“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief…and unspeakable love.” ~ Washington Irving
Thank goodness for Washington Irving, at least now I don’t feel so silly for crying constantly the past 2 days! I loved this quote because you can feel the words in the deep place in your soul where when you read something it reverberates off the page back at you and says, yes, you are right, hold on to these words. I continue to be honored, buoyed and unbelievably grateful to everyone for supporting us. For the phone calls, emails, texts, Facebook messages posts and comments on my blog from people I know and now even those that I don’t, I am so moved. To be honest, this is foreign territory for me (you know you don’t communicate enough when your family tells you they are learning a lot about you from your blog -sorry about that), this sharing of feelings, showing vulnerability where I have always tried to be strong for myself and those around me, and I must say, it’s backfiring and wonderful all at the same time. You see, I have been specifically choosing not to go to therapy. I have a running joke with my friend K who, when I have had an especially stressful week, she will ask how I am and I will tell her, “well, I almost had 3 nervous breakdowns this week” and she inevitably tells me, “I keep waiting, I can’t believe you haven’t yet, maybe next week”. I then jokingly tell her, that above all else if this happens, I want to go to Promises, even if I am not an addict, sitting by the ocean in Malibu sounds incredibly appealing. Please note, I am not against therapy in any way shape or form, I love it! After my divorce (far too long after), I finally started going to therapy with Dr. J. He was amazing and I gained so much from seeing him, but this feel different. In my need to keep it all together, I see a therapist for me now, like a credit card for a shopaholic, it will start to break down the walls and it could all come crashing down (although I have to say, a little spending spree is good for the soul now and then – but that’s another topic for another day). So, I kept quiet and have been dealing and processing internally for the most part. Cue, my new blog. This overwhelming support and emotion has triggered an emotional tsunami in my heart. I cry for happy and sad things and things in between (forget about The Foundation for a Better Life Commercials, I am sobbing before the little girl even starts to ride her bike – thanks for those Phil Anschultz, I do love them). But, what has been remarkable and a huge growth experience, is that I don’t feel alone. When I got up this morning, I felt ok, not scared out of my mind, still slightly nervous and somewhat calm but not isolated and lonely. It could have been because I woke up to Q in his playpen which is positioned next to my side of the bed (he can’t sleep in the room with E, she likes to party from 2-5 in the morning) doing his dance moves swaying his head back and forth saying mama, baba – mind you the kid has a soundtrack for his life playing in his head 24/7 (more on that tomorrow on his adjusted birthday, I think I might know why) but really I think it was because of all the kind words, support, and relatable stories you have all shared. Fear is fear, pain is pain, courage is courage, and joy is joy no matter what the circumstance. The experience is extremely personal and the reasons are the road to the emotion, but once you are there it’s nice to know that someone can relate and share with you, even if it’s just to say, I don’t know what to say, but I care.
So in the spirit of my baby boy, this entry is in the form of a soundtrack because to be honest music played a huge role in this day for us. It pacified, unleashed tears and created laughter. It’s our playlist for today (note some of these songs were not actually playing it’s just my vision for what it would have looked like):
6:20 AM – “I Say a little Prayer ” ~ Dionne Warwick
Seriously, we got up and although we didn’t bounce out of bed and sing, we got up and said a little prayer as a family, that today would bring good news for baby E.
7:40 – “All by Myself” ~ Melissa Manchester
Driving in the car with E to her sleep study. I was starting to feel scared, lonely and anxious so I started to cry….hold the teary music please as I look to my left at the stop light with tears streaming down my face to see the police officer in the car next to me looking at me with a look that said, “but miss, I haven’t even pulled you over”, I immediately put on sunglasses. He gave me a sensitive, I am sorry you are crying half-smile, and just as he did I started to laugh out loud. From the back E made a huge toot and a foul smell filled the air. I was laughing out of humor and exasperation as she has a gift for making massive poops only when she is put in the car seat (see the “Excuse me Mam, you have Desitin on your face” post). Look back to the cop who now is looking at me like I am looney toons and the light turns green. (the lesson here is to not forget people can see you when you are in your car, plucking our eyebrows, crying or examining your gray hair!)
Decide to stop being scared and call my sister D. She always inspires me and makes me laugh and she did not fail today. Thanks D.
9:30 am – “To Make you Feel my Love” – Garth Brooks
E is exhausted and we are finally sedating her and attaching all the leads (wires) to her for the study. She keeps gagging because she can’t organize herself so I start singing this song to her. I have been singing this to her since she was in the hospital and now as I lay over her she starts to calm, but as I have mentioned before she has a movement disorder. So, as I gaze at her lovingly she clocks me with her left hand. It makes me laugh outloud while I reach to hold my cheek bone where she hit me. Who knew a 17 lb baby could pack such a punch?!
10:30 am – “Canon” by Pachelbel
This was literally playing as E starts to drift softly off to sleep
10:35 – “Breathe” – Anna Nalick
Remind myself that it will be as it will be and whatever that is, we will be ok.
