It was post Christmas and being the sweet lover that I am I knew it was time to start getting some motivation to lose the 5 lbs (or more!) that November and December always add on to me. I was confident in Jillian and her 30 day shred to get me well, shredded and back to 125lbs in no time. I started early, knowing my body was a year older and that it would not be easy. I was dedicated and even though many days I felt like throwing the towel in I made it to level 2 and was somehow 23 days in. I knew I felt stronger but my abdomen and energy were in the toilet. I was utterly exhausted and couldn't believe that choosing "JOY" (see previous post) and working out were only making my energy sink lower and lower. I thought nothing of it and proceeded to beg my midwife for one more month of birth control so I could make it through vacation before needed to have the yearly checkup we women enjoy so much. ;) Ha, she kindly obliged and just asked that I take a precautionary pregnancy test before starting them. You see, we had decided in July to stop the pill and just see where the year took us. If we got pregnant, yeah, it was meant to be, if we didn't well-yeah, we are blessed with a brown-haired, brown-eyed boy and a blonde-haired, blue-eyed girl. Come November after the utter devastation that was ALS entering our lives we had a conversation about being done and I started the last 21 days of pills I could find in my cupboard. I was so depressed and so overwhelmed with life that I could not fathom bringing another life into the mess that was grief and heartache. I have never been real good at taking the pill and I know I missed a night or two but after struggling to conceive both kids didn't think anything of it. I even proceeded to bring up the "V" word (vasectomy) in January because why be on hormones if I don't need to be?! Anyways, I took the test January 29th and I almost hit the floor in shock and awe. Turns out we are pregnant. SURPRISE! Surprise just barely touches the surface of the utter shock I felt. I had closed the book on that chapter of life. I was moving forward confidently er not always so confidently but resolving to be confident in the closure. I had many talks with different friends about it and my response was always the same, "I'm already in over my head, I'm sad to be done but it's for the best and we don't really want to start over now." And honestly, my sister only has one so I knew at the least one more baby would be in our futures that we could hold and love on and then give back!
After weeks of not really eating, drinking more than I ever have and intentionally ordering drinks at restaurants and stopping to buy wine for consumption after the kids went to bed I was in a total panic about what the heck I had done to this baby. I was already 8.5 weeks in and had done nothing healthy in regards to myself except for working out. I had taken no vitamins, was drinking caffeine like my life depended on it and was lucky if I choked in a bite or two of dinner. All of this was calmly and confidently pushed aside from my midwife who assured me that if the baby was still in there and doing good that I was okay as long as I started making pushes now to get on a healthy track. I heard the heartbeat yesterday at 10.5 weeks, 150 BPM and strong. I left with no ultrasound but have my first one March 4th. We are due to have our third baby September 12th. Just 10 days after we send our first baby to Kindergarten.
To say this is a sign for us is a given. Where there is grief and heartache over the future, He says there is joy and excitement for tomorrow. Where there is pain and regret over how fast time has flied with one child, He says there is still today with that child and even more I am giving you the chance the do it all again. When you think you have life figured out, He says, NO, I do, rest soundly in my assurance that I am in charge and you will not be given more than you can handle. This was a direct answer to my prayer of taking away the pain and replacing it with joy. I have never felt so taken care of before. It amazes me that just weeks ago the future was black and now it's bright. It's still shocking, I mean we forget sometimes and have to remind ourselves that this is real. Florida was interesting, I was so excited to do the rides until I remembered, "if you are pregnant, you should not ride". I was so excited about the seafood, oops, no shellfish well you are pregnant. I was so excited for margaritas and sunshine until I remembered, no drinking while pregnant. I almost ordered a margarita until I had a mental head slap that I was, surprise pregnant. We've told the kids and my family. Riley is excited, Alyssa got a little weepy but she is onboard and excited to be the little mama come fall.
We think it's a boy but only because we always envisioned one more boy if ever it happened. If it's a girl or a boy it's an absolute miracle and we'll take it.
