 |
| For some reason those are the only words that came to mind when I looked at this picture. |
Wednesday, March 14, 2012
Whachu Talking Bout Willis?
Tuesday, March 6, 2012
Rare Disease Day
Everyone has a story. And when you see them walking down the street or in the grocery store or eating at a restaurant you have no idea what they've lived. Right after we got our diagnosis I found myself getting angry or bitter when I felt others didn't 'understand' our situation. I had taken the girls to a playplace so Ava could meet up with her friends. We had brought lunch and were planning on eating then playing. We sat down and I started getting the food ready to feed Emmy when a lady who worked at the place came over. She informed us that we needed to eat upstairs in the loft area.
Soooo... I have a kid in a stroller and there is no elevator. She's fussy because she's hungry but I can't just hand her a bag of crackers and let her feed herself. I'm pregnant and can't carry the stroller with Emmy up the stairs so she needs to get out and walk up the stairs which is difficult for her to do. I didn't want to say anything to the lady about Emmy's limitations. I knew we'd have to go eat in another area where we weren't able to see the playplace and I couldn't keep an eye on Ava. Ok. We need to eat so up the stairs we go. I get Emmy out of the stroller and hold her under her arms and start trying to get her to lift her feet for each step. She's not happy and starts hitting herself, biting and screaming. Lovely. Now all of the families eating in the loft area have turned their attention to us. We make it to the top and I start feeding Emmy so she calms down. Ava and her pals rush through lunch and head back down to play while Emmy and I stay up in the loft for a while watching and eating. In my head I'm cursing the lady who made us come up here. I'm sure she had no idea what it's like to care for someone who can't do things for herself. The feelings were compounded by the fact that all the kids were having a blast and Emmy couldn't get in there to play. I sat up there stewing for a while. My friend was down by the playplace chatting with the lady who worked there. Later in the parking lot my friend told me the lady had been asking about Emmy. The lady had shared that she had taken custody of a friend's severly autistic adult daughter after her friend had passed away. She was talking about how challenging it can be and wondered about Emmy's situation. It then hit me. I was judging this lady...so certain she had no idea what it would be like to live with Rett Syndrome when in fact she was going home to a very similar situation everyday.
So often I found myself looking at others in the same light. I would see families with their three healthy children and wondered if they knew how lucky they were. They didn't have to watch their children suffer...what a gift. I was sharing my feelings with my mom one day and she said, "Well look at your brother's family. Seeing them now you would never know what they've lived through." This is so very true. They now have three, beautiful, healthy, hilarious sons but it wasn't an easy road.
See, unfortunatly our family has been touched by more than one rare disease. My brother and his wife lost two sons to a rare disease called "Gauchers". It is a genetic disease, like Rett, but it is hereditary. Each child they had, had a 25% chance of having this disease. Since February 29th was rare disease day I wanted to share their story. I have found that when others share their stories with me it gives me such a greater understanding of life and it's challenges. It makes me feel like I'm not alone living in this world of the unknown. And, it always reminds me that we are stronger than we'll ever really know.
Kyle and Bek's Story
When our second son was born, we thought our family was complete. It is hard to remember back to that, to before we were marked, changed. Colleen sometimes asks "Do you still feel it?"... I am never quite sure how to answer, yes, you always feel it...but it changes, spirals, you feel different parts and a distance grows...the feeling changes. It can still knock you down, but the quality is different, you rest in it, digest it again.
When our second child Ezra was 4 months old he started coughing. He was sitting up , and we even got to hear his laugh once but the cough never went away, I was so exhausted and so worried, I must have gone to our doctor 5 times in 5 weeks, they finally basically told me to stop calling. I also noticed a neck retraction which led me to bring him to a chiropracter who at least listened to me and seemed concerned about him. She could see what I was saying when I insisted "something was going on".
By the time he was 8 months old he could no longer sit, the cough and neck retraction where worse...and then suddenly, he stopped baring weight. He just lost his connection to his feet. It was about this time that I saw a picture of him at 6 months...He was clearly bigger than the child I now held in my arms.
