Being and staying strong while feeling powerless…hard but possible.


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Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”  ~Unkwown

Today, I needed to be like this oak tree.  Strong, stable, wise, and grounded.  Instead I feel more like a weeping willow.

In coming off a wonderful Mother’s Day where I could not have felt more blessed, and right back into the fire of conjuring up all my will and strength as I walked Q into the hospital for his VCUG this morning, it has been a trying morning to say the least.

For those that do not know what a VCUG is, I hope that you will not have to experience one, but to clarify why this procedure is so upsetting for me, and let’s be honest more for Q as it’s his parts that are fiddled with, you must know what I am talking about.  The proper name for a VCUG is a Voiding Cystourethrogram.  Raise your hand if you have any idea what I am talking about this point…if you do, call me we can talk about how much it sucks.  Now, if you are male and want to close your eyes and count to 5 and pick the story back up in a paragraph or so, now is the time as I am about to talk about a catheters.

A VCUG is an xray procedure where they catheterize you and then pump liquid up through your urethra up to your bladder and then watch to see if there is any reflux (fluid going back up the urethra to the kidneys instead of the direction it is supposed to go, which is out).  The process of getting a catheter inserted is quite painful and although this is the 4th VCUG that Q has had in his life, he is older now and he knows what’s going on.  Thus, the screaming and crying is not only louder it’s more painful, accusatory, heartbreaking and intense.  So, as I leaned over my baby this morning to hold down his arms and legs and kiss his head 1,000 times to try and take some of the pain away, it took every once of will and strength not to sob right along with him.  Instead, I felt powerless, powerless to take his pain away, powerless to help him and make him understand it won’t last forever, powerless to comfort in a way that would make it better.  Powerless.  All I could do, was cover his face with kisses as he screamed and whisper, I am sorry, I am sorry, I am so so so sorry, Mommy is sorry.

The fact that this test is not a surprise because it is another step on a journey that we have known about since he was in uterero, in him having what we thought to be a non-functioning left kidney, did not make today’s procedure even remotely easier. And even though, when he was born 12 weeks early, we learned that perhaps his kidney did work but there was duplication of his urethra and his anatomy was not correctly structured, there has still been a great deal of confusion around the matter which has resulted in tests, procedures and speculation.  What we do know is that he has had Grade 3 reflux in both kidneys since birth, and so on January 25th, when he went in for the draining of a fluid filled cyst in his bladder called a ureterocele (also not fun since they actually put the Q under anesthesia), the Doctor gave Q a deflux injection with the hope of eliminating the reflux and today was the day to see if it worked.

After several xray pictures, and a lot of crying despite rousing renditions of “Old McDonald”, “If you are happy and you know it” (I quickly deemed this inappropriate as he was so clearly unhappy) and eventually Ke$ha’s “Tik Tok” as sung by his beloved dancing monkey, the Doctor informed me the reflux is still occurring on the left side.  For Q this means a few things: 1.  Continued prophylactic antibiotics to prevent infection that the reflux can cause, 2. Follow-up appointments with pediatric urology and nephrology and sadly, 3. Another VCUG somewhere down the road, probably 6 -12 months.

Now, in the grand scheme of things, trust me when I tell you, I know things can be so much worse for I have a dear friend who I met in the NICU whose baby goes through a surgery about as often as we go to the Doctor and so her reserves or strength are awe–inspiring, but for me today, it was hard. I had to use the “at least we aren’t in the NICU” reality check for myself, and  as a default mechanism, that’s when I know it’s a rough one.  For Q, it was exhausting.  While we waited for him to pee pee everything out of his bladder, which you must do before they let you go home, he drifted in an out of sleep, the kind of sleep you surrender to after your mid and body are so taxed you just go to sleep to shut out the pain.  As I gently stroked his hair, I could only say I am sorry, I am sorry, so so sorry, it will all be over soon.

Now that we are home, he is fine and back in good spirits but I think my spirit may take a bit more time to recover today.  However, like the oak tree, I will whether each storm as it comes and try to stay grounded in wisdom, strength and hope and be grateful that I can serve as the strength for my children and family when they are hurting or happy because I choose to do so and not fall apart as I have wanted to do so many times before.  Today, I was reminded that I am strong and I can dig deep and be present. I can be cognizant in times when I feel powerless to remind myself, that this too shall pass.  It is a lesson I don’t enjoy being reminded of in the moment, but now sitting here typing this post, I am grateful to know that we are strong, as a family, as individuals and for one another.

