Oh 2020

I’ve started about 15 different posts this year but haven’t been able wrap my thoughts up as nicely as I wanted to so they never made it to “publication.” I’m not sure I’m wrapping up my thoughts any better now, but here goes nothing…

Here’s a quick recap of 2020 in our house:

-    In January we had an amazing appointment for Owen with a doctor in Toronto who set us on a clear path for his care. It was a long but fruitful appointment and I am so happy we went. We also made a weekend out of it so that was a nice mini-vacation!

-    February /March – planning planning planning all these fun trips, birthday parties, etc.

-    Mid- March – Screeeeeeeeeeech to a halt. Why did we book all that stuff? Hello quarantine. Mommy is now thrust into the role of a school teacher AND a therapist…ut oh. Silver lining…Evan took his first steps while daddy was working from home so he got to see them!

-    April/May – Welcome to zoom EVERYTHING. Play dates, school meetings, birthday parties, violin lessons, family gatherings.  We even resurrected an old printer from our basement to assist with the school stuff…and to print about 400 scavenger hunts.

-    June – LOTS of outdoor activities…hiking, biking, tennis, general exploration (and 400 scavenger hunts). Kids got fishing poles at the end of the month and I think they used them nonstop for two weeks before our vacation. Also, am I the only person who watches TV and gets all judgy when the characters aren’t wearing masks, but then remember it’s not real life and chills out?

-    July – trip to the Adirondacks…lovely time away, more hiking, exploring, swimming and fishing. We ran out of chocolate for our s’mores and thus, the s’mornie was invented by Matt since we had brownies on hand – and of course used them to replace the chocolate. Yum.

-    August – absolute stress ball (me) about the upcoming school year. Hybrid or all virtual? Why are people bringing up taxes during a pandemic? And, to all those calling teachers lazy and telling them to get themselves back in the classroom – 90% of my friends are teachers and lazy is a word I would never even consider using to describe them. 

-    September – Masks on and to school kids! Commence crazy schedule of hybrid for two kids, 13 therapies for O (12 on zoom) and a wee little 1 year old running around.

-    October – Owen started scooting on his little ride on that we bought for him almost a year prior. It was surreal to see him moving on his own! One of the last weekends in October we had an unusual warm up and were able to gather our entire family to celebrate my dad’s birthday outside, masked and safely distanced. I can’t even describe how happy I was after that, and was also so grateful for that opportunity. 

-    November – School shut down in person learning mid-month so we went all virtual and no more swim therapy for O. Our first Thanksgiving in the garage!

-    December – First week of December Owen started taking steps on his own using a walker! We were so ecstatic and although he is still super unsteady and cannot be left even for a hot second, it is hopefully the beginning of a new form of mobility for him. Christmas via zoom and Chinese food for dinner! 

 

A week or so ago, I was talking to my mom about this year in general and she brought up something I have often thought about…which is that everyone is wishing 2020 away but there is no guarantee that 2021 will be any better. I really do consider myself optimistic and always hope for better days, but deep down I knew she was right.  I told her I felt that way about 2017 after spending so much time in the hospital with Owen, and then the beginning of 2018 was so terrible that I was ready for 2019 by February! 

 

While there wasn’t any life-altering health issues for my immediate family, there were other things that happened to some of our close friends and neighbors that made a year of living on edge even more nerve wrecking. And as a human being in general, it was a painful year. We can do better, and we ALL NEED to do better!

 

Each week Matt and I watch Judy Woodruff on PBS news hour and at the end they feature a handful of people who lost their lives to COVID 19.  It is a reminder that people around us are still dying from a terrible virus and their families are suffering because of it. And that, as a fellow human being, makes us feel some of their pain and suffering. It keeps the pandemic close enough to our thoughts so that we continue to make smart decisions for the greater good, and not because we are tired of not doing what we want to do.  

 

I have a lot of hope for 2021. And we will continue to take things day by day, hoping for a little more normal for our kids. More than anything though, this has shown us that there is no such thing as “normal”…it is “normal for now.” 

 

Things I am grateful for on this New Year’s Eve 2020:

1)  Every single front line worker that puts their own life and the lives of their family members at risk in order to care for others during this pandemic. 

