It’s been a while.<\/p>\n
Life has been a whirlwind and I haven’t really had a moment to take it all in. I am grateful for the chaos though, as it keeps me too busy to get stuck inside my head for too long…\u00a0
\nToday marks the beginning of an exciting new chapter in my life. After eight years of marriage and with our two beautiful healthy boys, my husband and I moved into our very first home. And in so many ways, it is all just so perfect- sunny and bright little Spanish-style, a nice quiet street, shops and restaurants near by and friendly neighbors with young kids all around us.<\/p>\n
But as hard as I’ve tried to just stay with the joy, this stubborn, scary, nagging little voice has been haunting me. And it’s been getting louder. I’ve done my best to ignore it until now, but I’m afraid that what it’s been saying all along may be true.<\/p>\n
You see, we spent many months looking for a house. There were some basic requirements, such as it having to be a one-story and on the smaller side, for obvious reasons. But in the neighborhood where we were looking, it seemed that we couldn’t avoid a house with just a few steps to the front door and a few steps to the backyard. And all of them had layouts that included a hallway of sorts. At a certain point I realized that I had to accept that I wasn’t going to find everything I wanted in one house.<\/p>\n
Since I wear leg braces every day now, I had only ever gone to open houses with them on, partially because I didn’t want to accept\/believe that something as silly and minor as a couple of steps could come between me and my dream or worse, my husband’s dream. So, we found this lovely little house. Just what we were looking for. And I convinced myself that the steps in the front and the back would be manageable. I decided that if I ever got to the wheelchair phase, then I could easily put ramps in. And if not, then I would just get railings installed on the sides of the stairs. And because of the long hallway, I would just keep my leg braces on all day and night, despite the callouses and the sore spots. That was my logical, rational mind talking.<\/p>\n
And here I am. Our first night. I have been on my feet all day, moving since early this morning. It’s 9:30pm and I have yet to take off my sneakers and leg braces. I am too afraid. Too afraid of how my body may (poorly) navigate through this beautiful new house and too afraid of how I will then handle it emotionally. Though I have tried to prepare myself for this moment for months- talking myself through the possible problems and potential solutions- for now I want to just live in the fantasy\/ denial just a little bit longer: what if it’s not as big of a deal as I thought? What if I won’t trip on the slight elevation in the floor between the tile and our new hardwood floors? What if I actually will be able to carry a bag of groceries through the front door by myself without losing my balance?<\/p>\n
Eventually, I will have to stop stalling, get off the computer and enter into my new life, but not because I want to. Mostly because I have no other choice. As anyone with HIBM can tell you, it’s the initial feelings of loss and shock that come with navigating new territory that are the hardest, but eventually we find a way to adjust.<\/p>\n
I am still amazed by how I can feel so extremely happy and grateful and blessed while simultaneously feeling so angry and sad and scared. How could I have looked forward to this day with as much passion as dread? How can I be so lucky to get to own a new home, be in love with my husband, have these two smiling little faces to wake up to and be surrounded by such wonderful family and friends AND have this nasty disease that continues to rear its ugly head in my most joyous moments?<\/p>\n
I try not to question it.
\nI try to hold onto both extremes in one hand and try not to interfere with process that takes over in my mind and heart.
