A Swiftly Tilting World

As an adolescent, I remember reading A Swiftly Tilting Planet by Madeliene L’EngleAlthough the plot line has faded from my memory, the title stuck with me and many times in my life I’ve felt like I’m standing on land in motion. At times, life swells with great waves and earthquakes of change. The last year is certainly one of those times and I am still trying to find my footing.

Our little family trio went to the zoo a few weeks ago.  It was our first big outing as a family.  And I was ridiculously grateful for the trip. We’ve visited a friend’s house, church (during the week), and nearby parks, but this was a trip into the city and into a very public place. We orchestrated it as much as possible: Got there early, on a very hot day (okay, we didn’t plan that but it kept the crowds down), and stayed for under an hour, making it back home in time for her morning nap. We survived. And I was so relieved that we pushed out of the tight cocoon we’ve created for ourselves.

When I wrote my resolutions back in March, I’d hoped that the cocoon would be dispensed with sooner. And although I could have written about the daily ups and downs,  I wanted to write about progress. I wanted to feel progress. A momentum towards something amazing and new.  And, for me,  I didn’t feel that click forward until the last month. Now, with a little more hope, a little more energy and delight I can review the goals from many months back.

First, lets’s start with the big one: Sleep! Sleep! Sleep! I can’t tell you she’s a perfect sleeper (in fact, last night was truly awful), but overall she has vastly improved in the last month and a half. Combine that with the end of breastfeeding, and you’re reading the words of a new, improved, caffeinated woman. Cue the confetti!

I assume her sleep has improved because her reflux and her larynx have gotten better as well. She is still on one medication for reflux but we hope to start weaning that in a few weeks. Her larynx is still a bit of a mystery. It is much improved (not as noisy, no apnea) but there is still improvement to be made. I guess. We will take her in to a doctor’s appointment in August, hopefully we will have more information then.

I am reading On Fire by John O’Leary. He has an incredible story about surviving a lethal fire when he was nine. And how he has used that experience to live, what he calls, “a radically inspired life.” That jargon is a little obtuse, but how he breaks that down in his book has helped to clarify issues I’ve been struggling with, no only the last year, not only after Jordan, but much of my life. There’s so much to be said, so much to share from this book, but I will just start with this simple realization: Having Mariana forced me to grow as a person, to stretch way beyond my comfort zone. And with stretching and growth comes pain. So all my complaining, my fear, my second-guessing, my frustration were a result of change. All my times of “Why me?” were opportunities to engage with God and work to be better. Yes, yes, you say, haven’t we already covered that? Yes, sort of. The problem is I’ve felt guilty about the struggle. I thought I should have been immediately joyful and content. But there was (and still is) too much to sift through. Too much baggage and fear of the unknown. It was normal and down right understandable for me to feel out-of-water and uncomfortable during the last year. Having said this, overall I do feel more courageous, and more buoyant. There are still times when I feel a rush of fear wash over me. I want to be the very best Mom! But I am trying to engage with it, and not feel like I am letting everyone down.

I do continue to miss Jordan. Although, I want to run far away from, what at times, feels like an anchor, I have to accept that feeling of loss will be a constant thread in my life. I am grateful for it…most days anyway. It means I loved greatly. That’s pretty amazing.

Lastly, although my husband may disagree (I give him such a hard time), I do feel more grateful for everything in my life. Do I lose sight of it? Yes, probably on a daily basis. But I think I am picking it back up and giving a little tug of gratitude on a daily basis as well. So, although my world has tilted with the arrival of my daughter, I’m going to grab on tight and enjoy the ride as much as possible.

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Dughri-Straight Ahead

I know. Where have I been? It isn’t like I haven’t had lots and lots of thoughts–I’ve had thousands, maybe hundreds of thousands even.  But by the time I get a chance to write these fantastic, amazing, introspective reflections down, my brain is fried and all I want to do is shove a cookie in my face and watch Veronica Mars. So has the last couple of months gone…

I was overjoyed that January ended. The month was brutal, more so than usual. Be gone you dreaded days of frigid temperatures and darkness! February and now March have flown by and Mariana is 7 months old. Overall, the stress of her condition and the fear that have accompanied it, have eased. But there are moments. As the weather improves I am thinking about taking her out to parks and maybe for some visits, maybe more…But the worry of her catching something still permeates every corner of our lives. Which, to be honest, really sucks. I want to push passed the anxiety but she is still having noising breathing and pretty bad GERD and reflux. The doctor says to expect an improvement around 9 months, but there is no way I can continue in the bubble as it has been. I’m just praying for guidance and faith.

