is a 14. At 16 they put you on a pre-transplant list and at 17 you go on the list for a transplant. We are talking serious illness. The tests revealed bulging veins in his airway due to the blood not being cleansed and heavy pressure. These veins needed to be seen in endoscopy to see how far along they had progressed and if they needed intervention. If these veins are too taxed, they can burst and he will die of an aneurism. The issue was that his platelets were so low that they refused to do the testing until the counts were up. That resulting in lots of bags of platelets and lots of praying that those counts went up so the testing could be done before Christmas.
Through the work of an amazing nurse, who was very good to my husband, it did happen and he came home on Christmas Eve's evening. Now the funs begins as we try to change our lifestyle so that we can maintain the level he is now and possibly even use the Dr. Fuhrman diet to regenerate some of his liver tissue. There is hope, it will just be a long and hard road. But it will be worth it to keep him around a bit longer.
All this to tell you that I have been so tremendously blessed through all of this by my BeTA sisters. I have never in my life felt as though I have been a part of something bigger than myself. I have received more messages of encouragement and kindness than I ever thought possible. I have constantly said that these ladies are my tribe. Raising kids such as ours tends to knit you together in ways that others cannot understand. I always know that they have my back in dealing with my kids, but I was reminded this week that they have my back in other ways too. I have never felt so cared for and loved. They are my tribe. They are my family. I am blessed beyond measure. As a person who has always felt like an outcast and someone who has chosen to remove herself from "the group" consistently, I can barely fathom that people care about me. Sheri. It is humbling and so very special. I am brought to tears.
Thank you ladies for sharing your life, your love and your kindness. You have no idea how deeply touched I am and thankful that I have all of you in my life. March cannot come soon enough!
Monday, November 11, 2013
Perspective
Living a life with a child who has experienced early trauma is hard. As a parent you spend your days wavering between frustration and joy. I wrote a while back about the Fringe Benefits of this life where I talked about the ability to give people the benefit of the doubt. I think it also gives you perspective.
I have Obsessive Compulsive Disorder. It is heavily passed through my family through genetics. It is interesting that while a bunch of us have it on my mother's side, we all have a different "Strain" of it. My OCD tends to lean toward the obsessive side of the spectrum. I fret, worry, and ruminate. Medication has helped tremendously, but oddly enough I think living the life I do has helped as well.
There were times prior to adoption that the biggest concern I had was a sink full of dishes. I would fret and worry about messes that seemed organized to other people. It is funny that life now is rarely organized or neatly arranged in any way shape or form and please don't look at my toilets!
When you consider the atrocities that were inflicted upon my child prior to him coming to our home, it makes those things seem foolish. It has been my own version of exposure therapy. Battling demons is hard work and also tiring. It leaves little desire to make sure things are completely stored away in their neat little labeled bins. It is all about perspective.
That is why it is so difficult for me to get bent out of shape about things that seem to hold little importance. My two bio children had parent teacher conferences this past week. My son is brilliant and yet struggles with following through with the minor details. You know, details like turning in work that has been done. Teachers were appropriately bent out of shape about this and I had to muster up some concern for my face. It's not that I am not irritated that he doesn't do turn everything in even when it is done, it is just such a small thing in my perspective. My daughter struggles with homework. It is hard for me fight with her over busy work that really serves no purpose other than making her do the same skill 42 times on a double sided paper. She excels on tests and does amazingly well on her state testing and evaluations, but routinely fails her homework. That tells me that she grasps the concepts and is absolutely unable to make herself take her time on the unnecessary busywork. She shares my OCD and I can she her rebelling against what she believes to be ridiculous amounts of repetition. It is all about perspective.
You see, living in our house is not the typical situation. These kiddos deal with trauma, anxiety, hollering, mental illness and all the drama that ensues. It is not the ideal situation. When they were younger, they really didn't know that our home was any different. They took the door alarms and cameras in stride. They didn't know that other kids don't have to endure an hour long fit from their big brother that includes a restraint. They had no idea that the police didn't have to chase other kids through the neighborhood in their underwear. As they have gotten older, they are realizing that this life is not NORMAL in any way.
While it has taught them tolerance, I think it also has made them angry. I have a hard time forcing homework and freaking out about a grade that is a B when I know they are capable of an A. It might be a dangerous view, but I highly doubt that a D on a science project in 4th grade will effect their future.
I am grateful for this perspective. I have a feeling that I would be a helicopter parent if I had not been given the blessing of learning to CHILL OUT. I think I simply have to learn to balance it and make sure more things are followed through on. It is an important skill for them to learn, I just don't pretend that they should have it all mastered by now.