10:45 -11:30 – “Fix You” – Coldplay
The test has started and I am glued to the monitor. I am having flashbacks of being in the NICU day after day, week after week, month after month. Watching the numbers, praying they keep stable. Minutes tick by and she is holding, holding, still holding. They keep coming in to check and record her vitals and then again to turn down the oxygen flow. My heart starts to pound, it’s the pounding you get where you can feel your blood flowing and hear your heartbeat in your ears. I am emailing KSP with constant updates of sats, respiratory rate, heartrate and CO2 levels…(seriously outside of science class in highschool, I still can’t believe I now know all of these functions so well). It escalates as I watch, watch and wait. She is holding! I talk to my Grandma Grace (she passed 6 years ago as of 6 days ago), Emma’s middle name is Grace and like my grandma she is strong and ask her to deliver her strength into her lungs (fun note, KSP’s Grandma is also named Grace and she is 93 and counting – one tough cookie!). I am holding her hands the entire time as her little body twitches constantly, even as she sleeps. And then 32 minutes into the study, she toots a giant toot and wakes up, fresh as a daisy. She is has only slept 32 minutes but she is happy as can be. While the nurse and technician leave the room to figure out how they need to proceed, I cry, sobbing is probably more accurate, but crying is so much more demure. I feel frustrated and exhausted, but mostly crushed, because our answers will have to wait for another day. We were given a moment of “what it could be” and then that moment went as fast as it came. Meanwhile, when the nurse and tech come back, E is dazzling in her happiness and again in this moment I marvel at her capacity for joy and tolerance.
12:15 – “I Won’t Let Go” – Rascal Flatts
We get in the car and I am sad and this song comes on the radio. I have never heard it before, but I am a sucker for a good Rascal Flatts song and this one is just perfect for the moment. As I listen, I realize something is different about this time. While I feel sad and disappointed we didn’t get to finish this study, I don’t feel the despair I normally feel. I expect that this is the case for two reasons: 1. E has improved. How much we don’t know, but it was better than last time. 2. We have all these amazing people out there supporting us, wishing us well and now that I am communicating, I don’t feel so alone.
We arrive home and I am exhausted and still not feeling well from yesterday. Q and E both go down for a nap and I fall asleep on E’s boppy pillow for 10 minutes and then it’s time to get ready to go to Pasadena for the Neurology appointment.
2:30 – “Tik Tok” – Ke$ha
As nanna H feeds E her bottle, I decide to look for a quote today’s blog posting. As I search and find this quote here and actually can feel the quote in my bones. It seems so poignant so I am thinking of this and pasting it onto my post page and all of sudden the song “Tik Tok” starts playing quite loudly from a dancing monkey that Q has put in his bumbo chair. The monkey is dancing back and forth in the bumbo while Q smiles a huge smile at me and starts moving his head from side to side (I am starting attempt to teach him some new dance moves as well, raise the roof is next on the list:)). Once again, I find myself laughing outloud with my sweet baby boy who now knows how to push all the “make music” buttons on his 7 musical stuffed animals and soon Monkey is joined by Scout and Violet the talking dogs (honestly, sometimes the concert going in our house is hilarious). Shortly after, I remind myself I should put on some trace of makeup, as Nanna H kindly suggest, “Shannon you are not sleeping well. I can tell by your face”. I don’t do it, but vow to put on chapstick in the car.
2:45 – “Stronger” – Sara Evans
E and I head out in the car for our drive to Pasadena. E is talking up a storm in her way and suddenly she lets out this happy shriek that tells me that even with everything going on she is happy and doing well. As she does this, this song comes on the radio and it’s true that in this moment, I feel a little bit “Stronger” for whatever the next conversation will be.
E and I arrive at her appointment on time (amazing achievement in LA) and are ushered right in (also an amazing achievement in the practice of medicine when seeing a specialist). I won’t bore you with the details, but the topline is that she has improved dramatically. We can’t rule out CP entirely but she did not see the major clinical risk factors for CP, except for some tone (tightness) in her pelvis. Her therapies and hardwork are paying off. She reassured us regarding E’s movement disorder and referred us to another specialist in the field that can do a biofeedback study for us. We also tackled a topic of her sleep and upcoming speech therapy which will be critical. In summary, the progress of her past 6 months is a good indicator of her trajectory and we should keep doing what we are doing. We will still have challenges ahead but we are making good progress.
5:00 – “Just the Way You Are” – Bruno Mars
E and I drive home and this song comes on. The kids love Bruno Mars (ok, so maybe I love Bruno Mars and they respond well to it) and E lights up when this song comes on. I realize she is telling me something. She is perfectly happy as she is and she is perfectly happy with us the way we are… we should be too. She will get better.
7:00 – “I made it through the Rain” – Barry Manilow
I have always loved this song, probably because it is a song about surviving. Today was a survival day for me, an emotional marathon that isn’t necessarily over and I still have no idea what mile marker we are at, but I have been given a second wind and in this moment, that’s exactly what I need.
I experienced a myriad of emotions today including the power of tears but more surprisingly the freedom of laughter and all of these emotions, bad and good, were made better and easier knowing that we had faith, family, friends, strength and unspeakable love on our side and although the words don’t seem like enough, thank you.