Advocacy Archives - The Sweet and The Salty

Almost Two Months Post-Op: Grateful for How Things Went Differently This Time

By Jody January 6, 2016

It’s hard for us to believe that we are almost two months post-op from our son’s second open heart surgery.

Our son is doing really well and even returned to school this week after being out for two months.

(Leaving the hospital)

As for my husband and I, I think we are in shock of how different this go around was then his first surgery.

For our son’s first surgery we took him in thinking he “just” had a heart condition and five weeks, two hospitals, three surgeries (original open heart, chest re-opened for draining, and g-tube placement) a devastating diagnosis and expected prognosis later, we walked out as parents of a “severely disabled” child.

The only way I can describe that experience was traumatic.

Our son was in critical condition after his first surgery and stayed in the ICU for three weeks and then the general floor for two more weeks.

One week in he was transferred from the Children’s hospital where his surgery took place to the hospital our insurance was through.

A couple of days after being at the new hospital his chromosome test came back saying he had Miller Dieker Syndrome.

It’s such a rare diagnosis it sent all the different specialities and all the different doctors treating him into a frenzy.

One doctor would come into his room and tell us one thing and then half an hour later another doctor would come in and tell us something completely different.

Only two of the about fifteen or so doctors out of the attending physicians and residents who saw him during that hospital stay had ever treated a child with Miller Dieker Syndrome and our son was presenting completely different.

Even though he presented different they still wanted to treat the diagnosis and not his symptoms.

They wanted him on seizure meds even though he didn’t have seizures, and said he was having them and we were missing them (we refused and he wasn’t), they wanted him to have his stomach wrapped around his esophagus and said he was aspirating and that if we didn’t allow them to he would have multiple bouts of aspiration pneumonia, (we refused and he hasn’t), and they gave us such a bleak outlook saying that we thought the worst was over referring to his heart surgery but really the worst was just beginning referring to our life as his parents (we refused to give up hope and they were completely wrong).

I know I already said it but I just have no other way to describe it but traumatic.

It was really hard because we had a really adverse relationship with the people treating our child and it was such a fight and it took place while we were trying to deal with the news we had just received about our son’s life.

“Diagnosis Day” as it’s referred to in the special needs community is always hard and one you remember.

I think because our “Diagnosis Day” was drawn out over weeks in the hospital and attached to our son’s open heart surgery that this time when we learned he was already in need of another open heart surgery the reality of it hit us really hard and we were pretty anxious going into it.

We were prepping for a fight because that was all we knew of when your child goes in for open heart surgery.

I am so glad this time was so so different then the first.

And not just because our son did so much better after his surgery and because we didn’t receive any life changing diagnosis, but just the way the staff at the hospital really listened to us as parents and valued and implemented our input so there was no fight.

I honestly think the first go around would have been way less traumatic, even with our son struggling and learning of his diagnosis, had the team that time had the philosophy of the team this time.

We truly feel that our son received incredibly good care this go around and so instead of walking away this time traumatized, we are walking away from it with some healing ourselves and thanking God for the experience because even though it was hard on our son and hard to see him go through it, we actually see it as a positive and are so grateful because our son got exactly what he needed for his heart to be healthy and nothing less.

Focusing on the Negative is Exhausting; One Powerful Way to Combat it

By Jody August 14, 2015

This past year has definitely challenged me in ways I’ve never been challenged before. And honestly for a good portion of the challenges I really struggled. I reacted in ways opposite of how I had hoped or thought I would, I worried way more than I intended too, and I dwelt on the negative far longer than I needed to.

During these past twelve months we found ourselves weaving our way through a complicated school year with a team that included several key players who were inexperienced in working with children with the extent of disabilities our son has. As we navigated the complexities of egos, various personalities and politics in this school setting we also found ourselves facing the unexpected attempted suicide of a very close family member and subsequent downward spiral of our loved one into the throes of severe depression.

Both situations slammed into our family simultaneously with a force we struggled to reckon with.

We were stretched paper-thin as we attempted to advocate for our son and our loved one and we often experienced feelings of hopelessness, despair, and most of all powerlessness.

We have since had resolution on the school front with our son attending a new school this upcoming year that is incredibly experienced and special needs friendly. We are blessed to have this school as our son’s home school and are excited for what this year holds for him there.

We still find ourselves in the depths of advocacy, chaos and feelings of powerlessness that accompany helping a loved one coping with a mental illness and navigating a broken mental health care system.

