Thursday, October 27, 2016
The good stuff...
I don't want to be someone who only posts the bad. I strive, with everything I have, to find the good...and share that good. Rowan taught me that. His life verse is: "Let me live...that I may praise you." Psalm 119:175 . That does not mean that we will not praise him otherwise. To us, it simply means that Rowan wants to live...because he loves his life, he looks forward to sharing his story, he praises God no matter what happens in his life, and he wants all the glory to go to God, which he hopes will help others as well.
The past 4 months away from home, 96 days straight inside the hospital, and 11 days straight in the Pediatric ICU, have tested us...but we will not let them break us.
On a daily basis, It may seem like I post the scary or the negative more frequently...but that is just so we can gather prayers and support right away. The good, the fun, the surprising, the amazing... that happens too, but I don't always have enough time to sit down and extrapolate on those posts the way I feel they deserve to be shared. Sure, I always try to mention at least something positive, but that doesn't feel good enough. Today I am going to play some catch up, so please forgive the joint praise reports. As much as I wish each one of these stories had their own blog post (actually many other stories as well), I have to be realistic, and get out the good news when I can...even if it is a mash-up of blessings, all in one post.
This past weekend, my Mom Debbie, my sister Jennifer, my Niece Meghan, and her newborn daughter Onalie Rue all made a sudden trip to Seattle, so that they could come be by Rowan's side. I doubt it was easy for any of them to get away so quickly, and it definitely could not have been cheap to buy plane tickets last minute...but that didn't matter. They just knew they needed to get here. It was a short 3 days, only 3 people could be in his room at a time, he is on isolation so they had to gown and glove each time they entered the room, and the baby could not come back at all, so it was a lot of work. We kept shuffling around between the waiting area out in the hall and Rowan's room in ICU. There were tears, there was laughter, and then more tears. It meant the world to me that they flew to be by our sides during such a difficult time. They did not get to see any sites. None of them had ever been to Seattle. But, none of that mattered. They were here to see Rowan, and to be there for Brian and I. I am beyond grateful. And getting my baby fix out with an adorable newborn baby girl...well, that was icing on the cake!
2. Music Therapy
Music therapy has been one of Rowan's favorite things here at Seattle Children's. Actually, three of his favorite staff members of all are the PT, OT and Music therapists. After 5 days in a coma, and 5 more days in and out/up and down, today he made a major breakthrough because of two of these ladies. The music therapist came and played ukulele for him again while the OT stretched his hands and arms some. Then, they upped the ante...they broke out the light up electronic drum sticks that we had just recently purchased and donated to their program. Rowan was still not very alert during this session. He would open his eyes, but he would not talk or actively participate at first. Then we played Macklmore's "Same Love" on my phone, and the girls started hitting the drumsticks on an upside down medical tub. Finally, when they handed Rowan one of the sticks, he grabbed it and started drumming along with them to the music. It was more than music to our ears...it was music to our souls! Thank you to every PT, OT and Music Therapist out there. You bring kids music, you bring kids joy...but more than that...you bring kids back!
3. Hem/Onc (Nurses/NPs/Drs from upstairs)
Rowan and I love his BMT staff upstairs in the Cancer Care Unit so much. He loves the PICU staff as well, but he has spent the past 3 months straight of his life upstairs on the 8th floor, so you can imagine how he has bonded with them. Well, evidently, he made quite an impact on them too. Each day, individuals or groups of them have come down to visit him in PICU. I mean all of them: Doctors, Nurses, CNAs, NPs, Housekeepers, etc. One by one, or two by two, they come stand outside his ICU room and ask if they can gown up and come see him. Many have left in tears, some tears of concern, some tears of joy (it just depends on the day and how he is doing). Their support has meant so much too us. No patient (or their family) wants to feel like they are simply a number...or just "another patient". As much as we try to let them know how special they are to us, you secretly hope and pray that your child is special to them too, not just "part of the job" to them. Their presence down here has brought us many tears and lots of warm fuzzies. These folks give more than their time and talents to our children. They spend 12 (which truly means 14) hours a day, not just treating my son, but to trying to keep him alive. They see the ups, they feel the downs. They have all treated him like I feel someone would treat their own child. Who could ask for anything more?
When your child is in a coma, you immediately start reminiscing a lot. You miss their voice. You miss their laugh. You even miss their cry and their sass. You think to yourself, "what I wouldn't give if you would just...". One of the things we immediately missed about Rowan was his smile. As you all know, he smiles all the time, even in the midst of great adversity. Well, we spent 5 days upstairs with him very sick, no longer gifting us that smile. Then, once down here, we have spent another 11 days with him either comatose or near comatose...so again, no smile. Well, guess what? Tonight, one of his favorite staff members from upstairs came down to see him (they had been out for a bit and had no idea how sick he had gotten). Rowan opened his eyes (which he rarely did today), saw his dear old friend, and immediately SMILED! He hasn't smiled for anyone else to this point, but today was the day, and this familiar face was the face, that did it. We were blessed beyond measure. I didn't have time to be jealous...I was too happy to see that grin. It may have lasted 45 -60 seconds, before he closed his eyes again, but its okay. That is just all he has in the tank right now. And we will take it. Thank you sir, for bringing back my son's smile. I hope you know how big an impact you are having on these children. Not only are you in the right profession...you are following the right path for your life...you are a good person...you make a difference...both to my son, and to me. You helped Rowan rise up. Thank you!
5. Praying Hands
Rowan and I have folded our hands, laid them close to each other, touched our foreheads together, and said our prayers pretty much every night of this hospital stay. It is one of the nightly rituals that I have missed most. When you first oved to the PICU, I upheld our tradition by myself. I clasped your hands, held them to my forehead, prayed the prayers we prayed every night, added a bit myself, and many nights...let my tears drip onto your face. Tonight... finally tonight... thank you Jesus tonight, as I said our nightly prayers... you pulled your hands out from under the blankets and did this...