2)  All the scientists out there who are all over this pandemic and are doing their best to get educated, thoughtful information out to people. Special shout out to Dr. Fauci.

3)  All the leaders who are doing what they need to do for the safety of all. 

4)  Everyone who voted in the election this year. They are all important elections...but this one was especially important.

5)  All of Owen’s therapists who continue to work with him and push him towards his goals even if it is all via zoom. While my preference is me not having to physically do their job, it has made me eternally grateful for all their hard work now and when they do get to be in person again. They know I’m tired of doing their job – and I know they are tired of watching me not do their job right. But day after day we show each other we are in this together, try our best, and well – he IS taking steps so it can’t be all that bad!

6)  Our kids teachers. They are amazing and are doing such a great job despite having to juggle a million things at once. 

7)  Instacart. Even with all their flub-ups and terrible substitutions.

8)  The PURA Syndrome Foundation and all they do to increase awareness about our sweet one’s diagnosis. That and for featuring him first in their most recent awareness video...https://fb.watch/2J4nXb6-YY/

9)  My 5 roommates who rode the emotional mommy roller coaster this year. They hung on tight and stuck with me. And I love each and every one of them more and more each day for it.

10)  My friends who rode the emotional pandemic roller coaster with me this year. What a ride friends, but I am so so very grateful to have had you all in my coaster car for that. 

 

Cheers to all for a happy, healthy, 2021! 

 

Let this little guy inspire your first days of 2021...

2 years, 3 months…

…a 6-week NICU stay in the hospital 

…3 other hospital stays

…5 sleep studies

…8 blood draws (not including the hospital stays)

…67 doctor’s appointments

…635 therapy sessions

Owen’s life sure has been busy! Clearly I have been reflecting on this time and how our lives have changed since our sweet one’s arrival. Why, you may ask? Well, after three rounds of genetic testing showed nothing, we had whole genomic sequencing (WGS) done and something actually showed up. We have a diagnosis. Whoa. Deep breath mama.

Owen has PURA Syndrome, a neurodevelopmental disorder, which is caused by the fact that one copy of a gene he has is not working properly. If you care to learn more about it, you can click here and read about it on the PURA Syndrome Foundation website. It’s newly discovered – 2014 – and just over 300 cases have been discovered world-wide. Yep. My boy is rare J No news here!

The handful of people that I’ve told this to so far typically ask how I feel about finally having a diagnosis. It’s weird – I don’t feel a whole lot. I thought maybe I’d be more relieved. Don’t get me wrong – I do have relief on certain aspects. I constantly had a pit in my stomach because his delivery didn’t go so great and a piece of me thought that if I had done better that day this could have all been avoided. But that pit is slowly fading now knowing it had nothing to do with that day. (Special shout out to Dr. Sara Berkelhamer here. She was Owen’s first NICU doctor at Children’s Hospital and within a few minutes of her team meeting us, she looked directly at me and told me that nothing that I did caused what was going on with him. I really really really wanted to believe her but always had a piece of me that didn’t. Thank you Dr. B. You were totally right.) 

After looking at the common features for the syndrome, 80-90% of them apply to Owen. So that, combined with the fact that we have watched him very slowly but steadily progress over the past few years, didn’t result in some overwhelming emotional reaction upon receiving the diagnosis.  Maybe I’m still processing it? Not sure. There is no crystal ball to see what his future will look like. All we can do is move forward, keep our faith and hope alive, and that is what we shall do!

Speaking of moving forward – remember all the previous posts where I’d cross my fingers that the next sleep study we could ditch the oxygen concentrator? Well, IT IS FINALLY OUT OF OUR HOUSE! His CPAP machine has replaced the need for the oxygen and praise God it is much quieter than the concentrator. That was a bittersweet moment for me earlier in October. 

I will take the next few months to really research into the syndrome so that I can be the best advocate I can for my son and the other 300+ kiddos diagnosed worldwide. Don’t be surprised if you hear from me in the future, attempting to educate and increase awareness. After all, what else would a mama do for her babies?