We went back to the doctors and I was stunned at the treatment we got: after being told to stop worrying so much, it was a whirlwind of specialists, scales that to my horror showed weight loss. That afternoon I came home with a hole in my chest and my life flooding out all around my feet. I called my family to give the news: we are going to the Children's Hospital in St. Louis tommorrow, they think Ezra has Cerbal Pasley".. my worst fear. A nightmare I could not wake from. Less than 24 hours later a cerbal Palsey diagnosis would seem like an escape, a breeze: "I take it BACK! Please let it be C.P!". Gauchers Type 2 is a rare metabolic disorder, it takes the child back, all the back to before autonomic nervous function...back into the abyss. We held tight to denial, and tight to his little body which was getting littler each day. But we were going to fight we were going to be so good and so pure and so hopeful that God would take this away and our child would live...He only lived to be 11 months old but I feel like we fought wars for decades during those months, driving to specialists, searching for hope. There was no sleep. He could not tolerate outside air (his mammilian diving relex would send him into apnea). He nursed 22 hours of everyday, nestled close in my sling, my body was his morphine drip. When he died in the hospital in our arms, we could still not believe he was even sick.
And how can I explain what follows? Left with one child now the question: do we have more? Do we test? With Gauchers it is probable that we both carry a recessive gene and so...25% chance for a repeat. It was my sister Maria who said "Yes, but that is 75% in your favor!"
Our third son was born 10 months after Ezras death. We had not done any testing. We lived in a cloud of unknowing. On edge. But even though we were on the edge, I was happier than I ever have been in my life before then. Azel showed me how Ezra made me a mother. There was nothing to "get back to" my life wasn't "on hold" while I nurtured this small baby. This IS my life. Now, always NOW. I was able to feel new heights of joy even as we continue to process the grief. A feeling that my heart has been broken open, that I can feel a broader spectrum than I once could.
With our family complete, we were talking about steralization and practiced safe sex. When Azel was two we were visiting my family in Phoenix, walking past the fish in the butchers section I got sick...I got....*sick*.... I knew the feeling well, but I could not believe it...So began 9 months of tears, fear, hope against hope, joy, and terror. The moment Eden was born with a swollen belly I knew, I knew he was not for this earth long. I knew my children would burry another brother, my husband would burry another son...our parents another grandchild, it was so starck. I wanted so badly to hold it forever, to protect my children, my husband, our brothers and sisters and parents. All I could see was rings of grief and our family at the center. I wanted protect everyone from the coming storm forever...but it wasn't long. When he was 3 weeks old we did our PKU test, and he about bled out through his pin prick. Gauchers kids do not produce platletts. We had a diagnosis about 3 weeks later.
Eden only lived for 4 months, and it was like a chance to be with Ezra again, as well as getting to know this new angel. He was the opposite side of Ezra's coin. So calm, so happy, he loved the wind in his face, the sun on his pink brown hair, he slept in a dream between worlds. He seemed to be spared all the pain and agitation Ezra had fought so hard with. We wept deeply, openly. There was nothing to fight, and there was no fight left in us. We just laid down in our bed together. We found a hospice nurse who would come, and she was exactly like our midwife: she came once a month and we talked about what to expect, what to get to be "ready". We put a welcome mat out for death to come and take our precious boy and prayed for grace.
It took almost two years but we did come to the place where we were at unity that another child was knocking on our family's door. We prayed and told each other, and the unborn child, and God that we would have to test. We would have to know. We agreed to one last pregancy. We submitted to a CVS and then an amnio (since our lab work was lost...why not?) finally at about 20 weeks into the pregnancy, we were told the miraculous news: we could expect a child without Gauchers. We could finally tell our families! I was so excited to tell our oldest son Elijah who was so deeply marked by lossing two brothers. He had been crying recently when we saw a baby at the grocery store, or wherever. He would get all teary and just shake his head "it isn't fair"...So when we finally could tell folks, he was the first one we told. He started jumping up and down and cheering. All the sudden he went totally quiet. "I hope this baby doesn't die". Oh sweet heart, we know this baby doesn't have Gauchers. We all just cried together and laughed too. And our hearts heal as Zen grows. I feel like he has been salve for us all.
So after 5 births our home is full, and our family is complete...Five sons, we are a interdimentional group. Three are here and two have gone on ahead of us. I feel like they have gone to college or something: I am glad they are well, but I wish they would call or write once in a while. I miss them.
I told Colleen, I feel like this is the first spring I have really experienced since Ezra was here, 8 years ago. I feel like colors are creeping back into my visual field, like life is real. And yet, I would not change a moment of anything we went through as a family. My soul, my core being has been marked, I have been changed. Our marriage, our parenting, our lives can never be as if we were not touched by Gauchers. I feel like I am on the other side of a Valley. "Do you always feel it?" Yes. You always feel it. But the feelings grow and spiral like a great tree in your heart.