I didn’t make any New Years resolutions in January. As mentioned before, January stunk. But I am ready to make some now. As inspiration I draw on the Lebanese word: Dughri. It sounds more delightful than it looks in print. It sounds more like Dig-ga-ry. Say it fast, while jutting your hand forward. Congratulations, you just told someone to keep straight. I chose that word because it is about forward motion. No more languishing in the past, worrying, worrying, worrying. Instead, here are my ambitions for the near future:

1) I want to be courageous. Not fearful that something bad will happen. 2) I want to be happy. Not sad, missing Jordan. 3) I want to be grateful. This little baby dynamo we received is so full of joy and glee. 4) I want to sleep. This one might be tougher as she is still struggling with some issues, but I want to put it out in the universe and hope God says, “Absolutely, you should sleep!”

I worked hard to create a life after Jordan passed away, and it was difficult to let the comfort of that life dissipate amid the drama of a newborn.  It has taken almost 7 months to realize that that life is dead, and still longer to be excited about the blossoming of the new. I hope by putting these goals out there into the ether, positive energy will swarm and wrap around our lives. I am trying to be open and receiving for a different life. The idea stirs a little panic in my chest but I pray that God will fortify me for all the new, wonderful happenings that may arise.

 

A New Year and old problems

IMG_5735Mariana has evolved into a super cute little cherub who can babble, grab, swat, and pull a fist full of hair–hard. But although she has matured by leaps and bounds, she is still contending with serious GERD and reflux. When will it be over? I scream skyward. She was almost completely free of apneas until this last week when her GERD worsened. (sigh) Oh well, we will just keep doing what we are doing.

But it’s a bit depressing. For a moment, we felt a sense of things lightening, some of the weight lifted off our shoulders. We could worry a little less, get out a little more. But with the return of apneic episodes, everything feels as it was for the most part.

We did hire a nanny. And slowly (very slowly) I have been able to clean and organize the house, which helps my mental distress. This is only the nanny’s second week, so God willing things will feel better in a month or so. I am still sticking very close by. Mariana seems alright with the nanny but it will take time to build real trust.

I had a list of things I wanted to get done this month. But I guess I will be okay one more month without a haircut or exercise. What’s the point anyway? It’s January. Cold and snowy with nothing to do. I think I just need a sunny day…and a pedicure.

The Good Stuff

I have bombarded the internet with my parental insecurities, so I thought it was time to put out some of the good stuff. Mariana is 4 months and although this period is a little sticky, there are moments of amazing growth, cuteness, and love. I figured the best way to enjoy them was through photos. Some of you may have seen a few of these, but they are my favorite photos this week. Enjoy!

When does it get easier?

We are stuck in the 4 month regression. At least,  I hope that is what is going on right now. She is more irritable, more tired, yet more prone to not sleeping. Somethings are better. There are fewer apneas…well, I guess that is it. She still has plenty of GERD and now she is spitting up and officially has reflux. I am cleaning all my nursing shirts twice as much. So that’s fun. (Deep breath in and out)

I have been trying to find the ease in all of this, but it is difficult when the little one is struggling with the basics, like sleep. I know we haven’t helped by rocking and nursing her to sleep, then going on to hold her in our arms all night helping the sleep along. But it seemed like the right thing to do when she was so small and fragile. Then we were too exhausted to change the habit and now we are just trying to make it through this fussy period and hope it all miraculously figures itself out. (Deep breath in and out)