Speaking of babies – Owen became a big brother back in April, so we now have one girl and three boys (much to big sister’s dismay – but she loves her baby brother. And someday will realize how much more that works in her favor!). Over the past few months Owen has been doing more and more physical things that he never did before. Is it because he is growing and developing? Probably. Or is it because he has a super active, super physical little brother that is pushing him to do things he’s never done? Perhaps. Either way…life as a family of six has been an adventure. Navigating school, pre-school, 12 therapies a week and an infant is tricky, but we are getting the hang of it. 

I’ll leave you with this little chuckle…

I grabbed my kiddos water bottles to wash yesterday and I looked down at the silicon cover I removed from the metal water bottle and started laughing (and maybe had a few tears fall). I walked down to Matt, showed it to him and said, if only we took the signs seriously. I mean really, how ridiculous is this? I bought these water bottles about a year and a half ago...

Things I am grateful for this day:

1)     While I’m more often than not stuck in the day-to-day routine, my hubby keeps the bigger picture in mind and continues to think outside the box. Thank God.

2)     The Parents of PURA Syndrome (POPS) group that has so graciously welcomed Owen and our family into their support group. 

3)     That Halloween is over. Am I the only one that thinks it was more fun before we had kids? It’s still fun. Just not as fun, ha! (Perhaps it's the constant costume changes?)

Slow as Molasses - but still moving forward!!

(Skip down if you just want an Owen update J)

It’s pretty natural at the end of each year to reflect on what happened and the things you want to change going forward into the new year. My end of 2018 reflections brought me to tears – for no real reason other than the shock that I didn’t think things could get much worse than the end of 2017…and it turns out the beginning of 2018 was so overwhelming I felt like I was drowning (See side note below). To add insult to injury – I for some reason decided, after getting the flu and being sick for nearly the entire month of January, that it would be a good idea to train for a 5k run (this was courtesy of a Lenten Challenge by Catholic Women Run…I would’ve never came up with that idea on my own). Now, anyone who really knows me knows the following: 1) Me and long distance running have never been friends. I was a sprinter in high school…100m max. My coach put me in a 600m race once to see how I’d do and it was probably the closest I’ve ever felt to having a heart attack as a teenager and 2) Since college, me and running ANY distance in general are not friends. But, I needed to feel like I was making a true Lenten sacrifice that year. I, in some way, needed to choke out the first two months of the year from my brain with something that would really take my mind off of them. So naturally, suffering by running seemed to be a logical choice (I know. It’s ridiculous.). I think part of me really (un-Christianly) envies runners who enjoy it and even thrive off of it. What’s it like to not only enjoy running, but, actually have it be a somewhat euphoric experience and crave it? 

My Lenten journey did not bring me to an answer to those questions, in fact, it made me dislike running even more, and when that 5K was done in May (I made it to the finish line!) I “retired” immediately and every time I saw someone running I made a point to say a blessing for that person and thank God it wasn’t me! What my Lenten journey did reveal (through daily journaling, prayer, and some variation of training) was exactly what I needed: peace with suffering. (I’d like to just insert here that I absolutely realize my suffering is not near that of others. There are much much worse things to be going through. And everyone suffers differently. But at that moment of my life, that is what I felt, and that was exactly what I needed). That peace has offered me the ability to get through each day’s challenges and accept whatever I come face to face with. Does that peace wavier from time to time? Of course. But it’s a lifelong process, and Lent 2018 gave me some important tools for moving forward with peace in my heart.

So what about this year? Lent couldn’t have come at a more perfect time. I sit here, almost 9 months pregnant with our fourth child (due in late April), and I’d be lying if I wasn’t fearful for what managing a household with three children, one with significant delays and needing a lot of attention, along with a newborn babe. And I’d also be lying if I said I wasn’t fearful that something similar could happen to the new baby that happened with Owen. So, my goal for Lent 2019 is to attempt to replace fear with peace. I know it’s not going to be easy. But a little peace in my heart going into life as a family of six would do everyone some good! 

