The Question

It happened, and I know it will only be the first of countless times.

Yesterday Harper's school had their annual 1st Grade Patriotic Program. It was so sweet. They sung songs and saluted the veteran relatives and friends of the families in attendance. Norah and I were especially excited to see that their Pledge of Allegiance song was accompanied by signs. (Not true ASL of course, but they were fairly accurate ASL signs using the frozen text of the pledge). I was such a proud mom to see my sweet boy on stage, knowing every word and giving me the occasional sly smiles and sign for I Love You. I also happened to sit next to someone that grew up in Jeff's neighborhood. It didn't take long into our conversation when she realized that she knew Norah's story. The kid's a celebrity, I tell you.

After the event, Norah and I joined Harper's class for some treats and a little social hour. Most everyone left, but Harper lingered with his friends while he also packed up his things to go home. One of his friends had been looking at Norah and I. He asked a few other kids if I was his mom. He finally asked Harper, to which he replied "Yes, that's my mom and my cute little sister." His friend quickly asked the question he was itching to ask someone, "What happened to your sister?" There it was. The first of many times, in just one of many forms that Harper will be asked about Norah's differences. In that moment, I was so proud of my son. He didn't understand what his friend wanted to know. Nothing happened to her. Nothing was wrong with her. He just knows that she is his cute sister. Harper's expression prompted the boy to repeat his question, this time pointing to his own neck. I could see Harper's brain scanning all of the things we've told him about Norah to help him understand that all people are different, and that the only things that make us "normal" are in fact, our differences. He told his friend that Norah needs help breathing with a mask. I of course didn't want to intervene. The boy wasn't quite satisfied, because he wanted to know what on earth was that gigantic white and blue thing around her neck. They ended up being distracted by another boy running around the classroom with a small flag, playing "good Army/bad Army".

There will always be something. There will always be stares and questions. There will be curious people, rude people, awful people, and wonderful people. My top goal aside from my kids' safety, health, and happiness is raising them to be confident in who they are, and I know much of that comes from example. I want us to be proud of one another. Our Deaf Mentor and I recently had a conversation about this - particularly regarding acceptance in being Deaf. She has told me before that watching Harper makes her proud, and that it is priceless to have a sibling who is so supportive of who you are. I don't know what the future holds, but I do have every confidence that this sort of support is going to go both ways. I like to think that Norah will be just as protective of Harper as he is of her. 

A Difficult Week

Those that didn't know me would have thought I was a mom going through a crisis for the first time. They probably would have felt pity for me -  a fearful mom in unexpected and new territory. It was partially true, but the deeper reality was that I was having some serious PTSD. I will however say that I received great comfort from family and friends, who helped me cope.

That first night post-op from Norah's c-spine fusion was awful (though her surgery itself went really well). She was in so much pain. She was able to sleep the next day, but in the middle of the second night, threw up and breathed a bit of it into her lungs. I can't tell you how many middle-of-the-night emergencies we've had with Norah. We moved to the PICU, which was when I started to feel the old nag of emotions bubbling up from living there so long. After some time in the PICU, we moved to the floor. But overnight, again, she began to decline all of a sudden. the respiratory therapist recommended a PICU consult. No. Not again. I didn't want it. "They'll take her. I know they will. I don't want them to come." Those were my exact words. But there was no stopping it from happening. She wasn't getting better, so I agreed to their consult. I was just relieved to see familiar faces come upstairs. It was becoming more and more clear that we were going to have to go back. The doctor who once told us three years ago that our daughter might die, was here to tell me that Norah needed to go back to that place. Back to that place that toes the line between being the most wonderful beautiful place and being the saddest, most horrible place. They wanted to put us in our old room, bed 14, but I asked them not to. I would have begged if necessary, but they had no problem finding another place for us.

Friday was awful. One of her most frequent and beloved caregivers there, a Nurse Practitioner, looked at her with the most genuine concern. I could tell he was worried. He looked at Norah as if she was his own child. I've never quite seen anyone look at her that way aside from Jeff. Sure, people love her, but this was different. It was so touching. He spoke with a somber but hopeful tone. We all had a hard time getting Norah stabilized on the vent. For a bit, I thought we were going to have to intubate her.