I have Obsessive Compulsive Disorder. It is heavily passed through my family through genetics. It is interesting that while a bunch of us have it on my mother's side, we all have a different "Strain" of it. My OCD tends to lean toward the obsessive side of the spectrum. I fret, worry, and ruminate. Medication has helped tremendously, but oddly enough I think living the life I do has helped as well.
There were times prior to adoption that the biggest concern I had was a sink full of dishes. I would fret and worry about messes that seemed organized to other people. It is funny that life now is rarely organized or neatly arranged in any way shape or form and please don't look at my toilets!
When you consider the atrocities that were inflicted upon my child prior to him coming to our home, it makes those things seem foolish. It has been my own version of exposure therapy. Battling demons is hard work and also tiring. It leaves little desire to make sure things are completely stored away in their neat little labeled bins. It is all about perspective.
That is why it is so difficult for me to get bent out of shape about things that seem to hold little importance. My two bio children had parent teacher conferences this past week. My son is brilliant and yet struggles with following through with the minor details. You know, details like turning in work that has been done. Teachers were appropriately bent out of shape about this and I had to muster up some concern for my face. It's not that I am not irritated that he doesn't do turn everything in even when it is done, it is just such a small thing in my perspective. My daughter struggles with homework. It is hard for me fight with her over busy work that really serves no purpose other than making her do the same skill 42 times on a double sided paper. She excels on tests and does amazingly well on her state testing and evaluations, but routinely fails her homework. That tells me that she grasps the concepts and is absolutely unable to make herself take her time on the unnecessary busywork. She shares my OCD and I can she her rebelling against what she believes to be ridiculous amounts of repetition. It is all about perspective.
You see, living in our house is not the typical situation. These kiddos deal with trauma, anxiety, hollering, mental illness and all the drama that ensues. It is not the ideal situation. When they were younger, they really didn't know that our home was any different. They took the door alarms and cameras in stride. They didn't know that other kids don't have to endure an hour long fit from their big brother that includes a restraint. They had no idea that the police didn't have to chase other kids through the neighborhood in their underwear. As they have gotten older, they are realizing that this life is not NORMAL in any way.
While it has taught them tolerance, I think it also has made them angry. I have a hard time forcing homework and freaking out about a grade that is a B when I know they are capable of an A. It might be a dangerous view, but I highly doubt that a D on a science project in 4th grade will effect their future.
I am grateful for this perspective. I have a feeling that I would be a helicopter parent if I had not been given the blessing of learning to CHILL OUT. I think I simply have to learn to balance it and make sure more things are followed through on. It is an important skill for them to learn, I just don't pretend that they should have it all mastered by now.
Thursday, November 07, 2013
Adoption Month
This will likely be all over the place. I have no idea where this will end up so please forgive my wandering.
November is National Adoption Month.
Let's state the obvious, Adoption is life changing. People focus on the sacrifice that we adopted parents make. The way we graciously open our home to an "orphan". The way we give them a better life than they would've had without us. How generous we are. Love can and will fix everything.
That, my friends, is a pile of crap.
Adoption is born from ruin. It is ugly. It is loss, something that if we were honest we wished would never have to happen. It comes from pain. It is unnatural.
All those things being true it is still wonderful and loving. It is done out of a spirit of helpfulness. It is kindness and mercy. It is a necessary evil.
It is not a decision I regret.
It is not at all what I expected. It is messy. It is hard. It is gut wrenching.
Working through the pain that my child suffered and the indelible scars they left behind is not easy. It is not generous and it does not make me a saint. It makes me a warrior. I wish there were things I never knew. I wish I didn't immediately go to "that place" when someone shares that they are pursuing adoption.
I fear that they are going in blind like we did. I fear that they are thinking they are going to have a short period of adjustment and all will be well. I fear that others in their home will be adversely effected. I fear that they will lose their ideal image of adoption. I fear that they think that most times love is enough.
And if I am honest with myself, I what I fear most is that their love will be enough while mine wasn't.
I fear that I drew the short stick and their life will be peachy. I fear that I will share a small portion of our ugly with them to try to prepare them and then the get flowers and hearts instead of stinky fish and garbage to wade through. I fear they will think I am crazy.
I also fear that I am right, and they will experience the hard part of loss. Their child will have attachment resistance and will struggle with e.v.e.r.y.t.h.i.n.g. I fear being "right" because that means another child and another family will have to wade through the muck of early trauma. I fear that their chemistry, their brain is forever altered by the loss they have experienced. I fear we will add another parent into the "trauma momma" fold and another child will have to live with the repercussions of mistakes the adults in their life have made. I fear that a child suffers.
My family has been forever changed by adoption. I have learned to be a fighter, an advocate, and a learner. My children have learned compassion and tolerance for others. I have experienced more heartache than I knew existed. I have also experienced more joy. I have friends that AMAZE me daily. I have become a part of an amazing community who hold one another up when we think we can no longer continue. I have traveled across the country to be in the presence of women who understand. I have met moms who are warriors and children who are conquerors. I have met those still deep in the battle and I have met those on the other side.