Owen Update

He is still undiagnosed and we are still working with genetics doctors, however, everything that we have tested for has come back negative. Back in November, O had surgery to remove his adenoids in hopes it would help his apnea. Well, it definitely did help, however not enough for it to be out of the severe range. He is so close though. Either way, an improvement and I think even since then he has improved a great deal. He had a sleep study the other day to give him some more time after the surgery to heal and to test out whether or not the oxygen he is on at night helps his apnea at all. So next week we will be able to see if we can really ditch the oxygen concentrator or not. Looking back to my December 2017 blog I was so hopeful that we were going to ditch it then...ha! I am more hopeful at this point, however, a lot more realistic and accepting if he’s just not ready. He continues to move at his own pace and that is fine by me! 

Big physical changes since September – he holds his head up no problem, is sitting on his own for extended periods of time, can roll over from his back to his belly and is really using his hands more to grab things. His feeding has improved significantly and we are working with a speech therapist to get some basic communication down (non-verbal). He does make sounds, just not words. We recently had a “family meeting” with all of his therapist and looking around the room I couldn’t have been more grateful for all of his amazing therapists – which I lovingly now call the “dream team” because they are just that! 

Things I am grateful for on this last day of March:

1) My body’s ability to grow and nourish our baby. And the strength to carry a 20-month-old child around with a large belly.

2) Millie’s Kindergarten teacher. Talk about hitting the jackpot – she has really fostered a love of learning in her so early and I am truly grateful for that.

3) O’s Dream Team: Danielle, Kim, Marie, Stacy, Denise, Jackie and Jessica. They really are the best!

Side note:
Every week I load my boys into the van and drive to O’s swim therapy. On the way Luke insists we listen to a CD that we got from Vacation Bible School last summer and for months, song #2 just put me into tears, and in particular these lyrics…

I won't fear what tomorrow brings
With each morning I'll rise and sing
My God's love will lead me through
You are the peace in my troubled sea
You are the peace in my troubled sea

My lighthouse, my lighthouse
Shining in the darkness, I will follow You
My lighthouse, my lighthouse
I will trust the promise
You will carry me safe to shore
Safe to shore
Safe to shore
Safe to shore

Here’s the whole song, My Lighthouse by Rend Collective (which, the version on the kids CD is much more up-beat and “kid friendly”): 

Not fearing what tomorrow brings. God’s love will lead me through. And even in trouble, He will carry me safe to shore. Phew!

Aaaand it's September!

Life does have a way of running full speed ahead, or at least feeling like it is. I was doing so good keeping everyone updated and then I just fell off the grid again. Sorry about that – but I know the people reading this understand. So. Updates since February…

After we somehow managed to survive the colds of March, April and May, we finally got a break in June…woohoo! Honestly it wasn’t so bad, and I think we were so numb to the illnesses that occurred in January and February we just became pros and got out the cold remedy arsenal to get us through to summer. 

Owen has made slow but steady progress over the past six months. He is holding his head up much better, really starting to stiffen up his back when you hold him and a couple weeks ago he (in his sleep) rolled from his back to his belly! He’s done it a couple times since too which we are pleased as punch about. He’s getting a lot of therapy – six different 30 minute sessions a week and two more to be added in the next month or so. (Side note: his therapy is entirely funded through the Early Intervention program in New York State. I will gladly play NYS taxes knowing that some of our money is going towards programs like this for kids who need it!) His therapists are amazing too, we are so blessed with a team that just helps him the way he needs it and he really loves them (even though sometimes he cries when they make him work hard!).

Big boy got up early to see his big sister off
to school on her first day!

He has a sleep study again this week (prayers please!) so we can see where his apnea is at…which I think it is slowly subsiding as he grows bigger and gets stronger. He has had two rounds of genetic testing, all of which have come back negative so he remains a little enigma. I think I mentioned this in an earlier post (maybe not?) but I am ok with him being a little enigma. He’s just going at his own speed and only time will tell what his limitations may or may not be. He still is as sweet as pie and has a smile and giggle/laugh that will light up a room. 

My big girl started Kindergarten this week. I had two goals: 1) Get her on the bus without her crying/refusing to get on and 2) Have the bus pull away before I started sobbing so she wouldn’t see me. Thankfully we accomplished both, and although there were tears the rest of the week, we made it through and I’m hoping for a better week this week. I know it will get easier as time goes on but each day seems to bring its own adventure of sorts and I’d kind of like to go back to boring (I’m laughing in my head as I just wrote that, boring, what is that?).