I feel at times completely overwhelmed at the thought of three and at the same time so lucky to get to do it all again. I have honestly loved pregnancy with both kids and giving birth is so fun and such a rush. Who cares that it hurts a little, it's the best kind of pain when it's all said and done. We are trying to figure out where we are going to house the little babe and we think Riley will move down to the 3rd level with some persuasion of bunk beds or a built in bed with a fort/desk area underneath. We've thought about moving Lyssi and Riley in together and I like that idea but I love her room so much and I just don't want to change it already. Although some of my best memories are sharing a room with my sister and I think they would really like it. I know after carrying my Lu around that 40 weeks goes by faster and faster each time. This time it will be during Derrick's very busy season and it will be a challenge but I am hoping after I hit 12 weeks some energy will reappear and I'll feel almost human again.
Life certainly gives you whiplash and when you least expect it. It's beautiful and painful and always, always you can find joy when you think it's all but lost. Baby #3 is a testament to that. Our beautiful reminder that life goes on.
Whew, it feels good to get that out, we have bursting since January 29th, absolutely bursting with this surprise news. I have never wanted to blurt out pregnancy news before like I have with this one.
I will find some time soon here to type out some thoughts on our vacation. It was so good and so tiring and so fun. I have a few ;) pictures to go through and then I want to get it down for memories sake while the emotions and highs are so fresh.
Love and unexpected joys to you today and tomorrow!
Life will look alot differently come this fall than it did last fall!
Thursday, February 20, 2014
Monday, January 13, 2014
Darkness lifted
When I look back on the last few months of last year all I see is utter despair and gut wrenching heartache. I take note that I needed that time to grieve and grow at the same time. Sadness still finds me but it's a far cry from what it was even a week or two ago. I have been lifted out of that darkness by my Mom especially but by my personal devotion time and through the devotion and love that has been shown to her and our family. It is absolutely inspiring to see and feel that we are not alone in this. We are not alone in the pain or shock. We are not alone in being resolute to finding a way around this. I will expound on that a little later.
I remember the start of 2013 clearly. I had just gone back to work on the 2nd, a day earlier than I should have after my Mom had some surgery. I was quite bitter about it and on my way home I rear ended a work truck in front of me because of icy roads and one of those complete slam on the brake sudden stops that 169 is so famous for. How a highway can all of a sudden come to a complete stop right when you get over a hill is beyond me but it was done. I had smacked him and his truck was fine, Derrick's Corolla was not. I was so mad and so scared that I lashed out. It was all Derrick's fault for making me go back to work and this was his birthday, he should have just let me stay home and make a nice dinner. Now 2 hours later in freezing temps I was still sitting in a freezing cold car waiting to be picked up. I could not and would not go into the tow shop because I could just envision the stares from the men about the "stupid" woman who was paying no attention and obviously following too closely to care. When D finally did arrive we were utterly silent. He knew that I was blaming him and because of the person he is he just didn't go there. We spent the next two days in total silence. Ha, can you imagine how awkward it is to move around your new house, try to find things, care for your children together and then go to bed together and still not be talking? I look back on that and just find nothing but Grace. My husband is the most forgiving person I know. He bends over backward to just make things better and stays calm all the while I act a fool. I completely ruined our car, his birthday and the start of a fresh new year. I had so much anger that I couldn't just take it out on myself, it branched out to everyone around me. This was also about the time that my Mom just couldn't seem to muster up any energy. She was exhausted after having the kids for 3.5-4 hours and many times I would rush over there at 12:30 and round them up as fast as I could to be on my way home by 12:40. I kept that up for months. I couldn't understand her change and I was mad about it. Mad enough that I was silent again about it. I let things snowball and eventually we came to a blowout, I believe more than once. I never stopped and listened. I never looked beyond my own circumstance to really, really care what her's might have been. That again is my biggest challenge in life and my biggest regret. I can look back now and see that although 2013 was trying and at times frustrating, it ended with such love and shared passion.