When Colleen told me about Retts, I must admit it rolled off me like water...my waxy armor said "no, certainly not, she must not know what she is saying". It still hits me like cold water. Instantly I got a seat on the other side of the fence and now I am feeling all that they must have felt watching our family: helpless to do anything. The only rope we have is our love for Emmy, Ava, Collen, John and the new peanut! We have also the journey, and the knowledge that the Valley is not endless but only a piece of the journey. We are all along for the ride.
Soooo... I have a kid in a stroller and there is no elevator. She's fussy because she's hungry but I can't just hand her a bag of crackers and let her feed herself. I'm pregnant and can't carry the stroller with Emmy up the stairs so she needs to get out and walk up the stairs which is difficult for her to do. I didn't want to say anything to the lady about Emmy's limitations. I knew we'd have to go eat in another area where we weren't able to see the playplace and I couldn't keep an eye on Ava. Ok. We need to eat so up the stairs we go. I get Emmy out of the stroller and hold her under her arms and start trying to get her to lift her feet for each step. She's not happy and starts hitting herself, biting and screaming. Lovely. Now all of the families eating in the loft area have turned their attention to us. We make it to the top and I start feeding Emmy so she calms down. Ava and her pals rush through lunch and head back down to play while Emmy and I stay up in the loft for a while watching and eating. In my head I'm cursing the lady who made us come up here. I'm sure she had no idea what it's like to care for someone who can't do things for herself. The feelings were compounded by the fact that all the kids were having a blast and Emmy couldn't get in there to play. I sat up there stewing for a while. My friend was down by the playplace chatting with the lady who worked there. Later in the parking lot my friend told me the lady had been asking about Emmy. The lady had shared that she had taken custody of a friend's severly autistic adult daughter after her friend had passed away. She was talking about how challenging it can be and wondered about Emmy's situation. It then hit me. I was judging this lady...so certain she had no idea what it would be like to live with Rett Syndrome when in fact she was going home to a very similar situation everyday.
So often I found myself looking at others in the same light. I would see families with their three healthy children and wondered if they knew how lucky they were. They didn't have to watch their children suffer...what a gift. I was sharing my feelings with my mom one day and she said, "Well look at your brother's family. Seeing them now you would never know what they've lived through." This is so very true. They now have three, beautiful, healthy, hilarious sons but it wasn't an easy road.
See, unfortunatly our family has been touched by more than one rare disease. My brother and his wife lost two sons to a rare disease called "Gauchers". It is a genetic disease, like Rett, but it is hereditary. Each child they had, had a 25% chance of having this disease. Since February 29th was rare disease day I wanted to share their story. I have found that when others share their stories with me it gives me such a greater understanding of life and it's challenges. It makes me feel like I'm not alone living in this world of the unknown. And, it always reminds me that we are stronger than we'll ever really know.
Kyle and Bek's Story
When our second son was born, we thought our family was complete. It is hard to remember back to that, to before we were marked, changed. Colleen sometimes asks "Do you still feel it?"... I am never quite sure how to answer, yes, you always feel it...but it changes, spirals, you feel different parts and a distance grows...the feeling changes. It can still knock you down, but the quality is different, you rest in it, digest it again.
When our second child Ezra was 4 months old he started coughing. He was sitting up , and we even got to hear his laugh once but the cough never went away, I was so exhausted and so worried, I must have gone to our doctor 5 times in 5 weeks, they finally basically told me to stop calling. I also noticed a neck retraction which led me to bring him to a chiropracter who at least listened to me and seemed concerned about him. She could see what I was saying when I insisted "something was going on".
By the time he was 8 months old he could no longer sit, the cough and neck retraction where worse...and then suddenly, he stopped baring weight. He just lost his connection to his feet. It was about this time that I saw a picture of him at 6 months...He was clearly bigger than the child I now held in my arms.
