Monday, March 28, 2016

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!

Monday, March 14, 2016

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!

Thursday, March 10, 2016

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!