The prospect of a fresh new year for 2014 scared me to the core. I was jealous that everyone else had a fresh, clean slate to look forward to and we had a stained slate full of uncertainties and pain. Each new day potentially bringing us farther and farther away from the woman we knew as Mom. I looked into the future and projected it's appearance. I did this for a few days and then my mind and body just couldn't do it anymore. I started feeling urges and prayers started breaking through my thick head. I had to sit down and do a bible study. I had to start believing, really believing. I had to keep living, enough so that smiling and laugher were the norm, not tears and being alone. When you start to actually glimpse the face of Christ and allow Him to honestly infiltrate your life there is no doubt that a peace that surpasses all understanding finds you. I've never had to do this at 31. I have lived a safe, easy life. The simple, childlike Bible stories were enough for me. I am surrounding myself with glimpses of Heaven. A great book that my husband finally read after years of me telling him he should is "Forever Ours", Real stories of immortality and living from a forensic pathologist. Janis Amatuzio, MD. It is so well written and so compelling. I have read it at least 3 times but this 4th time I feel it. I feel the anticipation and excitement for Heaven. I believe that God's plan is greater than ALS for my Mom. I believe that He can heal her. I believe he is using this to His glory and I have finally stepped in line with that. I also now know that if she does perish any sooner than I thought (95) I will be okay. I will be able to pick myself up and I will see her again. In my dreams, in the stars, in the clouds, in Heaven. No, this does not make everyday so easy but this life will never be easy. That is why you surround yourself with people that have your back when you falter. The day after Christmas Boston's in CR held it's ALS fundraiser with 10% of all food orders going to the ALSA. My Mom's dear friend Jan organized it by sending massive emails out and spreading the word. We walked into the restaurant that night and were surrounded by friends and family. It was overwhelming in a good way. Jan had made necklaces that either had our family picture on it or said "We Love the Hutchinson's". My Alyssa thought Grandma was a celebrity along with her little friend Mila. Every minute someone new seemed to walk through the door. All in all, 83 total people showed up with some kind of connection to my Mom. Some of my dearest friends showed up, Tim, Deb and his whole family, Keith, Sica and Mila, Jeff, Apryl, Avery, and Eric, Kim, Luke, Carter and Graham, Rob, Carrie, Logan and Layla. Countless dear friends to my parents and all the while I watched my Dad shine and feed off of the support that was lavishly handed out to us that night. All it took was showing up and just saying "hi". No words were needed. No sympathies, no awkward pauses. All they did was show up and it said everything to us.
Right now the most common question I receive is "how is your Mom doing?" Honestly, I answer with "really good, she is strong in mind, body and faith." What I have been listening to now is the nitty gritty. She struggles with frequent muscle cramps all over her body, especially her legs and her abdomen. When she finally lays down at night, her muscles twitch and dance all over making it nearly impossible to fall asleep or stay asleep. She has told me that she tires easily and that she can tell when she overdoes immediately. She always has to use the handrails on the stairs. These are very specific prayers that we are adjusting to now. Life isn't the same as it was just a year or so ago. Birthday dinners are now cut down to just the birthday person and their family because she just can't do big, elaborate dinners anymore. And while this was too scary to face just a few weeks ago, I feel strong in knowing now. I feel more compassion and more responsibility to do life better. Not just towards my Mom but to everyone that I call "friend" in life. It's time that I make meaningful connections of my own, ones that require leaving my safe little box that is now 9101 168th Ave.
We went up north and rented a cabin for my birthday this year and I noted to my husband how very adult I felt. I mean, my parents weren't with us! Ha, he quickly noted that we did invite them, they just weren't able to come. I will always want my parents close by. That is reality for most of us. If ALS progresses and starts to tear my Mom down more, it will not be easy, there will be very dark days. There will be self pity and more grieving. I just don't envision them as I did a week ago, it's not just my Dad, Mom, Sister, Brother and I facing this. It's a strong village that seems to come through at just the right moments. It is being held by a mighty hand. It is making a very conscientious choice to live for TODAY, for these three.