I know from your emails and notes to me that while our circumstances are different, many of you sometimes feel this same lack of strength, but know that you are rooted deep and you have the strength to keep going and that even when you feel powerless, this too shall pass and you come out on the other side reminded of just how very strong you are.   Stay strong and let today be your new favorite day because you know just how strong you are and that will serve you well today and in whatever the future may hold.

A

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About Shannon Pruitt from 'Mynewfavoriteday'

Welcome to 'mynewfavoriteday. This space is about gratitude and connecting through being open, vulnerable and real. I hope you will enjoy my take on motivation, inspiration and advocacy and will take the opportunity to tell me of your own thoughts and stories. Why I started 'mynewfavoriteday.' I am a childhood surviving, divorced, now happily married, IVF (and now natural pregnancy) success story, working mother of 2 amazing babies who were born 12 weeks premature. As life often seems to surprise you when you least expect it, we added another sweet baby girl M to our family in July of 2013. While our angel minis, Q and E are now 7 years old, our son, Q, has thrived while our daughter, E, has had a much more difficult journey. She is considered special needs and in September of 2012 was diagnosed with a rare genetic disorder called Angelman Syndrome. And so, as she has grown, so do we as individuals and as family. How to help her, how to celebrate our differences while allowing ourselves to cope with the challenges that we never knew to expect. Thus, while much of this blog is based on our experiences (good and not-so-good), it is also based on how we must not let ourselves become victims of our circumstances but rather advocate in our own lives. A little bit about me and who I am. In my professional life I am a marketer in the Entertainment Industry; however, ‘mynewfavoriteday,’ was not born of entertainment or marketing but rather as a pathway to help myself and others as we try to define who we are as parents, family members, spouses, friends, colleagues and people. I believe in never judging a book by its cover. Every cover is different, and no matter what your cover looks like, you never know how someone's book is written. Like mine. From the outside, you might never know what truly makes me who I am or what I believe. This blog explores the pages on the inside of my book. My vulnerabilities, fears, happiness, and all my triggers through the lens of being grateful for all the amazing blessings I know I have received but sometimes forget in the challenges of daily life. Thanks again for dropping by. I hope you will come back, subscribe, comment, share, and/or just hang out and be inspired or motivated to make each day for yourself or someone else 'anewfavoriteday.' By being here, you have certainly helped to make it mine. xo, Shannon

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6 Comments on “Being and staying strong while feeling powerless…hard but possible.”

  1. Lisa Says:

    Thinking of you and Q.

    Hang in there

    Reply

  2. Y'vonne Says:

    Shannon you should cry and cry hard today. It will make you feel better. I’ve spent many hours crying and holding my first baby Aidan crying. Somehow with Roan I’m much stronger and it’s different challenges. The cry makes you feel so much better and you deserve it.

    Remember what I told you the other day. Once day you will look at Q and E and they will be emerging on 8 years old and you will not remember all the procedures, medicines, treatments, surgeries..etc they went through. They will be happy children sassing you back doing some kind of funny dance in your kitchen as you make dinner brightening up your entire world. You’ll try to kiss them and they will melt in your arms or run away from you because they are either to old now or love every bit of that hug and kiss you give them. This day will be such a distant memory and you will actually not even believe they are the same children.
    (((hugs))) from one momma to another.

    Reply

  3. Faith Says:

    There’s nothing that has the same heartrending quality of having to allow someone to cause your child pain “for their own good.” And the look of trust betrayed that they give you while the event is happening is all too familiar here.

    I agree, take time to cry yourself. It’ll make picking yourself up for the next round easier. I hope things turn out better than expected so that you all don’t have to go through this many more times.

    Faith

    Reply

  4. Nis Says:

    Oh, Shan…my heart just broke a little thinking of you standing over Q and reminding him how much you love him. My little sweet pea had a fever and earache on Saturday night and even while brushing her hair back from her sweaty brow my heart was aching that I couldn’t make that small thing better for her. To shoulder the pain of our children while we shelter our own hearts during the moment in order to “hold it together” is one of the common bonds of parenting regardless of the intensity of the situation. I am just in awe of you all! You DO deserve a good cry tonight…and a DAMN good glass of wine, as well. xoxo

    Reply

Trackbacks/Pingbacks

  1. Life is not a relative experience. | mynewfavoriteday - May 16, 2012

    […] to be his monkey, the monkey on his back.  Each time he gets the test, he gets catheterized.  The last time as I wrote about this experience, I felt as if I had failed him as I held him down and he looked at me accusingly me as he wailed in […]

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