We went back to the doctors and I was stunned at the treatment we got: after being told to stop worrying so much, it was a whirlwind of specialists, scales that to my horror showed weight loss. That afternoon I came home with a hole in my chest and my life flooding out all around my feet. I called my family to give the news: we are going to the Children's Hospital in St. Louis tommorrow, they think Ezra has Cerbal Pasley".. my worst fear. A nightmare I could not wake from. Less than 24 hours later a cerbal Palsey diagnosis would seem like an escape, a breeze: "I take it BACK! Please let it be C.P!". Gauchers Type 2 is a rare metabolic disorder, it takes the child back, all the back to before autonomic nervous function...back into the abyss. We held tight to denial, and tight to his little body which was getting littler each day. But we were going to fight we were going to be so good and so pure and so hopeful that God would take this away and our child would live...He only lived to be 11 months old but I feel like we fought wars for decades during those months, driving to specialists, searching for hope. There was no sleep. He could not tolerate outside air (his mammilian diving relex would send him into apnea). He nursed 22 hours of everyday, nestled close in my sling, my body was his morphine drip. When he died in the hospital in our arms, we could still not believe he was even sick.
And how can I explain what follows? Left with one child now the question: do we have more? Do we test? With Gauchers it is probable that we both carry a recessive gene and so...25% chance for a repeat. It was my sister Maria who said "Yes, but that is 75% in your favor!"
Our third son was born 10 months after Ezras death. We had not done any testing. We lived in a cloud of unknowing. On edge. But even though we were on the edge, I was happier than I ever have been in my life before then. Azel showed me how Ezra made me a mother. There was nothing to "get back to" my life wasn't "on hold" while I nurtured this small baby. This IS my life. Now, always NOW. I was able to feel new heights of joy even as we continue to process the grief. A feeling that my heart has been broken open, that I can feel a broader spectrum than I once could.
With our family complete, we were talking about steralization and practiced safe sex. When Azel was two we were visiting my family in Phoenix, walking past the fish in the butchers section I got sick...I got....*sick*.... I knew the feeling well, but I could not believe it...So began 9 months of tears, fear, hope against hope, joy, and terror. The moment Eden was born with a swollen belly I knew, I knew he was not for this earth long. I knew my children would burry another brother, my husband would burry another son...our parents another grandchild, it was so starck. I wanted so badly to hold it forever, to protect my children, my husband, our brothers and sisters and parents. All I could see was rings of grief and our family at the center. I wanted protect everyone from the coming storm forever...but it wasn't long. When he was 3 weeks old we did our PKU test, and he about bled out through his pin prick. Gauchers kids do not produce platletts. We had a diagnosis about 3 weeks later.
Eden only lived for 4 months, and it was like a chance to be with Ezra again, as well as getting to know this new angel. He was the opposite side of Ezra's coin. So calm, so happy, he loved the wind in his face, the sun on his pink brown hair, he slept in a dream between worlds. He seemed to be spared all the pain and agitation Ezra had fought so hard with. We wept deeply, openly. There was nothing to fight, and there was no fight left in us. We just laid down in our bed together. We found a hospice nurse who would come, and she was exactly like our midwife: she came once a month and we talked about what to expect, what to get to be "ready". We put a welcome mat out for death to come and take our precious boy and prayed for grace.
It took almost two years but we did come to the place where we were at unity that another child was knocking on our family's door. We prayed and told each other, and the unborn child, and God that we would have to test. We would have to know. We agreed to one last pregancy. We submitted to a CVS and then an amnio (since our lab work was lost...why not?) finally at about 20 weeks into the pregnancy, we were told the miraculous news: we could expect a child without Gauchers. We could finally tell our families! I was so excited to tell our oldest son Elijah who was so deeply marked by lossing two brothers. He had been crying recently when we saw a baby at the grocery store, or wherever. He would get all teary and just shake his head "it isn't fair"...So when we finally could tell folks, he was the first one we told. He started jumping up and down and cheering. All the sudden he went totally quiet. "I hope this baby doesn't die". Oh sweet heart, we know this baby doesn't have Gauchers. We all just cried together and laughed too. And our hearts heal as Zen grows. I feel like he has been salve for us all.
So after 5 births our home is full, and our family is complete...Five sons, we are a interdimentional group. Three are here and two have gone on ahead of us. I feel like they have gone to college or something: I am glad they are well, but I wish they would call or write once in a while. I miss them.
I told Colleen, I feel like this is the first spring I have really experienced since Ezra was here, 8 years ago. I feel like colors are creeping back into my visual field, like life is real. And yet, I would not change a moment of anything we went through as a family. My soul, my core being has been marked, I have been changed. Our marriage, our parenting, our lives can never be as if we were not touched by Gauchers. I feel like I am on the other side of a Valley. "Do you always feel it?" Yes. You always feel it. But the feelings grow and spiral like a great tree in your heart.
