Just wait (part 1)

Darkness. Crying. Questioning. More crying. How did this happen? What did I do wrong to cause this? Will the baby be ok? What about John and I, can we do this? Will this kid know us? Will this child love us? Will Johnny and David feel neglected? Will I ever smile and laugh again? What is going to change?

One year ago today, was our Diagnosis day. It played out in a fortuitous manner. I thought I had the ultrasound on a Monday, so I had arranged for my mom to come sit with the two older boys at our house while I ran to the OB, had the ultrasound done and then came right back. We weren't going to find out the gender and this was the third kiddo, so I didn't feel like it was going to be an eventful day and I was fine to just go alone. When I got to the office to check in, they didn't have my appointment in their schedule. They didn't have any record of me making my 20 week appointment/ultrasound. How is that possible, you make the next appointment as you leave from each appointment. I don't understand how it happened, but I am appreciative it went down like that. I went home with an appointment to come back on Wednesday. For some reason, on Wednesday, my mom decided to come with me and we brought both older boys. For this, I am thankful. I am glad that I didn't face this day alone and even though, I am sure, my mom remembers the day differently and probably feels that she didn't do much, I can't imagine being there by myself when it all went down. I was excited to let the soon to be big brothers see a picture of their younger sibling and help them to understand more of what was happening inside mommy's big ol' belly (I would love to say it wasn't that big yet, but let's be honest...big 'ol is probably a nice way of describing the bump at this time). During the ultrasound, we were lighthearted, joking around and not really paying attention. The tech asked us if we wanted to know the gender and since we didn't, we should turn away. It is crystal clear in my mind. Johnny had on a red shirt and wanted to hold hands with me while they were rubbing my belly with the wand. Even now recounting that day and moment makes my stomach turn and takes my breath away. The tech was not joking around with us, she did not seem to interact with my beyond adorable boys, which is odd because they are hilarious (crazy, but hilarious). Side note, I am not biased. I remember thinking she was quiet, but didn't think much of it. When we were all done, she left the room quickly and it definitely caught my attention. She came back in after what was probably 2 minutes, but felt like an hour, and said the doctor needed to talk to me and would I want to do it alone or with my boys and mom. My knees buckled and immediately tears began to form. Something was wrong. Something was very wrong. I couldn't breathe. I couldn't see. She walked us down the hall to a different room. There was no hiding my tears. We sat in the different room for who knows how long. I couldn't catch my breath. Johnny asked me why I was crying, was I hurt? Was I sad? I just hugged him close, I didn't know what to say to my 3 year old. Yes I was hurt, yes I was sad. So I just hugged him and tried to breathe. Finally, he very solemnly admitted that he had to use the bathroom. He was just recently potty trained and he didn't quite know how to hold it long enough for us to wait for the doctor first. So my mom took both boys and went to the potty. While she was gone, the doctor came in. For some reason, I remember being able to control myself while she spoke. She sat directly next to me and leaned close as she spoke, like she was saying something shameful. They saw something on the ultrasound, the baby had an opening in the spine. It is called spina bifida. Had I heard of it? It is permanently disabling. They want me to go to a specialist to learn more. My mom came back in with the boys and I, once again, lost my marbles. I asked the doctor to explain it again because I couldn't form words to say it out loud. She explained it again to my mom. Once again, Johnny was beside me asking me what was wrong, why was I crying. We eventually walked out through the waiting area and I was very aware of all the eyes on me as it was clear I couldn't pull myself together. I was the person in that room that everyone was glad they weren't. I was the cautionary tale that things can go wrong. I remember getting to the car and somehow loading the boys in and I told my mom that I wanted to drive, I needed to be in control of something. I needed to have to think about something other than what was happening. It was very surreal and I was hoping to wake up from this nightmare at any moment. I laid my head on the steering wheel and gave myself a pep talk. Get home. Just get home. Get your boys back to their toys and their safe place so they will stop worrying about you. Drive. Once we got home and after my mom had called John at work, I escaped to my room and curled into a ball and allowed myself to completely crumble. I have never cried like I cried then. I distinctly remember shaking uncontrollably, thinking I couldn't stop. How was this going to end? Will I cry here, like this, forever? I felt sick, not nauseous, not a headache, just sick, like my body was failing me. I remember feeling betrayed that my body couldn't do what it was supposed to do. My job in this deal is to make and carry a healthy baby and I was unable to do it. Every mom wonders if they will be able to do the mom thing, no matter what number pregnancy it is, if they will be good enough. If they will be the mom they always pictured themselves being. I felt that the glaring answer to this, for me, was a loud and definitive, 'NO'! I had already let down my baby. This was the darkest and worst morning of my life. I will always remember it as vividly as if it were yesterday. I don't regret all the feelings I had that day. I don't regret the sadness and the grief. I had to go through all of that. But if I could say one thing to that me, if I could get a message back to diagnosis day Sarah, it would be....just wait....

Stand Up

Even though I knew this was going to be a milestone year for Thomas, this moment with his AFO (ankle foot orthotic) on for the first time will be forever etched in my mind....

