Jinxed: The Worst Thing Ever

On February 6th I was in my office, a bedroom on the lower level of our duplex down in Lincoln Square, working on projects and scheduling upcoming conference calls when I heard Craig’s footsteps coming down the stairs.  As he marched into my doorway he announced, “the worst thing ever just happened.”  At that moment I felt like Fred Sanford, clutching my chest and waiting for the big one.  “They rescinded the offer, I don’t have the job.” At that moment I knew we had been jinxed.  After 3.5 years of job hunting to finally snag a position that he was qualified for and excited about and then have it all plucked away in an instant is devastating.  I felt like I got kicked in the gut, the wind knocked out of me even though I hadn’t moved a muscle.  He read me the email from the partner, a glowing review of Craig and his character along with an offer to connect him to other firms, but no explanation.  Since a colleague of his from Keno Kozie was the one who made the initial introduction, Craig began picking his brain for information and sending out an email to the woman who he would have been working under, thanking them for the opportunity and looking for explanations.  The best we could gather is that it became an issue of money, almost $20K over what their ceiling was for this position that Craig had skillfully negotiated them up to might have been the main reason for it all to come crashing down, but truly we didn’t have a concrete answer.

On February 12th we got a call from Craig’s brother that Craig’s mom was in bad shape and he needed to go see her right away.  Sherri had been struggling with her pulmonary fibrosis but it was truly a series of falls that were the beginning of the end, first a broken arm, then a shattered shoulder.  The team was gearing up to ween Sherri off her pain meds so she could make the decision regarding surgery since her condition didn’t make her an ideal candidate.  Clearly, Sherri didn’t want the painful surgery and the arduous recovery that would have followed and chose to leave us all on February 16th.  When we lit the memorial candle the night of her funeral it all became very real.  Even Aleck, who either didn’t quite understand what was going on or simply had trouble processing it, was struck by the candle.  It prompted him to ask if we’d ever see Bubbie again.  I told him we wouldn’t.  “But what if we see someone who looks like Bubbie and sounds like Bubbie…” and I explained how she wouldn’t be Bubbie because she wouldn’t have been Aleck’s grandmother and she wouldn’t have been Craig’s mom.  On the way to school, he wanted to keep the conversation going.  He asked why people die and I said, “People die for three different reasons; they lose too much blood, they can’t get enough oxygen, or their organs fail.”  “Or people kill them,” he responded, after all, it wasn’t even a week after the Parkland shootings.  I told him how some people believe that when we die our bodies die but our souls leave us and go someplace else.  “Our souls go with God,” he responded and I praised him for his answer as I wiped away my tears.

On February 28th we had our meeting with our surgeon about the results of Aleck’s gait study (see last blog post for details) and what she and her partner’s recommendations are going forward for Aleck and surgery.  His right leg is way turned out, his right hip is not in proper alignment, and if we want to add stability to his walk and prevent him from painful arthritis in his 30’s they recommend two surgeries for over this summer.  One to cut his fibula and tibia, turn them in a proper direction, then re-attach them with a metal plate and screw to get that right leg in proper alignment, this is called the “Deroatation Osteotomy of the Tibia”.  The second surgery would only be on his right hip, cutting out a wedge from his femur and inserting it around the pelvic bone to force that hip into proper alignment, called “Varus Derotation Osteotomy of Femur & Pelvic Osteotomy”.  At this point, we will be in the hospital for a few days, and it’s scheduled at Lurie just a few days after the end of the school year.  Then he’ll have to wear a total body splint for six weeks, three of them only lying down, and then three of them with minimal sitting up, no standing or walking.  Craig’s temp position ends in May and he will be the primary caregiver during this time, though I will jump in when I can to provide relief and all three of us will be at the hospital together.  The summer is not going to be a pretty one and we will be reaching out to all of you to come and visit us and help make the time go by.  There’s only so many hours he can spend on the IPad and so many movies and television he can watch.  I’m sure we will all be craving social interaction.  After the six weeks of recovery Aleck and Craig will check into Shirley Ryan Ability Lab for up to six weeks of intensive inpatient rehabilitation to get our Iron Aleck back on his feet as soon as possible.  He might miss the start of school, we’ve already started a conversation with the counselor about this and there are plenty of ways to keep him up to speed.

On March 1st I called my mom.  I told her all about the official findings of the gait study, the recommended operations, and the recovery time.  I assured her we were going to seek a second opinion, we aren’t entering into any of this lightly, and we’ve learned that there is more than one answer to any problem.  The surgery is scheduled but none of this is set in stone.  She started to cry, thinking about our sweet little man in so much pain, stuck in such an uncomfortable contraption for the entire summer.  I said to her, “Hey look, we’ve got this lovely apartment, this beautiful living room with fabulous windows looking onto a super cute neighborhood,  this comfortable couch with plenty of room to lie down, and a great view of the television.  We are prepared for this.”

On March 2nd we got an email from our landlord.  After spending four months fighting with them to fix our radiator problems, still unresolved at that point, they informed us that they were raising our rent by $250 a month. The other tenants in the building saw a $25-$50 increase, ours is $250 making our apartment now completely unaffordable as I’m going to be the only one able to make an income for at least three months if not longer.  And as much success as I’ve been having with my freelance career it could slow down at any moment, it’s month to month, nothing is steady and it sometimes takes me months to chase down payments, and sometimes I run into people who take advantage of me and don’t pay me at all. My first instinct was to somehow force our landlords to let us out of the lease early since it’s up June 30th which would only be days after we get home from the hospital.  Therefore we’d have to move May 1st so we have some time to get settled before Aleck’s major surgery.  But Craig looked at me with his huge almond shaped brown eyes, so wide I could see straight through to his soul and said, “Honey, I can’t take one more thing.  If we have to move this might just be the move that will break me.”

Right now we are trying to put a plan together.  We are trying to figure out how to stay here for another year and hold off this outrageous rent increase.  They are trying to squeeze us, they know we can’t leave right now, and they are trying to take advantage of our situation.  It’s a horrible feeling.  This apartment which I once loved now disgusts me, the energy in here has shifted dramatically and Craig and I are trying desperately not to take it out on each other.  We are trying to rally our troops, work with friends, and put a plan together so we don’t lose what little bit of sanity and patience we may have left.

On March 9th we went to the big fundraiser for Aleck’s school.  We put on our game faces and tried as hard as we could to steer conversations away from ourselves.  It’s not fun wiping smiles off people’s faces while they are enjoying their wine and apps.  Thankfully we were pretty successful,  everyone wanted to talk about Aleck.  We got huge hugs from his principal, guidance counselor, and attacked his one on one aide with expressions of gratitude and appreciation, Aleck is having a phenomenal year at school and it’s taken a village.  Other parents wanted to tell us anecdotes about Aleck and his classmates, about how their children think about Aleck’s needs and complain when he’s not around. His Kindergarten teacher couldn’t say enough positive things about him, embraced us in the most wonderful hug and whispered in our ears, “you are home.” Her choice of words the perfect sentiment to assuage our broken spirits as we prepare for battle on many different fronts.