When Colleen told me about Retts, I must admit it rolled off me like water...my waxy armor said "no, certainly not, she must not know what she is saying". It still hits me like cold water. Instantly I got a seat on the other side of the fence and now I am feeling all that they must have felt watching our family: helpless to do anything. The only rope we have is our love for Emmy, Ava, Collen, John and the new peanut! We have also the journey, and the knowledge that the Valley is not endless but only a piece of the journey. We are all along for the ride.
Monday, February 27, 2012
Discipline
How do you discipline a kid who, up until this regression, has never done something she's not supposed to? I honestly don't know if she knows there are rules in this world. Up until the regression she smiled, flipped through her books, sat and played with toys, worked hard at therapy and achieved so many of our goals. We encouraged her to get into stuff! I remember one day before John left for work he opened one of our drawers in the kitchen and showed her how fun it would be to pull stuff out and make a mess. A couple of times I put her in a time out for some small offense. I came back to check on her and she had gotten out of the chair...all by herself. Instead of telling her she needs to wait until I come and get her out of time out, I cheered for her. Yea Emmy, you got out of that chair all by yourself...what a big girl! The girl has never complained about not having a turn or been possesive over any toys. She simply does not care about material things, other than her books. As long as she's engaged with people, she's happy. But this leads me to our current problem. Since she's now unable to do things on her own, she wants somebody to engage her most of the time. The only thing she can do independently is listen to music which she does A LOT when we're home and cooking, cleaning, living life. So, I think she gets bored, restless, frustrated she can't just go over, sit down and look at her books. It was not so long ago that she could. Now, I need to help her get to the floor and hold the book. I need to take both hands and help them flip. Since I'm not available to assist her 24/7 AND she can't communicate with me she pretty much freaks out. Since she's started regressing there has been a ton of head hitting, biting, flailing, screaming and otherwise uncontrollable fits. Now, I'm used to a fit. Ava was an expert fit thrower but Ava never hurt herself. That's the part I have to watch carefully with Emmy. And I'm in the dark about what the fit is about. I would say maybe 10% of the time I know why she's upset. The other 90 I'm guessing. Does something hurt? Is she feeling sick? Did she bite her hand too hard or hit her head on something? Or does she simply want me to change the song? Maybe she's upset because she wants to sit on the potty...the list goes on. I threw any and all discipline (like what I would have done with Ava) out the window. I just wanted to make her happy. And truthfully, when we found out she had Rett Syndrome and began to understand what she was going through my heart was breaking. I started having a hard time just engaging her in simple floor play. I was watching the skills disappear and it was just too hard to watch. The situation just seemed (and still does) so cruel. So I found myself, during these fits, crying right along with her. I tried everything possible to sooth her. I didn't tell her to stop biting or hitting. If my body was failing me I'd probably bite and hit too. But now we're all starting to get comfortable with her new limitations. I'm so unbelievably thankful to have reached this point. Losing the skills was the absolute worst for her and for us. I am bracing myself for what may lie ahead but really the hard part (so far) was going from her having some independence to basically having none at all. Even though she's more comfortable with what her body allows her to do she still has the uncontrollable fits. I think improving communication is going to help A LOT and we're taking steps to help us be able to communicate with her better. But that will take time. We looked into helping with anxiety but the doctor didn't recommend medication. He suggested behavioral therapy. I know nothing about behavioral therapy and at the moment I'm too tired to start researching. Any other Rett parents out there have suggestions? Are there different types of behavioral therapy or is ABA the most commonly used with our girls? And what the heck is ABA? I've heard it described in broad terms but want to know what it would look like when you're trying to break self injuring behaviors. I don't mind adding another therapy to the mix if it will calm my girly down. So for now I just try and read her before the fit comes. I try to communicate with her before she's too upset. And if I'm not succesful and the fit is out of control I put the braces on her, surround her with pillows and let her flail. I guess if she can't express herself with words then she needs to express herself through movement. She needs to get out that frustration, anger and saddness. We're just all thankful when it's over and we can move on with our day...until another one strikes!
