Time Flies

Oh my word. It's been a year! Our angel has turned ONE!!!

What an incredible living miracle Paxton is. It's amazing to see how his life began and how much he has improved and surprised us to this day. The Pacman has had 7 major surgeries, and numerous other visits to the OR for procedures and tests. On average, he visits 1 out of 13 specialists about 4x times a month. He is the utmost example of faith, endurance, submission, tolerance, and love, and is constantly teaching US about compassion, perspective, sacrifice, and joy. Seeing him smile is the biggest reward we could ask for and at the rate he shares his smiles, we are all feeling pretty satisfied.

To celebrate his big day, we had quite the 'open house' for Paxton, 'The Champ'. We were overwhelmed at everyone who came to show their love and support, some to meet Paxton for the first time. So many have prayed for Paxton and served our family in our time of difficulty, and we felt it was important to share that day with many of those very special people. Paxton sure came to a good support group, that's for sure. From family to friends and neighbors, he has a pretty greatly stacked house.

Pax was a trooper for his little get together. Since my last post, Paxton has continued to have fever after fever, infection after infection. Mostly pnuemonias. Well, he had gotten another one the day after his birthday, two days before his party. We decided to have it anyway and Pax was just a calm little bug. He didn't show any of his great smiles for the party, so I think he did sense the crowd, which is something he is definitely not used to. But of course, he was smiling again when our house turned back into the little place he is so accustomed to. I'm so grateful to my mom, my cousin, and several special freinds who made the party look so fabulous and helped restock the food, take pictures, and basically keep things going. Jen, Emily, Misty, Heather, Laura, Terra, Jane, and Jeanette...You Rock!

(You can catch a glimpse of the day by watching this.)

In the last two weeks, our family has had quite the major milestones. Thanks to some paid nursing hours, mom and dad were able to go to Hawaii for a week!

Yep! Wow! What a rejuvenation. I STILL feel restored! Yes, there were times that were very hard to relax, and we had a tough time feeling like we should really be there anyway, but all in all we enjoyed each other's company, great food, the sun and sand and waves and amazing turtles and views, snow cones, pina coladas, sunsets, taking pictures, adventures such as zip lines, kayaking and hiking barefoot through a jungle-ish canyon to swim in hidden waterfalls, jumping off waterfalls and rope swings, body surfing, surfing, long boarding, etc. Like I said, Wow.

That was a mighty thanks to this hot couple, Grami and Pa, who provided an incredible vacation to celebrate Pa's birthday. I know, we are pretty spoiled to be such lucky beneficiaries, children! 

In truth, what a blessing. Dave and I came home very restored and ready to welcome back our life again. In fact, I was excited to come home to it. And not in a naive, grass-is-always-greener kind of way. Being away helped me to realize even more what a blessing I have of caring for my sweet family. It is really an honor to have Paxton, and Camden and Mackay, in our lives, in our family, and I just wanted to come home and be the best mom to them. Even neater is that I feel like I have done a pretty good job since then! Yeah. For being pretty hard on myself, that feels SOOO good. ...

It's amazing how sometimes you can pray and pray for things and they won't come to pass because obviously the Lord knows what's best and it's not His will at that time. But throughout this last year I have also experienced several very distinct instances where it hasn't taken all the many prayers to help something come to pass, but rather, it's been the one, truly-fervent-deep and sincere-desire prayers that have made all the difference. 