I wish I knew what the heck I was doing. I really feel like such an amateur, just kind of looking at this baby and hoping she tells me what is going on. I was watching a friend’s baby last year, she was 6 months and it was easy. I didn’t think about it. I just played with her until she was tired and then walked with her in my arms and she fell asleep. Now I am all concerned about schedules and routines. And Mariana is all tightly wound and gets overstimulated easily. She just tries to take in every little detail. She’s intense but maybe I’m over thinking it. In fact, I am sure I’m over thinking it all. (Deep breath in and out)

I just keep feeling like there is something blocking my access to ease and gratefulness.  It feels like a huge column in the middle of the room that you just can’t see around and you keep skirting around its perimeter trying to get a good view, but you can’t. Is it the sleep deprivation? Possibly. I have always needed more sleep, not less, so months of 5 hour nights certainly erodes the brain and thus the confidence. (Deep breath in and out)

So yeah, I just need to breathe and sleep. Sounds easy doesn’t it?  I don’t know how it will happen, but I am praying God has the answers because I sure don’t.

 

The Good, the Bad, and the Land of Acceptance

There isn’t much time. There never is. So, I’ll just break this down:

The Bad–My husband has been full-on working (not just admin stuff) for 2 weeks straight (including weekends) and that leaves me 90% on my own with the new little bundle. I managed just fine for the first week, but we changed meds for her reflux and something went wrong. She was off–clingy, yelling, crying, and all around unhappy. So we changed back. Now the poor thing is pretty constipated, but she is at least acting like herself.

We continue to struggle with the apnea and the reflux. I have started to try to put her down for naps or at night, but she wakes up a lot with the reflux. I get frustrated when it comes to putting her down. I want it to all go right and perfect immediately. Logically, I know this is unreasonable. But I’m tired and I just want something to be easy, but no luck.

Sidenote: What I really want is Mrs. Doubtfire to come live with us and take care of everything. Sure, she was fictional even in the movie. (And actually it makes me a little sad since I miss Robin Williams) but it would be great to have someone to take care of us (my husband and I) while we’re trying to take care of this little one. One can dream…

Anyway…

The Good–She is three and a half months and charms with ridiculously cute expressions (and now she giggles!). We spend countless hours divulging important secrets over diaper changes, or hanging out in the Boppy.

The reflux itself is the same. Maybe, just maybe slightly better (sign of the cross, knock on wood, throw salt over my shoulder, fingers crossed)…very slight.

Our visit to the pulmonologist was reassuring. He said the same thing our pediatrician has been saying: “She’ll grow out of it.” But….When????? We might possibly do a sleep study to evaluate the apnea, but I am not sure we are ready for that. We are visiting a speech therapist to make sure we can continue to feed her well. She is doing alright, some choking while feeding though. And eventually, I would like to transition to bottles so I can leave the house for longer than an hour and a half.

But I am not sure anything will change.

I have this feeling like we are just supposed to hold steady and plug away. Just hold the course and our breaths and wait for the winds to change. We’ll see…

In the meantime, at least I am not fighting the diagnosis so much. I am frustrated that we are still on (what feels like) a hamster wheel, but we are managing and I am trying to be grateful for that. Overall, I am trying to be more grateful but some days I fail miserably. I don’t think the holidays will help. In my mind I see people shopping and meeting up and wearing red plaid jackets and matching hats as they take in the holiday season.  And here we are watching out the window as they whistle Christmas tunes and laugh at lunch outings. Oh, is that not happening? Well, it’s fun to romanticize it all.

I did, miraculously, get my tree up and decorated. So.–on that positive note I shall leave you with a photo of my tree. IMG_5517

Jordan’s 5th Birthday

Today Jordan would have been, well…might have been five. The likelihood of him making it to five was slim, but we fought HARD anyway. Instead, we got 16 months. Longer than the doctors expected and much less than we wanted. Some people may think us morbid or stuck or…who the hell knows… but the bottom line is losing your child is a lonely island. People forget. And although there are support groups, we never found one that fit with our situation. So, we live with it alone. The birthdays come and go and few call or remember. And I understand. I really do. I do not place myself as someone better at remember others’ sorrows. But my son is scrawled across my chest and no matter how many years pass, or even now, with a new little one to occupy 99% of my brain, Jordan is there–part of me. The world keeps turning, but for us, a piece of our souls are and will be stuck in time.

I miss him.