I remember the start of 2013 clearly. I had just gone back to work on the 2nd, a day earlier than I should have after my Mom had some surgery. I was quite bitter about it and on my way home I rear ended a work truck in front of me because of icy roads and one of those complete slam on the brake sudden stops that 169 is so famous for. How a highway can all of a sudden come to a complete stop right when you get over a hill is beyond me but it was done. I had smacked him and his truck was fine, Derrick's Corolla was not. I was so mad and so scared that I lashed out. It was all Derrick's fault for making me go back to work and this was his birthday, he should have just let me stay home and make a nice dinner. Now 2 hours later in freezing temps I was still sitting in a freezing cold car waiting to be picked up. I could not and would not go into the tow shop because I could just envision the stares from the men about the "stupid" woman who was paying no attention and obviously following too closely to care. When D finally did arrive we were utterly silent. He knew that I was blaming him and because of the person he is he just didn't go there. We spent the next two days in total silence. Ha, can you imagine how awkward it is to move around your new house, try to find things, care for your children together and then go to bed together and still not be talking? I look back on that and just find nothing but Grace. My husband is the most forgiving person I know. He bends over backward to just make things better and stays calm all the while I act a fool. I completely ruined our car, his birthday and the start of a fresh new year. I had so much anger that I couldn't just take it out on myself, it branched out to everyone around me. This was also about the time that my Mom just couldn't seem to muster up any energy. She was exhausted after having the kids for 3.5-4 hours and many times I would rush over there at 12:30 and round them up as fast as I could to be on my way home by 12:40. I kept that up for months. I couldn't understand her change and I was mad about it. Mad enough that I was silent again about it. I let things snowball and eventually we came to a blowout, I believe more than once. I never stopped and listened. I never looked beyond my own circumstance to really, really care what her's might have been. That again is my biggest challenge in life and my biggest regret. I can look back now and see that although 2013 was trying and at times frustrating, it ended with such love and shared passion.
The prospect of a fresh new year for 2014 scared me to the core. I was jealous that everyone else had a fresh, clean slate to look forward to and we had a stained slate full of uncertainties and pain. Each new day potentially bringing us farther and farther away from the woman we knew as Mom. I looked into the future and projected it's appearance. I did this for a few days and then my mind and body just couldn't do it anymore. I started feeling urges and prayers started breaking through my thick head. I had to sit down and do a bible study. I had to start believing, really believing. I had to keep living, enough so that smiling and laugher were the norm, not tears and being alone. When you start to actually glimpse the face of Christ and allow Him to honestly infiltrate your life there is no doubt that a peace that surpasses all understanding finds you. I've never had to do this at 31. I have lived a safe, easy life. The simple, childlike Bible stories were enough for me. I am surrounding myself with glimpses of Heaven. A great book that my husband finally read after years of me telling him he should is "Forever Ours", Real stories of immortality and living from a forensic pathologist. Janis Amatuzio, MD. It is so well written and so compelling. I have read it at least 3 times but this 4th time I feel it. I feel the anticipation and excitement for Heaven. I believe that God's plan is greater than ALS for my Mom. I believe that He can heal her. I believe he is using this to His glory and I have finally stepped in line with that. I also now know that if she does perish any sooner than I thought (95) I will be okay. I will be able to pick myself up and I will see her again. In my dreams, in the stars, in the clouds, in Heaven. No, this does not make everyday so easy but this life will never be easy. That is why you surround yourself with people that have your back when you falter. The day after Christmas Boston's in CR held it's ALS fundraiser with 10% of all food orders going to the ALSA. My Mom's dear friend Jan organized it by sending massive emails out and spreading the word. We walked into the restaurant that night and were surrounded by friends and family. It was overwhelming in a good way. Jan had made necklaces that either had our family picture on it or said "We Love the Hutchinson's". My Alyssa thought Grandma was a celebrity along with her little friend Mila. Every minute someone new seemed to walk through the door. All in all, 83 total people showed up with some kind of connection to my Mom. Some of my dearest friends showed up, Tim, Deb and his whole family, Keith, Sica and Mila, Jeff, Apryl, Avery, and Eric, Kim, Luke, Carter and Graham, Rob, Carrie, Logan and Layla. Countless dear friends to my parents and all the while I watched my Dad shine and feed off of the support that was lavishly handed out to us that night. All it took was showing up and just saying "hi". No words were needed. No sympathies, no awkward pauses. All they did was show up and it said everything to us.
Right now the most common question I receive is "how is your Mom doing?" Honestly, I answer with "really good, she is strong in mind, body and faith." What I have been listening to now is the nitty gritty. She struggles with frequent muscle cramps all over her body, especially her legs and her abdomen. When she finally lays down at night, her muscles twitch and dance all over making it nearly impossible to fall asleep or stay asleep. She has told me that she tires easily and that she can tell when she overdoes immediately. She always has to use the handrails on the stairs. These are very specific prayers that we are adjusting to now. Life isn't the same as it was just a year or so ago. Birthday dinners are now cut down to just the birthday person and their family because she just can't do big, elaborate dinners anymore. And while this was too scary to face just a few weeks ago, I feel strong in knowing now. I feel more compassion and more responsibility to do life better. Not just towards my Mom but to everyone that I call "friend" in life. It's time that I make meaningful connections of my own, ones that require leaving my safe little box that is now 9101 168th Ave.