The look on his face when he stood for the first time was one of joy, confusion and determination. He loved it. Something he has wanted to do for so long and he was suddenly able. I know this isn't the first time that he has accomplished something that was such a struggle for him, and it certainly won't be the last, but to see him do it for the first time still brought a tear, or twenty, to my eyes! Love my guy!

Diagnosis Day - Year 2

It seems like a funny thing to recognize the anniversary of this day. Last year I wrote about the diagnosis day experience and what I would say to myself from my rear view perspectacles, here and here. This year what strikes me most are the lessons that have come my way thanks to my little 4-eyed man (note: yes, I can call him 4 eyes, but the first time some little smart mouthed nugget does, we will have words).

Our world has grown thanks to this little boy! In a beautiful way, we have been opened to so many new people, all of whom have had an impact. From helping us find the right surgery to help Thomas breathe to giving advice on which color glasses look great on him. These communities of people that we have been connected with have shown me new meanings of friendship. The special needs community is one many people don't see, not because of any fault of their own, just because it is not part of their everyday life. But once you are open to this community, it grabs your heart. The families and individuals we have met, whether in person or virtually, through Thomas' journey have left their mark on our hearts and I make an effort whenever possible to help advocate or extend some love in any way possible to any member of that community. The struggles some have to go through can leave you with heart aches, but the grace in which they do so can inspire you beyond your imagination. It's like our family grew exponentially to include people we have never met, but love as though we have known them our whole life.

I have also learned not to worry about Thomas' WHOLE life right now. In the beginning, it seemed daunting and overwhelming to think about all Thomas would need to do.  The other day we were given a printout of his upcoming appointments for the next 4 months, it was 5 pages long. Just appointments listed out with time and location....5 pages for 4 months! And on top of that, I find myself thinking down the road to school age, teenage years or even adulthood. How will all of this be for him? What will he need? What if we aren't around to help him? Will he be happy? Will his differences make him sad? Proud? What questions will he have? Will I have answers? You see where this can go...the rabbit hole of it all can swallow you quickly. So my focus is now, it has to be. What can we be doing right now that will help him, right now. Go up each stair separately and celebrate each stair individually.

Along with focusing on the little picture, I have learned to be lighter on myself with the ever hovering parent guilt. Thomas is little boy #3 in my life and over the years my time (and maybe patience) has decreased dramatically, while wrinkles and gray hairs have increased. I don't get as much one on one time with him as I am sure he needs. There is more that I could be doing with him and I am the first to remind myself of that. In those moments, I really like my iPhone (typically technology is not my friend, I am still a little foggy on this whole cloud situation) because I can look back very quickly and not only see a happy, smiling little boy who is loved by everyone, but also see how far he has come. Last year he wasn't able to even smile at us and we were in the hospital PICU monthly it seemed like. This year, he is signing all kids of words, laughing at his mommy's best jokes, rolling and playing with his brothers. All of this helps shield the guilt for a while to give me a breath and allow myself some grace. I am doing what I can and I am doing it all out of love and that is the most important thing.

In learning to be lighter with myself, I have become lighter with my perception of others. Everyone's path is hard. The struggles people go through are unique to them and just because an outsider's uninformed view of their struggle may make it seem less intense, it doesn't lessen the intensity to that person and I have learned to respect that. If someone is having a hard time, whether it be from marital problems to parenting issues to a blueberry stain on their carpet, they talk about it because it weighs heavily on them and they would like support bearing that weight. The support could be just ears to listen or it could be brainstorming a solution, but it is support nonetheless, not judgement.

Since Diagnosis day, I have changed. On that day my heart broke into what felt like a million pieces that would never be whole again, but Thomas not only put those pieces back together, he is some sort of genius that made them come together to form a bigger, more understanding and more loving aortic valve for his momma. And I will be forever thankful for that!

A year of breathing

One year ago, Thomas came home a new kiddo! He had his airway surgery on Feb 18th, 2015 and he was taken out of sedation on March 6th and then we got to come home on March 11th!! I wrote about it last year here and more here. It seems like many lifetimes ago that he had his stridor and sounded like this...

People would stop me in the grocery store and tell me to go to the hospital. When we were at the hospital for a normal appointment, nurses and doctors would come from around corners and ask if we needed them to call the emergency team. I don't miss that.

Now he sounds like this...

It's been 365 days that he can breathe and he has come to life. He never really saw us when he had his stridor. He didn't smile, he didn't interact. He just struggled to breath and that was all he could do. Now he smiles and plays and lives so effortlessly. He still has some hurdles to overtake in front of him and when they seem overwhelming, all I have to do is look back and see how far he has come and it never ceases to amaze me what he can do. 

Here's one of my favorite pictures from when he woke up from his sedation last year...