I saw something that I've only seen happen with her a few times during a code. No, she didn't code this time. But what I saw was a girl starting to give up. And it scared the shit out of me (no apology for language there). She and I had a talk. I tearfully told her that her mom was going to be selfish. That I couldn't stand it if she left. That I needed her to fight. She couldn't give up. Well, she didn't give up and I am so grateful. This last week+ has been one of the more difficult that we've had in a long time.

Based on her viral panel and presentation of symptoms, she was treated as having the nasty enterovirus d68. Don't worry - if you or your kids get it, it wouldn't likely do you you what it did to Norah - unless you also have airway issues and/or lung disease. It is because of these things that little colds can really do a number on her.

So we've come home with our old friend, the Trilogy ventilator. We're using it at night for non-invasive bipap. Norah was pretty upset when we put her on it last night. She thought that since we were home, that we were done with those shenanigans. The C-collar she has to wear (for four months) was also frustrating for her since she can't lie on her belly. Hopefully it just will take some time to acclimate to this new normal. Again. I'm just happy that we are all together again. I missed Jeff and Harper like crazy. And poor Jeff didn't exactly have an easy time trying to juggle between being supportive at home and the hospital.

As for Harper, the poor guy has been having a hard time. He told me yesterday that he had been sad because he thought that I wasn't going to come back. He was serious, too. We hadn't seen each other in person for over a week, so it was understandable. As much as we try to make things normal for him, it just isn't possible. So we' have some work to do with getting both kids to happy places. Hopefully it happens sooner than later.

Another Surgery

Norah had yet another trip to the OR on Monday. Many (if not most) special-needs moms could tell you exactly how many times their child has gone to surgery. I lost count long ago. This time she went in for her trach scar revision, and it'll be great to see how everything heals. I hope she grows to be proud of her scar and what she's overcome. Our ENT also noted that her mid-airway still has quite a bit of tracheomalacia (her airway doesn't stay rigid & open - think of a straw that is pinched half-way closed). He knows that I love pictures so brought some out to me. Hopefully she grows out of that floppy airway. This particular trip to the OR was particularly stressful because it was her first since having her trach out. But everything went smoothly without any issue. We walked away feeling relieved that Norah wouldn't need surgery for a LONG time.

We were wrong.

We went to Shriner's to follow-up with her Orthopedic doctor. We've known that Norah's neck isn't totally stable (she has excessive movement between C1 & C2) but we've hoped that over time, things would ossify and strengthen & she'd be fine. Turns out, it's gotten worse. We have a bunch of appointments next week, but I'm under the assumption that they're going to want to fuse Norah's neck within the next couple weeks.

I know that fusion will help her be stable, safe, and prevent spinal cord injury. But I am scared. I am scared of pain and her own fear. I am scared she won't want to come off the ventilator post-op. I am scared of permanent injury. I am scared of death. Of course, not getting this surgery could lead to those same things. So I know it is necessary. But that doesn't make it easier.

The thing is: I know Norah can do this. She has been through so much and has shown us that she isn't going to give up. I mostly worry about my own ability to hold it together. I hate seeing her hurt. I hate that I can do so little to protect her from the inevitable pain associated with her medical woes. I hate that our family will again have to taste what it is like to be apart. I hate that Harper has to see his mom cry this way. I hate that he has such worry about Norah in the hospital. He said to me recently, "But mom, I thought we got to keep her. I don't want her to go to the hospital."

So again we go through another challenge together. Part of me has forgotten that life in the hospital. I don't know how we endured those 23 consecutive months. But then the other part of me remembers that time with such distinct clarity that it adds to the anxiety and fear of going through that again.

I'll try to keep you all updated on her upcoming schedule. Here's to strength, bravery, and love getting us through.

Bare Neck

Tonight I saw Jeff doing something that I find myself doing quite often. He and Norah were playing on the floor, when he casually lifted her hair up off of her neck. "Are you admiring her bare neck," I asked him. He sure was. We both do it. We look at her in awe. No trach ties. No trach. No ventilator. No ointments, no skin breakdown, no trach smell. No secretions, no suction catheter, no drain sponges, no CPT. No more hoarding ten different types of wound care products. No more hoarding medical supplies at all in fear that we will run out (which you better believe happened and was AWFUL). I could go on and on.