We went up north and rented a cabin for my birthday this year and I noted to my husband how very adult I felt. I mean, my parents weren't with us! Ha, he quickly noted that we did invite them, they just weren't able to come. I will always want my parents close by. That is reality for most of us. If ALS progresses and starts to tear my Mom down more, it will not be easy, there will be very dark days. There will be self pity and more grieving. I just don't envision them as I did a week ago, it's not just my Dad, Mom, Sister, Brother and I facing this. It's a strong village that seems to come through at just the right moments. It is being held by a mighty hand. It is making a very conscientious choice to live for TODAY, for these three.
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| My nephew Jaxson. |
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| My sweetheart. |
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| My comic relief. |
Thursday, December 26, 2013
Christmas is the time...
Christmas. I blanked big time this year. I don't think I bought but 2 gifts and I left the rest to my husband. He cooked, he bought, he helped wrap. I don't have the ability to work up the energy or the thought to put up much effort for most things this year but in that realization I found peace and contentment. You don't need to put as much energy and time into it as you think you do. I enjoyed the time we spent together as a family. I enjoyed just sitting together and being comfortable and happy in the love that surrounds us.
We did good this year. We didn't go overboard and the kids are happy and enjoying the fun gifts they got instead of being overwhelmed and scatter brained with too much. We have most of it taken out and it has a spot in the toy room already. They did great with the schedule being thrown out the window and no naps. They slept long and hard last night and are refreshed and happy this morning. I don't want to go anywhere and I don't want to do much besides eventually hop in the shower and relax.
We had family here yesterday until 6:00ish and it was good. The kind of comfortability that found everyone on separate levels just enjoying a quiet conversation with eachother. Cousins played so nicely together and even geared up in all their winter stuff to enjoy some sledding behind the four wheeler. By about 5:00 I was ready to get out of my jeans. I realize that wearing scrubs for work and then coming home to sweatpants makes me very unprepared for wearing real clothes for any length of time. I suppose that the overeating and indulging over the last few days didn't do much to help that either.
I appreciated the concern and genuine heartache so many showed for our situation. Every hug and every comment just really stays on my heart and in my head. I go to them in the dark moments and replay them when I pity myself for being so alone and heartbroken. Days are getting easier. I have realized that I am not one to push ALS out of my head. I am one to ponder it and let myself cry over the reality of it whenever that may come up. It usually comes up when I drive. I listen to music in the car and I cry, not the gut wrenching pain that makes life seem impossible but the quiet, prayerful kind that reminds me that life is full of pain. I get to my destination, pull it together and smile at my patients or my coworkers. There is a constant tug on my heart and ignoring it is not the right way for me to deal with it. Sometimes talking through it works but mostly I am a private pain kind of person and writing things down or reading helps. You don't even have to mention much more than the fact that you are thinking and praying for us. My kids are huge helpers. My Alyssa is the most loving, caring little soul I know. She always tells us how much she loves her family and she reflects and vocalizes that she is so happy. At Christmas on Tuesday she had a plate of fruit and she brought it over to the table and said aloud "I am going to sit by my Mommy because I love her." In the mornings when I am home she runs into my room and snuggles with me and tells me how much she missed me while she slept. Just a small peak at her spirit. My Riley is a glass half full kind of dude. There is little that gets him down and I look to him for the reminders that life is good. He always write his name with a smiley face in the R, the dot of the I and the E. One day he didn't really put a huge smile on the little faces more of a half smile line. I asked him why and he said "because today was good, it wasn't like super exciting or super fun just good and I got in trouble a little bit." So even when the day doesn't make you do cartwheels and sing Hallelujah, it's still worth smiling about and still worth appreciating.