I hope it is okay that I share this, and I do so because I think it's such a good reminder to us all that our Father in Heaven is there and ready to grant us blessings to sincere and earnest desires that are good and 'expedient' to us. Upon arriving home from our trip, and after months of feeling sad and tired of still needing so many people's help and looking for a paid 'helper', I plead to the Lord with newfound resolve to "Please, Magnify Me." I can honestly say that I have wanted to do so much more on my own for months and months. It is not an easy thing or a fun position to be in to be constantly needing and asking people for help. There have been many days that I have tried to 'do things on my own', but at some point, I am maxed out, have lost my patience with boys who are bored and need attention to their young minds and bodies (as well as Pax) and don't understand why they need to wait another minute. Those days were always just so hard and although I always wanted to be all of their full-time mom, I just felt I couldn't do it well enough to save all of our sanity. Well, I really really really wanted to be done with that. They are my kids. I want to be with them 100% of the time. Getting home I was determined to not rely on others. I was determined to either find a way to make it doable and healthy for all of us, or pay someone to help me. No more favors everywhere. The good news? My heartfelt prayer was heard!! I have been amazed and so happy at all that we have done on our own the last couple of weeks. There are moments, yes, but I am still so happy to be the one and only at home with my boys, disciplining and loving them, etc. Just feeling capable to run my home and family again the way I have wanted to and not felt able to for the last year. It has almost been so good the last few weeks that I wonder why it was so hard before, and have we really reached our "new normal"? Could we be exiting the "survival stage" of the first year that everyone talks about?

I know it is better for many reasons. For one, I can literally FEEL the Lord magnifying me and helping me to do what I want to do and what I need to do but cannot do alone. He has made my burdens lighter, manageable, made me calmer and more patient, more grateful and more content. It has been wonderful! Paxton has also been in such a better place. I used to not be able to bring him downstairs without him huffing and puffing and crying. Same with the car seat. Lately (after Paxton was on the vent for 6.5 weeks for 24 hours a day to help him recover from pnuemonias and collapsed lungs) he has been transitioning to the "nose" amazingly well! We used to always have him on the trach mask, confining us to his room, and being on the vent was even worse. We were confined for 2 months to that CORNER of the room. Insanity! But we have climbed to the top of that mountain and are finally enjoying a beautiful view! Right now, after Paxton has his morning cares and things, I basically put him on the nose and head downstairs for the day with the boys. I'm also getting so used to unplugging and replugging everything several times a day, carrying his stuff downstairs to play or back upstairs for a nap, back and forth. It's just becoming so much more second nature. This has been a goal of mine for months and I am so happy we are here (more portable), at least for now. I know Paxton is likely to have setbacks again, but also he is older and stronger and able to tolerate more things. He still can't really go outside during the day. We try but it's just too bright for him. Dusk is perfect though and we try to enjoy our backyard or even a walk around the block before sunset. I can't believe I'm even saying that. Just in June I tried taking Paxton on a walk around the block and we did not make it a blip. I feel so much freedom all of a sudden!

So, we have moved mountains and milestones and are all enjoying this bit more normal life. We have also ventured out with Paxton on several quick outtings in just the last month. Paxton has loved all of them with the exception of one - a boat - for a quick ten minute test drive so we thought it would be a good trial. I really think the biggest problem was it was still too bright in the evening. But I'm not in a hurry to try that again! However, Paxton has LOVED these little trips:

to a nearby lake to see and feed the ducks...

a walk up the canyon...

his first day at church (the lovely nakedness due to an awesome blowout!)...

the boat he didn't quite like (but brothers did)...

celebrating Mackay's birthday...(who got staples in the back of his head the day before, was Captain America on his birthday, and had surgery on his teeth 3 days later! Poor KK! He was a trooper!)

the Owlz Game sponsored by Kids on the Move...

No longer does he cry when he gets in the car, and almost always as soon as we put him in his stroller and begin to walk in some beautiful outdoor place Paxton just laughs and grins from ear to ear. Yeah for ALL OF US! But especially "Yeah Paxton, Go Paxton, Everybody say Yahoo for Paxton, Yahoo for Paxton!!!"

Today, the third of our first few drives on our own, with all THREE of my chillers in the car and no other adult, I felt SO NORMAL (!!!) driving home from the doctor's office to get McDonald's ice cream cones. Who knew I could ever be so happy about driving through McDonald's with my boys!! You can only understand this if you knew how limited we have been!

So we are in a good place. Clinging to the summer evening weather and welcoming back early bedtimes, much like you all I'm sure. But for today I am completely relishing the progress and happiness of huge steps forward, especially after 3 months of steps back. Always grateful for "better days ahead."

Happy 1st Birthday to our Angel, Champ, Paxton!
"And many more..."