Friday, January 27, 2012
Dress Up Time
Around 4 pm or so these two start getting a little restless. The hats, scarves, dish towels, safety pins, yarn, crayons, tape and other random household items come out and it's dress up time. Emmy is such a trooper. She pretty much goes along with whatever story line Ava has created...
 |
| Emmy mid-flick |
 |
| For some reason dress up time with Ava always involves tape. |
 |
| The flying fairy... |
 |
| ...and some kind of chinese princess |
 |
| This is Rapunzel...with homemade hair. |
 |
| And here's the prince...also with homemade hair! |
Tuesday, January 24, 2012
My Therapists
There are so many therapists in my life...that work unpaid. Mainly, my parents, sister and brother. These four have listened patiently and loved unconditionally. They've helped me wade through the deepest, scariest waters. They've reassured me, telling me I can do this even when I think I can't. And I am just beyond grateful. I've realized that I'm not the, "pull up your big girl undies and move on" kind of person. When the shock and saddness hit, I had to take the time to feel it. I had to let myself get all the way to the bottom of it and rest there for a while. And had I not taken that rest, I think I may have exploded. I needed to call my family and repeat myself a million times and have them tell me it was going to be ok. And now, after many months of digesting our new reality, the saddness has subsided a bit. It still washes over me, knocks me down, but it takes less time for me to get back on my feet.
I feel like I've found a way to grieve but still live life. Be sad about Emmy's struggles but still find joy. There was a time when I wondered if I would ever feel joy again. It felt like no matter what I was doing a piece of my heart was dark. Nothing felt complete. But over time I am getting better at pushing the Rett monster aside and trying to focus on whatever small joy may be presenting itself at the moment. Rett Syndrome will be there, it doesn't need my immediate attention all the time.
Never have I had to deal with a difficult situation that I wasn't able to push out of my mind, if even for a brief couple of minutes. There has always been some distance. But Rett Syndrome is an every day, in your face, kind of struggle. And to top it off the person who is struggling is someone who owns a piece of your soul. It has just taken me a while to figure out how to live with this battle and still find joy. During one of the MANY converstations I've had with my dad throughout this time he told me that living with joy is a choice you make. Ok, easy to say, harder to do when you're watching your daughter regress. Then he shared a story with me...a piece of his childhood that I never fully understood. Throughout his childhood his father had heart attacks year after year after year. He had a host of medical problems that left him unable to work and in pain. My grandma worked long, hard hours and my dad went off to school each day. He said when they returned home they were never quite sure what they'd find. This went on for years. As a young boy he had to figure out a way to live life, enjoy life and focus on all the goodness that surrounded him. This story not only gave me a little insight into what has made my dad, my dad...it gave me strength.
My therapists, whether it's my family, other rett moms, neighbors or friends have sat with me and listened. It's really remarkable. They haven't tried to 'fix' things... they haven't offered up one liners like "It's God's plan" and walked away. They've sat by my side and let me grieve, letting me know it's ok to feel. Really, what would I do without these people? I just hope I can be that person for somebody else. That I can be a good enough friend to just sit by their side and listen.
I feel like I've found a way to grieve but still live life. Be sad about Emmy's struggles but still find joy. There was a time when I wondered if I would ever feel joy again. It felt like no matter what I was doing a piece of my heart was dark. Nothing felt complete. But over time I am getting better at pushing the Rett monster aside and trying to focus on whatever small joy may be presenting itself at the moment. Rett Syndrome will be there, it doesn't need my immediate attention all the time.
Never have I had to deal with a difficult situation that I wasn't able to push out of my mind, if even for a brief couple of minutes. There has always been some distance. But Rett Syndrome is an every day, in your face, kind of struggle. And to top it off the person who is struggling is someone who owns a piece of your soul. It has just taken me a while to figure out how to live with this battle and still find joy. During one of the MANY converstations I've had with my dad throughout this time he told me that living with joy is a choice you make. Ok, easy to say, harder to do when you're watching your daughter regress. Then he shared a story with me...a piece of his childhood that I never fully understood. Throughout his childhood his father had heart attacks year after year after year. He had a host of medical problems that left him unable to work and in pain. My grandma worked long, hard hours and my dad went off to school each day. He said when they returned home they were never quite sure what they'd find. This went on for years. As a young boy he had to figure out a way to live life, enjoy life and focus on all the goodness that surrounded him. This story not only gave me a little insight into what has made my dad, my dad...it gave me strength.
My therapists, whether it's my family, other rett moms, neighbors or friends have sat with me and listened. It's really remarkable. They haven't tried to 'fix' things... they haven't offered up one liners like "It's God's plan" and walked away. They've sat by my side and let me grieve, letting me know it's ok to feel. Really, what would I do without these people? I just hope I can be that person for somebody else. That I can be a good enough friend to just sit by their side and listen.