I go back to work on Monday part time. It's not how or why I wanted to achieve part time but it's part time. No, life will not be so easy nor perfect because I am home by 9:10. I still have 5 or so hours of hard work at a very early hour and that never includes a break. I will come home to my children who are revved up and at their peak for the day while I have already been up for 6 or more hours. I will plan to see my Mom 3-4-5 days out of every week. Although it never disappears from my mind that I am going to PT for her. I will never regret being given the gift of more time with her or my kids. At the same time I will never forget that this disease is in the shadows, quietly taking more and more until, what? I would trade working PT in for FT the rest of my life if it could just go back to last year at this time. Happily ignorant of the pain and heartache that lies ahead.
I have always been sensitive to the pain and sorrow around me. I don't watch the news because it hurts to bad to see the world highlighted and illuminated in death and anger. Just when you think that this world could not get any more broken you hear that someone shot up a kindergarten, that a very young girl killed herself, that a 3 year old child died of an enlarged heart, a baby was shaken to death. This world is looking for something. I know that one day every beating heart will face the same way, heads down, hands held up high. It is my prayer that He finds His way into your heart. I am seeing just what real faith and love is all about. I realize it is easy to believe when life is good. It is much harder to grow up and ask the hard questions and realize that we will never know the answer until we reach heaven and then we won't hardly care anymore. I know heaven is real. I know that we are going there one day. Why then does it hurt so much to think of someone I love going there sooner rather than later? I struggle with that these days. I want heaven for each of you just not anytime soon. I want you to claim that mansion that was built for you specifically. I want to sing and hug in heaven, the human side of me just selfishly wishes He would make everything easy and clean for us down here and then take us up there. It's so easy for me to believe in God. Maybe because I was raised in it, maybe because I birthed 2 children and I can't even explain the miracle that it was without having Him in the equation. Maybe because there is moments where I actually feel him carrying me through a moment where I feel so debilitated and so inadequate. I don't think it matters why but rather just that I do. I have definitely had some shaky moments with Him this year. I have questioned Him and I then conceded that I will just never understand. I think we need to keep things as basic and as black and white as we can. It's when we probe and question that we start to make up things that were never really there. God created the world in 7 days, He made man and then woman as mans perfect partner. They sinned and the world has been broken ever since. Sin was born and gets worse and more barbaric and ugly everyday. He destroyed the whole the world in the great flood because of sin. He gave very basic, very simple and straightforward rules in the 10 commandments. He then sent His Son, so He would come face to face with what we deal with everyday. He sees the brokenness and shame. The devil has an easy stronghold these days. We are swindled and sold into the gray more and more everyday. It's time to shut it all off and just listen. Be still, your heart will beat you the answers you need. And when you can't discern the message He has sent those of us around you to pick you up and reassure you that you are not alone. You were not meant to be here, your home is out there and it is eternal, sealed with grace and mercy. My favorite lyrics from The Story "I'm with You".
We could shake our fists
In times like this
When we don't understandOr we could just hold hands
Many do not know much about ALS. Most of my family and friends had to google it to see what it was. A few went above and beyond by sending my Mom notes of encouragement and hope. My SIL Sheri (I didn't ask her to include this but I hope she won't mind) sent the nicest card explaining that her Mother and my own reflect eachother so much in their selflessness and care for their children and now grandchildren. She went on to explain that she did not know much about ALS but decided to buy a book so she could get a glimpse of the future for my family. She sent the book to my Mom "Until I say Goodbye." Susan Spencer Wendel. I think it was the first time that my Mom allowed herself to really look at the future and cry in the face of it. I was happy to share tears with her over the sucky situation that is hers.
I feel so indebted to so many people. You've held me up. I wish I could be that role model of outstanding faith and hope. Instead, I'm going to need help with that. You've opened my eyes.
Jamming out to The Afters, Broken Hallelujah right now. Realizing that life is one big corn maze. We keep our eye on those we love and above. Always, always stumbling and regaining our balance.
We did good this year. We didn't go overboard and the kids are happy and enjoying the fun gifts they got instead of being overwhelmed and scatter brained with too much. We have most of it taken out and it has a spot in the toy room already. They did great with the schedule being thrown out the window and no naps. They slept long and hard last night and are refreshed and happy this morning. I don't want to go anywhere and I don't want to do much besides eventually hop in the shower and relax.