I have made mistakes. I have been forgiven. I have learned it is not about me. I have learned that no one really knows what we go through unless you live it daily. I understand that you still think I am crazy.
And that is ok.
I don't really want you to understand. I want you to reach out and help. I want you to make a meal for a family in your circle who has adopted. I want you to ask if you can take their child to a movie. I want you to understand when they pull into themselves. I want you to not give up on them when they cannot socialize as often as before. I want you NOT to say they are special, or awesome or a saint, because likely they are feeling precisely the opposite. I want you to drop by with wine and chocolate and not blink twice when the house is a disaster or smells like pee. Come over and ask to help with laundry. Ask to play catch in the yard with their child so they can take a freaking nap without being hyper vigilant.
Never forget that scars from early trauma and issues with attachment do not show on the outside. Please, for the love of all that is holy, understand that they will likely be wonderful, kind, perfect children for you because you are not the parent. You are not trying to take over that spot in their life that holds so much pain, so much loss. You are not the object of their difficulties. Please don't judge the parent when you simply can't see it. I promise they are not crazy. I promise you won't get it. And that is ok. Just know it.
November is National Adoption Month.
Let's state the obvious, Adoption is life changing. People focus on the sacrifice that we adopted parents make. The way we graciously open our home to an "orphan". The way we give them a better life than they would've had without us. How generous we are. Love can and will fix everything.
That, my friends, is a pile of crap.
Adoption is born from ruin. It is ugly. It is loss, something that if we were honest we wished would never have to happen. It comes from pain. It is unnatural.
All those things being true it is still wonderful and loving. It is done out of a spirit of helpfulness. It is kindness and mercy. It is a necessary evil.
It is not a decision I regret.
It is not at all what I expected. It is messy. It is hard. It is gut wrenching.
Working through the pain that my child suffered and the indelible scars they left behind is not easy. It is not generous and it does not make me a saint. It makes me a warrior. I wish there were things I never knew. I wish I didn't immediately go to "that place" when someone shares that they are pursuing adoption.
I fear that they are going in blind like we did. I fear that they are thinking they are going to have a short period of adjustment and all will be well. I fear that others in their home will be adversely effected. I fear that they will lose their ideal image of adoption. I fear that they think that most times love is enough.
And if I am honest with myself, I what I fear most is that their love will be enough while mine wasn't.
I fear that I drew the short stick and their life will be peachy. I fear that I will share a small portion of our ugly with them to try to prepare them and then the get flowers and hearts instead of stinky fish and garbage to wade through. I fear they will think I am crazy.
I also fear that I am right, and they will experience the hard part of loss. Their child will have attachment resistance and will struggle with e.v.e.r.y.t.h.i.n.g. I fear being "right" because that means another child and another family will have to wade through the muck of early trauma. I fear that their chemistry, their brain is forever altered by the loss they have experienced. I fear we will add another parent into the "trauma momma" fold and another child will have to live with the repercussions of mistakes the adults in their life have made. I fear that a child suffers.
My family has been forever changed by adoption. I have learned to be a fighter, an advocate, and a learner. My children have learned compassion and tolerance for others. I have experienced more heartache than I knew existed. I have also experienced more joy. I have friends that AMAZE me daily. I have become a part of an amazing community who hold one another up when we think we can no longer continue. I have traveled across the country to be in the presence of women who understand. I have met moms who are warriors and children who are conquerors. I have met those still deep in the battle and I have met those on the other side.
I have made mistakes. I have been forgiven. I have learned it is not about me. I have learned that no one really knows what we go through unless you live it daily. I understand that you still think I am crazy.
And that is ok.
I don't really want you to understand. I want you to reach out and help. I want you to make a meal for a family in your circle who has adopted. I want you to ask if you can take their child to a movie. I want you to understand when they pull into themselves. I want you to not give up on them when they cannot socialize as often as before. I want you NOT to say they are special, or awesome or a saint, because likely they are feeling precisely the opposite. I want you to drop by with wine and chocolate and not blink twice when the house is a disaster or smells like pee. Come over and ask to help with laundry. Ask to play catch in the yard with their child so they can take a freaking nap without being hyper vigilant.
Never forget that scars from early trauma and issues with attachment do not show on the outside. Please, for the love of all that is holy, understand that they will likely be wonderful, kind, perfect children for you because you are not the parent. You are not trying to take over that spot in their life that holds so much pain, so much loss. You are not the object of their difficulties. Please don't judge the parent when you simply can't see it. I promise they are not crazy. I promise you won't get it. And that is ok. Just know it.
Subscribe to:
Posts (Atom)