This one was a tough one for me – relinquishing control not only to my daughter and her independence but to the adults and children that surround her. Did I teach her enough so that she would be successful in school? Is she going to do what is right? Or is she going to pick up bad habits from other kids?  It took me awhile to think and pray about what I wanted to tell her before she went to school the first day, this is what I got out: I know you are smart and you are going to do well in school and love learning. All I really want to hear from your teacher though is how kind, caring and helpful you are not only to her but to all your classmates. Do you understand? She responded, yes mama, and we went about our nightly routine. Now, all I can do is pray she exudes love and kindness. Well, I can also remind her every so often too J

I promise going forward I’ll try and do a better job posting updates!

Things I am grateful for today:

1) The simple things in life that bring great joy. Like Luke mis-pronouncing a name and Millie laughing so hard she gets the hiccups.

2) The kids’ neighborhood friends. They and their parents are God-sends!

3) Our access to amazing education. We are very very blessed.

2019?

Dear 2018 –

I have had enough. Seriously. I’m tired of the sickness. I’ve had enough of the flu, coughing, runny noses, vomiting, and fevers. I’ve had enough of the hospital visits, doctor visits, and Lysol-ing my entire house multiple times. I want my nice hands back. You know, the ones that aren’t dried, cracking and bleeding from washing them so much. Finally, I want to stop worrying all the time. I know as a mother this is impossible. But a little less worry would do me good.

Instead of skipping over you entirely, I’ve decided that as soon as my 6-month-old gets out of the hospital this time, I’m starting you over. Really. Sometime in the next few days, it won’t be early February for me. It will be my new January 1. And if we get sick again, I will start over again until we can move the healthy train forward. Seriously, enough. Give this mama a break.

Kind regards,

Me

I know I was meant to be a mama. I love my kids so much I think my heart may burst. I love my husband so much for helping me produce such delights. I don’t want to rush this time because it is precious and I know it is just a blink in the larger picture. But, I really need the sickness to subside. Or just lessen even for a bit. I need a minute to breathe.

After I got hit hard with the flu a few weeks ago, I was laying in the ER at 2:30 am one night, and my mom (who graciously took me there so Matt could stay with the kids) put down the book she was reading and said, “I never told you the most important thing about being a mom. You have to take care of yourself first.” I smiled and rolled back over to sleep, all while thinking “bull****.”

Why? I never once remember my mom putting herself first. I often find myself wondering how she did it with six kids. I think back to what my mom was like when we were sick. All I can remember is her always being there. Her love. Her constant attention. I know there were times when all 6 of us were sick. I can’t believe she still has hair left. Maybe she did put herself first but was really good at hiding it? If so, I need to work on that. Because I was miserable for a few weeks there. And the best I could do was the bare minimum for my kids.

I walked to Mass at St. Louis church from the hospital on Sunday and I’ve said it before – but wow, was I meant to be there that weekend. From the readings, to the homily and then the little faith reflection in the Bulletin afterwards (see below)…it was like I had a direct line from God that day. Despite all the illness, we are all doing fine and recovering. And we will continue on, germs or no germs. It’s all good. “For He is good…He heals the broken-hearted and binds up their wounds.”

I’ve spent a lot of time thinking over the past few months how easily we take things for granted. Obviously the first thing that comes to mind is our health. Which I was super grateful for feeling better after really 4 weeks of being on the down and out. But even looking at Owen and seeing him still unable to continually hold his head up at 6 months, which is something that typically comes to “normal” babies around 3-4 months. And seeing how hard he works to use his arms and grab at things.  It just came so naturally and easy to my other two kids, but he has to work…and work hard. For what he’s been through and will go through until he’s better, he really is a strong boy. And I will continue to appreciate his hard work in accomplishing each and every milestone that came so easily to his siblings.

I hope you take nothing for granted. And I hope you got your flu shot…this one is no joke.

Happy January 2^nd everyone!

Things I am grateful for today:

1)    Good reports from Millie’s pre-school teacher. She loves school, and that makes me really happy she will hopefully not run screaming out of Kindergarten next year.

2)    Our house. I love being here and have a renewed appreciation every time I have to be away.

3)    Healthcare workers who choose to take care of babies and kids.