\nAnd most of all, I try to be in touch with the truth that some things are beyond the physical…<\/p>\n","protected":false},"excerpt":{"rendered":"
It’s been a while. Life has been a whirlwind and I haven’t really had a moment to take it all in. I am grateful for the chaos though, as it keeps me too busy to get stuck inside my head for too long…\u00a0<\/p>\n","protected":false},"author":1,"featured_media":488,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-34","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"aioseo_notices":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5aYbC-y","jetpack_likes_enabled":true,"jetpack-related-posts":[{"id":16,"url":"https:\/\/livingwithhibm.com\/?p=16","url_meta":{"origin":34,"position":0},"title":"Tired","author":"admin","date":"August 27, 2013","format":false,"excerpt":"I'm tired. I'm over it. I feel like it's enough already. I've risen to the challenge, I've tapped into my inner emotional resilience, I've gained invaluable coping tools and I've been given the gift of learning to truly appreciate what I have. But now I'm \u00a0ready to be done. Ready\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2013\/08\/rain2.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":739,"url":"https:\/\/livingwithhibm.com\/?p=739","url_meta":{"origin":34,"position":1},"title":"Emergency Brake","author":"admin","date":"May 10, 2019","format":false,"excerpt":"The other night I dreamt that my car was speeding out of control. \u00a0I was sitting in the passenger seat. There was no one driving. I started panicking when I realized I didn\u2019t have the physical strength to get over to the driver\u2019s side. As I screamed, all I could\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2016\/04\/nausea.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":66,"url":"https:\/\/livingwithhibm.com\/?p=66","url_meta":{"origin":34,"position":2},"title":"Preparing for Landing","author":"admin","date":"September 16, 2014","format":false,"excerpt":"The other day, I \u00a0picked up my older son from school and tripped and fell on the way back to the parked car. It happens sometimes.\u00a0 As we waited at a stop sign \u00a0on our way home, I saw\u00a0one of the dad's from his\u00a0kindergarten class 3 \u00a0years ago walking in\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/09\/parking.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":644,"url":"https:\/\/livingwithhibm.com\/?p=644","url_meta":{"origin":34,"position":3},"title":"Resolve to Get Naked in 2018","author":"admin","date":"January 3, 2018","format":false,"excerpt":"Eat healthier. Exercise more. Get more sleep. Meditate. Read more books. It\u2019s been years since I\u2019ve made New Year's resolutions. I used to relish the opportunity to set intentions from a clean slate. It was fun to challenge myself. But after my diagnosis, when my scale of what mattered in\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/01\/IMG_9507.png?fit=1200%2C675&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/01\/IMG_9507.png?fit=1200%2C675&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/01\/IMG_9507.png?fit=1200%2C675&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/01\/IMG_9507.png?fit=1200%2C675&ssl=1&resize=700%2C400 2x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2018\/01\/IMG_9507.png?fit=1200%2C675&ssl=1&resize=1050%2C600 3x"},"classes":[]},{"id":98,"url":"https:\/\/livingwithhibm.com\/?p=98","url_meta":{"origin":34,"position":4},"title":"Reflections from an airport. (Be forewarned, there are a lot of them)","author":"admin","date":"October 13, 2014","format":false,"excerpt":"Sometimes I like to wait until I've more fully processed my thoughts and feelings about something before writing a blog post. And other times, I blog about something to more fully understand how I feel and where I stand on something. This is one of those times. Yesterday I spent\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2014\/10\/clouds.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]},{"id":370,"url":"https:\/\/livingwithhibm.com\/?p=370","url_meta":{"origin":34,"position":5},"title":"The In-Between","author":"admin","date":"October 4, 2017","format":false,"excerpt":"Let everything happen to you Beauty and terror Just keep going No feeling is final \u2013Rainer Maria Rilke I've had some hard moments in these last few weeks.\u00a0I've had to navigate some unexpectedly tricky terrain on middle school tours while trying to keep up with the rest of the pack.\u2026","rel":"","context":"Similar post","block_context":{"text":"Similar post","link":""},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=350%2C200 1x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=525%2C300 1.5x, https:\/\/i0.wp.com\/livingwithhibm.com\/wp-content\/uploads\/2017\/10\/stairs.jpg?fit=730%2C350&ssl=1&resize=700%2C400 2x"},"classes":[]}],"_links":{"self":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/34","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=34"}],"version-history":[{"count":1,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/34\/revisions"}],"predecessor-version":[{"id":574,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/posts\/34\/revisions\/574"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=\/wp\/v2\/media\/488"}],"wp:attachment":[{"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=34"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=34"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/livingwithhibm.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=34"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}