We had family here yesterday until 6:00ish and it was good. The kind of comfortability that found everyone on separate levels just enjoying a quiet conversation with eachother. Cousins played so nicely together and even geared up in all their winter stuff to enjoy some sledding behind the four wheeler. By about 5:00 I was ready to get out of my jeans. I realize that wearing scrubs for work and then coming home to sweatpants makes me very unprepared for wearing real clothes for any length of time. I suppose that the overeating and indulging over the last few days didn't do much to help that either.
I appreciated the concern and genuine heartache so many showed for our situation. Every hug and every comment just really stays on my heart and in my head. I go to them in the dark moments and replay them when I pity myself for being so alone and heartbroken. Days are getting easier. I have realized that I am not one to push ALS out of my head. I am one to ponder it and let myself cry over the reality of it whenever that may come up. It usually comes up when I drive. I listen to music in the car and I cry, not the gut wrenching pain that makes life seem impossible but the quiet, prayerful kind that reminds me that life is full of pain. I get to my destination, pull it together and smile at my patients or my coworkers. There is a constant tug on my heart and ignoring it is not the right way for me to deal with it. Sometimes talking through it works but mostly I am a private pain kind of person and writing things down or reading helps. You don't even have to mention much more than the fact that you are thinking and praying for us. My kids are huge helpers. My Alyssa is the most loving, caring little soul I know. She always tells us how much she loves her family and she reflects and vocalizes that she is so happy. At Christmas on Tuesday she had a plate of fruit and she brought it over to the table and said aloud "I am going to sit by my Mommy because I love her." In the mornings when I am home she runs into my room and snuggles with me and tells me how much she missed me while she slept. Just a small peak at her spirit. My Riley is a glass half full kind of dude. There is little that gets him down and I look to him for the reminders that life is good. He always write his name with a smiley face in the R, the dot of the I and the E. One day he didn't really put a huge smile on the little faces more of a half smile line. I asked him why and he said "because today was good, it wasn't like super exciting or super fun just good and I got in trouble a little bit." So even when the day doesn't make you do cartwheels and sing Hallelujah, it's still worth smiling about and still worth appreciating.
I go back to work on Monday part time. It's not how or why I wanted to achieve part time but it's part time. No, life will not be so easy nor perfect because I am home by 9:10. I still have 5 or so hours of hard work at a very early hour and that never includes a break. I will come home to my children who are revved up and at their peak for the day while I have already been up for 6 or more hours. I will plan to see my Mom 3-4-5 days out of every week. Although it never disappears from my mind that I am going to PT for her. I will never regret being given the gift of more time with her or my kids. At the same time I will never forget that this disease is in the shadows, quietly taking more and more until, what? I would trade working PT in for FT the rest of my life if it could just go back to last year at this time. Happily ignorant of the pain and heartache that lies ahead.
I have always been sensitive to the pain and sorrow around me. I don't watch the news because it hurts to bad to see the world highlighted and illuminated in death and anger. Just when you think that this world could not get any more broken you hear that someone shot up a kindergarten, that a very young girl killed herself, that a 3 year old child died of an enlarged heart, a baby was shaken to death. This world is looking for something. I know that one day every beating heart will face the same way, heads down, hands held up high. It is my prayer that He finds His way into your heart. I am seeing just what real faith and love is all about. I realize it is easy to believe when life is good. It is much harder to grow up and ask the hard questions and realize that we will never know the answer until we reach heaven and then we won't hardly care anymore. I know heaven is real. I know that we are going there one day. Why then does it hurt so much to think of someone I love going there sooner rather than later? I struggle with that these days. I want heaven for each of you just not anytime soon. I want you to claim that mansion that was built for you specifically. I want to sing and hug in heaven, the human side of me just selfishly wishes He would make everything easy and clean for us down here and then take us up there. It's so easy for me to believe in God. Maybe because I was raised in it, maybe because I birthed 2 children and I can't even explain the miracle that it was without having Him in the equation. Maybe because there is moments where I actually feel him carrying me through a moment where I feel so debilitated and so inadequate. I don't think it matters why but rather just that I do. I have definitely had some shaky moments with Him this year. I have questioned Him and I then conceded that I will just never understand. I think we need to keep things as basic and as black and white as we can. It's when we probe and question that we start to make up things that were never really there. God created the world in 7 days, He made man and then woman as mans perfect partner. They sinned and the world has been broken ever since. Sin was born and gets worse and more barbaric and ugly everyday. He destroyed the whole the world in the great flood because of sin. He gave very basic, very simple and straightforward rules in the 10 commandments. He then sent His Son, so He would come face to face with what we deal with everyday. He sees the brokenness and shame. The devil has an easy stronghold these days. We are swindled and sold into the gray more and more everyday. It's time to shut it all off and just listen. Be still, your heart will beat you the answers you need. And when you can't discern the message He has sent those of us around you to pick you up and reassure you that you are not alone. You were not meant to be here, your home is out there and it is eternal, sealed with grace and mercy. My favorite lyrics from The Story "I'm with You".
