A lesson in true love…

When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly” ~ Patrick Overton

Today is one of the days that is the worst for me, “the day before”.  The day before we go to the pulmonologist to have E’s lungs assessed and the day before we go to the Neurologist for E’s follow-up appointment.  Fear for me lies in the anticipation, what the doctors will say and what they won’t be able to answer.  To mentally gear up for the pulmonogist my brain conducts an emotional obstacle course that goes something like:

– Start with hope that we will be able to start to wean her off the oxygen and she can start to live like somewhat of a normal baby and our family can know what it would be like to have some freedom, and most importantly, that we will be able to kiss her cheeks.  For the last 17 months, we have kissed plastic and tubing and not her sweet skin (except for 1-2 times a month when we change her nasal canula (the oxygen tube with prongs that hospital patients wear on their face to deliver oxygen) which only lasts for minutes at a time).  I always tell Q his cheeks are like marshmallow clouds…I want to tell E this too and follow it with a big kiss.

– Then I  follow that with reason and rationale that it’s very likely she won’t be there yet and we will have to stay on the oxygen as her respiratory patterns still seem to be irregular.

– Make comparisons to so many families that have such greater troubles than us, which we will be reminded of as soon as we walk into Children’s Hospital Los Angeles (For those that have never been into one of the Children’s Hospitals, it is a heart-wrenching experience.  You see the children on rolling gurneys with scars on their heads still healing from a recent surgery and other children with traechs in their throats and you want to crumple in a ball and cry knowing what these parents are going through the greatest challenge of their lives) and know that we should feel and remember how lucky and grateful we should be.

– Get frustrated that I have such a hard time just letting myself feel my feelings and being ok with allowing myself to feel that way.  Be preliminarily frustrated that if she isn’t ready then why? How much longer? Is there anything else we can do?

– Proceed to sadness and anxiousness that this will be the case and we will stay status quo.

– Tell myself it’s going to be ok no matter what happens we will figure it out and we are just lucky she is home with us and not in the hospital.

And after all these thoughts, my mind goes quiet and my heart takes over. I get an overwhelming sense of sadness and fear, not so much out of concern but over the bigger picture surrounding her future which will be  discussed further in her following appointment, her Neurology appointment.  It is here that I start to feel lonely and begin to isolate.   It’s almost like I can see myself in a movie walking backward as I slowly try to remove myself from communications about this very painful topic only to have a frightening internal dialogue but not able to express it out loud for fear that it may come true.  For those that went through postpartum depression, as I  did as part of all the things we were going through, it feels like watching yourself from the outside and not being able to truly communicate how you are feeling.  BUT, all of these things cannot trump my greater instincts which is to be a survivor and above all else you need to make it work and move forward. This is what drives us and what I truly believe is the reason our babies are here today, they are survivors.

So, as  I have said before, our instincts have always told us that something is off and although E is improving she still moves all the time, has trouble organizing herself and will only make eye contact for a few seconds at a time.  We know that these symptoms mean that she has some sort of sensory processing disorder but to what degree that will manifest itself in her future is unclear.   What’s heartbreaking and wonderful at the same time is that she is such happy baby, she doesn’t know any better and she tries so hard. Between therapy 6 times per week and supplementary sessions with KSP and me she is exceptionally tolerant.  As her parents, we always walk the line of not pushing her so hard that we become her therapists and forget to be her parents who just hold her, play with her and love her. Through all this it’s Q who keeps us all grounded. He sees E as his very special sister. Next to one another, he goes out of his way to hand her toys and waits patiently while she reaches out unsteadily to try to grab them.  He pets her hair gently (with an occasional tug, he is only 17 months so he can’t be totally perfect:)) and makes a high pitched sigh which is his way of talking to her.  In his presence, our always moving precious daughter calms and quiets herself.  She stops moving and allows him to just be near her.

Tomorrow when we go to see Dr. Michelle, the subject of Cerebral Palsy will inevitably come up as this is a follow-up from an appointment last September where we sat casually as she evaluated E and then dropped the CP bomb.  It might as well have been something like, “so what are we going to have for dinner tonight?” “Oh, and what do you know about Cerebral Palsy?”. She was not being insensitive, it was just sort of the next thing we needed to discuss, and although it was time, you are never ready as a parent to hear those words about your child.  Her assessment then was E is showing red flags for the brain injury, but they don’t like to make any diagnosis until they can actually do an MRI on the brain to see what damage exists and where.  I suspect tomorrow she will be looking for these same or new red flags and to see what progress E has made.  I will be going to the appointment alone as KSP had to take a last minute business trip and we both agreed it was better to keep the appointment, which is fine because I will be processing internally (I am not so fun when I am doing this, it usually involves, some tears, silence and caramel apple pops) looking perfectly composed and together on the outside while trying to keep myself from falling apart on the inside.

Either way, tomorrow will be here in a matter of hours and it will start like any other day.  But as, E and I prepare to walk out the door in the very early hours, I will make sure to look at Q and remember to see her as he sees her, not as a baby with potential CP or any other diagnosis but as his very special baby sister (amazing how 2 minutes that seem like such a big gap in this scenario, I wish it was like that everytime I celebrated a birthday – turning 37, but actually I am 29!) who no matter what happens he will wait patiently for her to do whatever it is she needs to do, grab a toy, look at him, sit up, eat her a bottle, and be tied her into her chair for bed.   I will be forever grateful to our baby boy for this valuable lesson for it is the epitome of true love.

And for us, as her parents,  no matter what the doctors say about E’s prognosis, and just as it has happened all along this journey of life, I do know that as we somewhat blindly take the next step for our family there will either be something solid to stand on, or we will be taught to fly.

3 thoughts on “A lesson in true love…

  1. I just read a post about courage and anxiety. You seem to have an amazing amount of courage. : ) Raising children is difficult. Raising twins can be down right frightening. Raising a child with medical issues that is a twin takes so much more. Keep posting. : )

    1. Thanks so much for taking the time to read my blog. Courage is word that is so admirable. I would be honored to be considered courageous. I love my babies more than I can ever put into words so I suppose I see all that we do as just what we are supposed to and meant to do. It does not come without it’s challenges but in most moments you get it all back from one look or laugh 100 fold. I hope you will keep reading as it’s post like this that do help me keep perspective and hopefully will give courage to others who are challenged.

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