Life isn’t for the faint of heart around here.
Last Friday was awful. We truly did not know where things were going.
J’s overnight recovery was miraculous. She is back to being the vibrant, cheerful, outrageous ,five-going-on-sixteen-going-on-ninety year-old that we know and love. What a relief!
Earlier today, as I was thinking about all of this this, and about what a difference a week makes, it happened again. Another twist: her new feeding tube stopped flushing.
As I gathered up the supplies to help Steve troubleshoot, my mind raced and wailed: You’ve got to be kidding me. We can’t do this again. Why now?? It’s only been a week…
We tried flushing with soda, hoping it’d break up whatever was blocking the tube. Please let it work, please let it work…No luck. This is not good….
Julianna, displaying her usual and perfect situational awareness, tried to take charge:
J: Text K, (our hospice nurse) – tell her everything! Translation: This is not amateur hour, folks.
We told J to hold on while we did one more thing. I rolled her onto her side as we prepared to try a warm water flush, and SUCCESS! It flushed, and our few moments of terror were over.
It took a lot longer for my nerves to recover, and even as I write this, I’m still in partial fight or flight. We just never know what will happen around here.
Julianna’s life hangs by a thread. I like to imagine it a brilliant, sparkling, pink gossamer thread with a core of steel, but the reality is far less glamorous.
The ugly truth is that she is dependent on machines for vital functions. Things here hang not by threads, but by tubes made of rubber and plastic. And even with the best and most vigilant care, machines and tubes fail.
It’s like that for all of us, really. Those blessed with good health may never know what it’s like to need a machine to breathe, but we are all eventually confronted with the fragility of life. The difference can come down to an extra fraction of a second in the passing lane or a micro-deletion on a gene: we are all hanging by a thread.
Knowledge like this can fill us with fear and paralyze. It can also lead to more humility and more appreciation. Sometimes it does all of this – all in the same evening.
Hold on to the sweet and the good.
This week:
Julianna bloomed:
And played hide and seek:
And tried a new look — Princess Rock Star Bunny:
And, in case clarification is needed on my “five going on sixteen going on ninety” characterization:
J: When I’m 13, I will be a teenager?
M: Yes.
J: Will I be annoying?
M: I don’t know. Will you?
J: I think I’ll be a little annoying, but not as annoying as a regular teenager.
M: Why?
J: Because, you know, I’m, like, a princess.
Julianna Yuri 
My prayers continue for J, you and your family. I’m relieved and grateful that J has rebounded and I hope and pray that the following weeks are filled with sweet and good with all the sparkle and glitz that the beautiful princess girl, Julianna, deserves. God bless!
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That was such a beautifully written post Michelle. Yes, life is very fragile and I wish more people had the ability to live in the present and enjoy every moment we can with those we love. I wish you all happiness, courage, strength, love, and many many blessings. You’re all in our thoughts and prayers.
Kristina
(The Sternthal Family ❤️ WCMA)
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Hold on tight to every precious moment.. good advice.
Julianna, I do think the princess in you will make every age sparkle.
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Michelle you are so right, none of us know what will happen next. Hang on in there you are all just amazing and Princess J is just such an inspiration to us all. Big hugs and praying that everything will settle down. Princess J I just love your new look…beautiful little girl ❤ xxx
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1. The last part – such a diva!!! I giggled. I imagine her flicking her hair while saying that, if she could 😎 also – her belief in the world of Princess is 101% real. Hehehe
2. The part about situational awareness to text K – toldcha I love it when the roles reverse & she starts mothering you in the ‘oh please seriously? not like that – do this instead’ way (in this case – no wailing, get things done by texting K who can help!)
Yup, Julianna is perfectly 5 going on 16 going on 80, & your occasional spontaneous pseudo-mom!
3. Rock Star Bunny is very pink, woohoo!
4. It’s lovely & precious that J plays hide & seek too! (I can still spy a trace of you though J! ;-))
Happy weekend & may the upcoming week bring more opportunities to blossom as you bloom where you are planted, all!
Love from SG xx
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Dear God, how frightening! Thank God you know what you are doing and don’t panic. I am sorry you have to live like this, you are brave faithful people. Thank God it worked! Thank God it worked! Thank God period!
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Beautifully written-praying for this amazing princess and her family.
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I hope that tube has been wiiiide open ever since yesterday evening…
Michelle, I’ve been wanting to get a copy of Julianna’s book — can you direct me to the best way to do that? I’ve poked around here on the blog site, even tried Amazon… What am I missing? I should’ve just asked yesterday but I get distracted sometimes!
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Hello,
Thank you once again for keeping all of us updated. It’s been two weeks of high, highs and low, lows
but once again through your knowledge, love and compassion Princess J has overcome all the hurdles
she has been faced with at the age of 5 with 6 closely approaching. I really don’t know how you do it,
but I’m so pleased that you succeed despite the unimaginable pressure and stress added to all the other
pressures of life.
Thank you also once again for all the beautiful and heart-warming photos of Princess J. They are just
beautiful.
MMM, all the best as always for Julianna, you, Steve and Alex,
God Bless,
Valentino
Saturday, May 21, 2016
2:10pm
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Michelle,
You have a style of writing, that lets us feel like we were actually there with you, as you describe the events of the past few weeks. Wow, I’m just continually amazed at what’s going on and most importantly that it miraculously (the kinks and horrible problems) always get worked out; Thank, God for that fact.
So thankful that Julianna looks wonderful and back to her usual beautiful self.
May God continue to bless you,
Lorna
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I so agree that you have a way of making us all feel a part of Julianna’s world. Michelle, your words are so precious to all of us. It is no wonder that Julianna inspires us and that she is so blessed to have you and your family as her support system. Age 5 going on 16? She is wiser and more insightful than most of us….praying for continued miracles.
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Julianna is radiant! You are all in our prayers and you are all such a blessing.
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Thank you so much for this blog entry.
Julianna, you Are a princess! You are everything sweet, beautiful, and good; and we love you very much!
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Thank you Michelle for updating us with this beautifully written post. I was very moved by it, and we pray to God that she will continue to be happy and healthy. Julianna you are in our hearts and prayers. From Pedro, Sujin, and Jessica.
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Michelle, just a quick note to tell you that you’re all in my prayers. Thinking of you and Julianna and your family. God bless you all.
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Its been a few days and I check back to see how your family is doing. I went through many parallel ‘threads’ with my medically fragile daughter in February. Sending you grace and ease, daily.
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I just wanted to say I really love this blog and I’m rooting for Julianna every step of the way! I have noticed that Julianna has exceptional verbal abilties. I’m sure you have also noticed this! To what do you attribute this? Do you think it’s due to the fact that she spends much of her time around adults? Could it be related to CMT itself somehow, with one gene mutation affecting another? I only ask because I have noticed similar verbal and social skills among children with SMA. I hope I’m not being rude with my questions. Your entire family is amazing!
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