We could shake our fists
In times like this
When we don't understandOr we could just hold hands
Many do not know much about ALS. Most of my family and friends had to google it to see what it was. A few went above and beyond by sending my Mom notes of encouragement and hope. My SIL Sheri (I didn't ask her to include this but I hope she won't mind) sent the nicest card explaining that her Mother and my own reflect eachother so much in their selflessness and care for their children and now grandchildren. She went on to explain that she did not know much about ALS but decided to buy a book so she could get a glimpse of the future for my family. She sent the book to my Mom "Until I say Goodbye." Susan Spencer Wendel. I think it was the first time that my Mom allowed herself to really look at the future and cry in the face of it. I was happy to share tears with her over the sucky situation that is hers.
I feel so indebted to so many people. You've held me up. I wish I could be that role model of outstanding faith and hope. Instead, I'm going to need help with that. You've opened my eyes.
Jamming out to The Afters, Broken Hallelujah right now. Realizing that life is one big corn maze. We keep our eye on those we love and above. Always, always stumbling and regaining our balance.
Saturday, November 30, 2013
Mercy
I ran into the oddest off all devotional notes today and after having a sleepover with my loving, sincere, sweet 2 year old I feel refreshed. The sleeping pill kicked in and we were in bed by 9 but not until I watched the NFL networks "A Football Life" on Steve Gleason. Talk about a craphole hand he's been dealt. Derrick warned me not to watch it. I did it anyways. It was nothing that I didn't already picture in my nightmares and honestly I needed to watch it. I needed to face the fear head on and not blink. Basically what I got out of it was that life could be a whole hell of alot worse. He was diagnosed in 2011 when he was around 35. Now in 2013, he is wheel chair bound with no speech capabilities except electronically and no movement in any of his limbs. It was painful and it was hard to watch but he brought me back to reality. The reality is that this disease sucks. The reality is that this is an underfunded, under researched disease. The reality is that this disease has knows no boundaries. It takes the young, the old, the middle aged, it takes all races and all diversities. Are you kidding me right now that in this day and age they can't find a link or a cause? Are you kidding me that the plan of attack is to enjoy each day.
My notes from the book Captivating were sitting on the counter this morning. Derrick probably took them out of the junk drawer to find something else but these words kicked me hard. "Live in the present. Our future as we imagine it is dictated by fear and rarely includes God. We try to take control over something we can't. The future isn't even real, making plans and contingencies stops us from living in the love of today. I went on to note that "don't ever assume that using something means God caused it. He doesn't need it to accomplish His purpose. Grace doesn't depend on suffering-where there is suffering you will find Grace."
So today I resolve to live for today. Today might be crappy and hard but anything that is worth it isn't any different. I urge you to take a look at http://www.teamgleason.org.
My notes from the book Captivating were sitting on the counter this morning. Derrick probably took them out of the junk drawer to find something else but these words kicked me hard. "Live in the present. Our future as we imagine it is dictated by fear and rarely includes God. We try to take control over something we can't. The future isn't even real, making plans and contingencies stops us from living in the love of today. I went on to note that "don't ever assume that using something means God caused it. He doesn't need it to accomplish His purpose. Grace doesn't depend on suffering-where there is suffering you will find Grace."
So today I resolve to live for today. Today might be crappy and hard but anything that is worth it isn't any different. I urge you to take a look at http://www.teamgleason.org.
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