7 months old and 7 surgeries

Thomas has been thrown some more curve balls since his last surgery, but as with everything that gets put in his path, he finds his way over or around it. A family that I know from our spina bifida circles calls it inch stones, isn't that lovely? Not as huge as a milestone, but still a stone, still a beautiful formation of his own, no matter what the size. He never makes huge steps, there is never this A-HA, Facebook posting, camera catching moment, he just always takes little strides, in his Thomas way, towards what he needs. Then one day it's like he's there and we didn't even realize it. So his inch stones are important for us to notice and cherish and that has been a fun lesson to learn!

I enjoy all three boys (most of the time, especially when caffeinated), but parenting Thomas has been something special. No doctor could tell us what his outcome would be and when they did take a guess it always seemed to be worst case scenario. So we have parented him with no expectations, no pre-conceived notion of how his path would lay out in front of him and there has been an incredible joy in that. Which is so ironic because that is what I remember grieving the most when we received his diagnosis. He wouldn't be a typical kid that runs and plays and climbs. He might not walk. He might have learning difficulties. Communication may be hard. How am I going to parent in this new world that he is bringing. Well, as Thomas always does, he taught me. My world grew. My heart grew. Thomas has just taken us on this ride and since we don't know the route we have to just enjoy it as we go and the freedom that comes with that has made me a much better mom and person. One who is happy to take deep silent breaths with my baby boy!

FridayFunDay

Fridays are our Therapy days. We have back to back speech and OT(soon tone adding PT too). At first it seemed overwhelming to get Thomas up, fed and in the car to get down to Cincy for two therapies and keep him working hard and happy the whole time. But, as with most things Thomas, he makes it easy. Here's some highlights from our day. First was fun with toys and a mirror in Speech, then a small wait with some books and the chains on the window, then Occupational Therapy hide and seek and finally a well earned snooze on the drive home.

Clinic Day with Thomas - Our day in pictures!

Good parking spot = good day

Here we go....

Prof. Thomas at the urodynamic study

"Let's rock this, mom!"

We always have to see the fish in the waiting room

This isn't so bad, TV, snacks and an ultrasound of kidneys.

Starting to get restless with this whole ultrasound thing

More snacks make Thomas a happy boy

Ultrasound selfie

Happy guy to be getting back in the car and heading across the street to clinic

In the waiting room at Department of Developmental and Behavioral Pediatrics

Gained weight (slightly)!

CHEESE with the selfie stick!

Spina Bifida Coalition of Cincy always takes good care of us.
Goodie bag while we wait!

Relaxing while we see our clinic doctors

Poor guy, trying to get a quick snooze while waiting to head back
to the hospital for more testing.

CAT scan to check for shunt malfunction.
Thomas is not a huge fan

Trying to ration our snacks as we wait to be seen in the ER

Triage at the ER, he loves blood pressure cuffs

"I would like more crackers and I am done asking nicely!"

"I don't care that it's empty, you can't take it from me!"

Shunt tap to test for flow and pressure. Also Thomas is a bad ass, that's a needle in his head!

Well he did it again, no one can figure out our sweet little Thomas and
what is going on inside his brain. So here we go being admitted to the neuro floor!

FaceTiming with Johnny and, as usual, laughing at him!

"Why am I back in the ultrasound room and where are my snacks?"

Yup almost 8:00 pm...we got to the hospital at 8:00 am.

Waiting in the ER still, watching Duke lose and eating veggie sticks

It's been a 10 hour day at this point and this kid is still smiling, even though it was a LOOOOONG
day, I got to spend some great 1 on 1 time with him and it was fabulous to just BE with him.

Spiked a fever while we were waiting and just wanted to cuddle.

Fell asleep in the ER waiting for our orders. I LOOOVE
how he slept with his hand on my leg. I'm still here, kiddo!

Quiet hospital concourse after hours

"I get to have pudding...really??!!"

Watching Cars

So thankful he can sleep anywhere

A boy's gotta eat

Got the discharge orders, lets go home!

It was a crazy day. At clinic they felt some fluid on his shunt valve that no one could explain and we weren't sure it was old or new, so we were sent back to the hospital for testing and eventually admitted for observation and further study. After some tests and a few days, he was discharged and everything is fine! I enjoyed my time with him and I think we did a great job of making the best of what could have been a stressful and hectic few days. So grateful for our fabulous family and friends back home to help hold down the fort with everything!!

He's pretty cool!

Thomas is getting an MRI today of his brain and total spine. This is just a follow up from all the activity that has happened in the past two months, but it is also to keep an eye on the cystic structure in his brain since it has increased in size recently. We are hoping for an 'all-clear' prognosis and looking forward to a small break in hospital time. This kid takes these possible stressful situations and makes them so much easier on his mommy. As we were waiting for the doctor to come in, the nurse was doing vitals and he just breezes through it all. Blood pressure, he thinks it's hilarious. Temperature taking, equally funny. Listening to him breathe, almost as funny as his big brother jumping up and down. Looking for a good place for an IV poke, fascinating! He is hungry and tired, but he is so laid back and care free that I feel guilty for my grumpy pre-coffee demeanor (guilty enough that I walk, rather than aggressively jog, to get coffee once they take him back). He's just an awesome kid and that is really the only point of this post. I am nuts about him and think the world should be also!!!