Truthfully though, while we had it, the trach wasn't so bad. Neither was the vent. I'd go as far as to say that I loved them both. Without them, Norah wouldn't be alive today. Yet we sure love admiring how far we've come. The girl who was stuck in the hospital for 23 months on an ICU-only ventilator took less than a year to shake her life support. Life is good, and we're sure to notice those little things that make it so great.

Preschool Plans

Sometimes I can be pretty cavalier about things. The truth is that I'm not always so confident. Of course I knew that Norah would some day get off of the vent and decannulate. There was never a doubt in my mind. I don't really have a whole lot of doubts when it comes to Norah and what she can and will do. I guess my doubt is sometimes in my own ability to facilitate some of those triumphs. I also have doubts in my ability to cope with everything with a smile. Sometimes I'm not sure if my smile is genuine. I absolutely love my life. It is beautiful and wonderful, and I wouldn't trade it for any other life. I have found fulfillment in ways I never could have imagined. But sometimes when I look ahead, it all seems so daunting. Yes, we've gotten this far - and what a challenging journey it has been. Again, I don't ever doubt that we'll meet our goals. I suppose, like most people, I just get a little tired.

Though she is a very smart girl (sometimes too smart for her own good), Norah is pretty behind developmentally. She turns three in a few weeks but she has yet to walk, stand, or even get to a sitting position on her own (though she's close). She is improving, but her expressive communication is lacking too. We recently made the decision to enroll Norah into preschool at the Jean Massieu School of the Deaf in Salt Lake City. Norah is hard of hearing. Though we have a Deaf Mentor (one of the most awesome people) who comes weekly to teach us American Sign Language, Norah will need even more exposure to ASL if we hope for her to be fluent. As for us, we're working on our fluency too. I truly believe that at JMS, Norah will be a "normal kid". I picture her at a typical school. She tires quickly, so would be lying down a lot. She would have minimal communication with the other kids. They would treat her like a baby, running figurative (and possibly literal) circles around her. She is not a baby, and I remind people of that often. At JMS, she'll be just any other kid there. Those kids are so accustomed to "different" that different = normal. She'll be ready to join Harper at our local elementary school someday, but that isn't just yet. Next month we have another appointment at Shriners to see how her scoliosis and c-spine (neck) stability are coming along. Cross your fingers for us, because her safety at school will be directly related to her neck stability.

Norah's formal list of goals on file is a long one. Will it be hard? Yes. Will we get there? Yes. Heck, I'm just thankful that we are facing these educational decisions and goals. It wasn't too long ago that we were facing different sorts of decisions - those that were necessary for her very survival. It's a welcome change of pace to be thinking about education and development instead of breathing and surviving.

Trach-free

I had this long, intense post written... when I accidentally deleted it. Yep, me - the person people turn to for computer help... I deleted the post and it auto-saved. Nice, huh? I just can't bring myself to re-write it. Perhaps you should be thankful that my other post was deleted... it was pretty long-winded (as I tend to be). But I wanted to break my blogging silence, at least for this one post. So where have I been? Enjoying life, of course. We've been living in the moment, and enjoying every bit of it.

The rumors are true that Norah was decannulated on June 4th. To say she's doing great would be an understatement. We're all adjusting to this new life. It's amazing what can happen in a year to such a strong-willed girl. She is strong, healthy, and enjoying her new trach-free life. We're all enjoying our new trach-free life. Norah is now in HD. She is more vibrant, active, vocal, mobile and just as sassy as ever.

The trach/vent mom in me will always be in there somewhere. But someday I'll forget the size and style of her trach. I'll forget her old vent settings. I'll forget the weight and juggle of equipment in my arms. I'm sure the first time I forget the oxygen tank (that is rarely, if ever used), Jeff, always the worrier, will be right behind me with it. And as we wean off of our private duty (night) nursing, I'm sure the trach/vent mom will be stirring within me, at the ready for any respiratory emergency.

Her medical journey is not over, but her rocky start is. She can finally breathe on her own. I can't even begin to express how thankful I am to all of you, to all of her caregivers, to technology, and to the love that has lifted her up and surrounded her since the moment she was born. Thank you for sharing in her journey... It isn't over yet.