Thursday, January 12, 2012
Winter Walk
Ava has been asking if it's really winter. There has been pretty much NO SNOW in Chicago until today.
They all came in with smiley, red faces. John said at one point the sled flipped over and they both went face first into the snow. He thought Emmy would start screaming. Nope. She was just happy to eat snow without having to make her hands cooperate!
They all came in with smiley, red faces. John said at one point the sled flipped over and they both went face first into the snow. He thought Emmy would start screaming. Nope. She was just happy to eat snow without having to make her hands cooperate!
Friday, January 6, 2012
Holidays
Christmas, New Years and all the days in between had a different feel this year. There were some emotional ups and downs but overall not as hard as I thought it would be. Surprising, I know! When we celebrated Emmy's 3rd birthday in August I had talked myself into being excited about her little family party and I thought it would be great. Well, when the day came it was HARD. Much harder than I thought it would be. I've come to understand that the saddness hits at very unexpected times. I never know what will trigger it (might have something to do with pregnancy hormones too). But thankfully we were surrounded by our families throughout the holidays and just being with people who love and care about our little foursome seemed to make everything better.
We spent Christmas at John's parent's house...wish I had a bunch of pictures to share but just didn't get around to finding the camera. Pure laziness! I spent my time there sleeping in, enjoying A LOT of wonderful food and just hanging out with his family. We went to Christmas Eve mass with the kids and both girls did amazing. Emmy usually has a hard time at church but she just snuggled with John and was all smiles! The message given at the service was one of hope...it was just what I needed to hear.
Ava and Emmy love their Mimi and Grandpa's cat, Jack. This cat is the most even tempered animal I've met. He sits on his little perch while Emmy attempts to pet him. Her attempts usually resemble hitting or flicking and he just stays put and takes it! The look on his face says it all.
The following Friday John got home from work and we made a last minute decision to drive down to my parent's house (near St. Louis) for New Years. It's about five hours in the car so I brought along my huge body pillow and tried to stretch out the best I could. I'm so tired by Friday that I passed out with the girls early in the trip and John chugged his coffee to stay awake.
Again, I took no pictures...boo. But we did have a wonderful time! New Year's Eve night my mom made a huge Mexican feast, we played dominos (although my dad secretly wanted to be playing bridge : ) and I actually made it until midnight. My brother, his wife and three boys came over and the cousins ran wild together. Uncle Kyle is always the entertainment...playing all sorts of chasing games the kids love. One day I'll get a video of the action, it's pretty hysterical!
I did manage to get my act together and get out a Christmas card AND it's a picture of our whole family. Getting a picture of the four of us is a daunting task so I usually just send out a picture of the girls. So I'll leave you with the Foster Four, soon to be FIVE...I'm starting to get a little nervous about that!
We spent Christmas at John's parent's house...wish I had a bunch of pictures to share but just didn't get around to finding the camera. Pure laziness! I spent my time there sleeping in, enjoying A LOT of wonderful food and just hanging out with his family. We went to Christmas Eve mass with the kids and both girls did amazing. Emmy usually has a hard time at church but she just snuggled with John and was all smiles! The message given at the service was one of hope...it was just what I needed to hear.
Ava and Emmy love their Mimi and Grandpa's cat, Jack. This cat is the most even tempered animal I've met. He sits on his little perch while Emmy attempts to pet him. Her attempts usually resemble hitting or flicking and he just stays put and takes it! The look on his face says it all.
The following Friday John got home from work and we made a last minute decision to drive down to my parent's house (near St. Louis) for New Years. It's about five hours in the car so I brought along my huge body pillow and tried to stretch out the best I could. I'm so tired by Friday that I passed out with the girls early in the trip and John chugged his coffee to stay awake.
Again, I took no pictures...boo. But we did have a wonderful time! New Year's Eve night my mom made a huge Mexican feast, we played dominos (although my dad secretly wanted to be playing bridge : ) and I actually made it until midnight. My brother, his wife and three boys came over and the cousins ran wild together. Uncle Kyle is always the entertainment...playing all sorts of chasing games the kids love. One day I'll get a video of the action, it's pretty hysterical!
I did manage to get my act together and get out a Christmas card AND it's a picture of our whole family. Getting a picture of the four of us is a daunting task so I usually just send out a picture of the girls. So I'll leave you with the Foster Four, soon to be FIVE...I'm starting to get a little nervous about that!
Subscribe to:
Posts (Atom)