So How Are You Doing?
Over the years, especially the since January 6, 2013 many people have asked how we are doing...lately my standard answer is "I know where my head, my feet, my son, my daughter and my husband are. If you ask me about anything else, I most likely don't know."
The past few weeks have been especially difficult for me...I am watching my son go thru things I never imagined. He has more strength and courage then I could imagine. Seeing the fear in his eyes, has been heartbreaking. There is no way for me to make it go away, in some ways no way to comfort him. I have watched some of the sadness and fear turn back into joy and spunk.
I am watching my daughter, from a far, continuing to take each day as it comes. Tangoing with her just so I can find out what she did in school that day. Knowing she is so exhausted that anything can send her over the edge; most of those things are typical things any almost 10 year old goes thru, while others are not. In many ways, she is very well adjusted, however, in many ways she is struggling with things many will never experience in their lives, let alone a girl should not have to experience with her twin brother. Those are things I can not make better for her.
I am watching my husband...well watching....we are two ships passing. On a good day we may spend an hour in the same room. On other days we see each other in the hospital parking lot switching places, one of us at the hospital the other going to work and taking care of Becca. Talking on the phone at night...maybe happens a couple times a week otherwise its texting for us. Then there are the nights when one of us is to tired to do either and have fallen asleep before we talk or text. Brian and I have had some very difficult conversations over the last few weeks...some of them with each other, some with family, some with doctors, some with friends, some with the kids. I know there are more difficult conversations to have. We have many things to figure out before Ian can come home, many of those things are out of our hands, while others are things we need to do around the house. For those of you who know us well...this is hard for us, we are planners ....both of us in different ways so having to wait on others to make decisions before we can move forward...not so easy.
As for me, my emotions have been up and down to anywhere in between, depending on where we are in our journey towards our ever changing normal. Some days I am drained; emotionally, mentally and physically. So how do I do it....I just keep moving forward with the same strength and courage Ian, Becca and Brian have. I think none of us realize it but we are thriving off of each others strength and courage and for that the four of us are blessed. As well as thriving off of all the love and support we have gotten over the years, especially the past weeks.
Thank you all for being a part of our village and our ever changing normal.
The past few weeks have been especially difficult for me...I am watching my son go thru things I never imagined. He has more strength and courage then I could imagine. Seeing the fear in his eyes, has been heartbreaking. There is no way for me to make it go away, in some ways no way to comfort him. I have watched some of the sadness and fear turn back into joy and spunk.
I am watching my daughter, from a far, continuing to take each day as it comes. Tangoing with her just so I can find out what she did in school that day. Knowing she is so exhausted that anything can send her over the edge; most of those things are typical things any almost 10 year old goes thru, while others are not. In many ways, she is very well adjusted, however, in many ways she is struggling with things many will never experience in their lives, let alone a girl should not have to experience with her twin brother. Those are things I can not make better for her.
I am watching my husband...well watching....we are two ships passing. On a good day we may spend an hour in the same room. On other days we see each other in the hospital parking lot switching places, one of us at the hospital the other going to work and taking care of Becca. Talking on the phone at night...maybe happens a couple times a week otherwise its texting for us. Then there are the nights when one of us is to tired to do either and have fallen asleep before we talk or text. Brian and I have had some very difficult conversations over the last few weeks...some of them with each other, some with family, some with doctors, some with friends, some with the kids. I know there are more difficult conversations to have. We have many things to figure out before Ian can come home, many of those things are out of our hands, while others are things we need to do around the house. For those of you who know us well...this is hard for us, we are planners ....both of us in different ways so having to wait on others to make decisions before we can move forward...not so easy.
As for me, my emotions have been up and down to anywhere in between, depending on where we are in our journey towards our ever changing normal. Some days I am drained; emotionally, mentally and physically. So how do I do it....I just keep moving forward with the same strength and courage Ian, Becca and Brian have. I think none of us realize it but we are thriving off of each others strength and courage and for that the four of us are blessed. As well as thriving off of all the love and support we have gotten over the years, especially the past weeks.
Thank you all for being a part of our village and our ever changing normal.
Stacy Berman Lunenfeld I love the picture of Becca and Ian. Such love!
ReplyDeleteDebi Gersh Van Camp Xo
Rachel Heath Wallace Prayers continue for all of you. Xo
Lauren Kemp You all are truly amazing :-) thank u for all of ur updates ! My thoughts and prayers are with u all every day!
Lynette Fitzpatrick Read your post, prayers for all of you. One can only imagine, but I am thinking of you. <3
Anne Polakoff King Marci, your writing is not only very therapeutic for you, it is a gift you have continued to give to those who love you. I know the emotional ups and downs and know how much it helps. You are truly amazing. And that's where Ian gets his strength.
Kristin Howlett Mazzarese I am amazed by your whole family. Thank you for continuing to update us all about your journey. You are an inspiration.
Brenda Bforsma Hanson We are Hereford you. If you have any questions we are here. Don't be afraid to reach out to us or to anyone, we are all here for you and for Ian (and your whole family). We, in the SMA community know what you are going through and hate what you are feeling. You are doing a great job and keep on learning and taking those baby steps forward and Ian will be home soon. Good luck!
Harry Blacker Stay strong Marci & Brian. May God be watching over and bless you all. Our love and prayers continue to go out to all the family!!