On the heels of these challenges we took our son in for what was to be a routine MRI to act as a baseline for future MRIs to determine when in the next three to fours years his next open heart surgery would take place only to learn that his heart is already dilated to the point of surgical indication.

We now have an appointment scheduled with a surgeon at the end of this month and are unexpectedly facing an open heart surgery within the year.

Consequently my husband and I both landed in our doctors offices with our own set of health challenges that have been traced back to the overwhelming stress we find ourselves struggling to get a handle on.

Needless to say it has been a really challenging time for our family and one that unfortunately on many fronts we weren’t prepared for and just didn’t see coming.

With all of these challenges hitting us at once I knew I was going to drown if I didn’t find a way to cope.

Recently I was reading the book *Anchored: Finding Hope in the Unexpected by Kayla Aimee and she wrote: “I could not bring myself to give thanks for these circumstances but I could be thankful in them.”

These words were incredibly powerful and heart changing for me.

As we’ve faced the challenges we have this past year I realized I had slowly allowed the seeds of bitterness, anger, and cynicism to grow and overtake my heart. I have hated the situations we’ve found ourselves dealing with and our loved one facing.

And I will never be thankful for the actual circumstances that have taken place, but when I take a look at some of the incredible gifts we have received in the midst of these circumstances I realize that wow there is a lot to be grateful for.

*Choose Gratitude: Blessings Journal

I am so grateful the attempt at suicide was not successful, for people who have gone above and beyond to help our son, that we had the finances to hire an advocate to help us navigate the special education system, friends who have been there to listen, and for our marriage that continues to grow, deepen and strengthen as we navigate these challenges together, plus countless other smaller daily triumphs that I’d overlooked amidst the negative.

After reading those beautifully freeing words from Kayla Aimee’s book I began practicing cultivating a heart and attitude of gratefulness by every evening writing down at least one or two things that happened that day that I am grateful for.

I found that even in the most chaotic of what-the-heck-is-going-on-receiving-of-news-kind-of-days, the practice of daily writing down my gratitude has had a profound effect on my perspective and way of thinking.

There is incredible power in making yourself find something to be grateful for.

A few weeks into my new habit I noticed a complete shift in my mindset when I wanted my thoughts to go down the negative path I was used to.

I found myself disgusted by the negativity.

I realized how much energy I had been carelessly wasting by dwelling on the most negative of the negative that happened or could happen that day and how utterly exhausting negativity really is.

I am now a huge advocate of encouraging the daily habit of physically writing down and acknowledging what you are grateful for every single day, no matter how bad the day was.

If you are facing some tough circumstances this habit will not change your situation, but the change that will take place in your mindset will make all the difference in how you personally are affected and able to deal with the circumstances you are facing.

We are still deep in the trenches with some of our challenges, but the positive impact the habit of daily writing down what I am thankful for has had on my heart, mindset, and energy has been life changing in its own very profound miraculous way.

I pray for all those reading this who are struggling with the exhaustion that comes from having your mind constantly focused and filled with the negative, that you will experience the transforming benefits that come from cultivating the daily habit of practicing gratefulness.

I am with you on this journey of wanting to thrive despite the challenges you are facing and I strongly believe gratitude is a very powerful tool in making that happen.

(* Affiliate Link, Read Disclosure Policy Here)

Today, I Cried Hard. And it Felt SO Good.

By Jody May 1, 2013

When I got the call today that the continuation of Champion’s feeding therapy had been denied, I cried really hard. I cried while the messenger told me the news, I cried while I left messages for his therapists, doctor, and insurance. I cried in my car driving home, and I cried while my husband was leaving for work.

I just cried, and it felt really really good to do.

Learning about the denial for Champion’s feeding therapy (which we are appealing) was what started me on my crying spree, but it wasn’t really the root.

I was crying for what feeding therapy means to our family and what the lack of it means as well.

Champion is fed by a tube going into his stomach, called a g-tube. He got it when he was 4 mos old, after his open heart surgery.

Right now he gets 12 g tube feeds a day, every single day. He is on a blenderized diet that we blend for him every single day, rain or shine.

As soon as he wakes up he’s attached to the tube and throughout the day he receives the 12 feeds, some water feeds and some food feeds to make up the 12. He’s pretty much attached to the tube the whole entire day.

In between 7:30pm and 8:30pm he falls asleep in my arms on the couch, where I sit with him, holding him upright until he finishes the last of his feeds around midnight, and then once I’ve held him upright for about 45 minutes after the feed is done, him and I lay down in what has become our bed and go to sleep.

I am up with him several times through the night, as he wakes up in discomfort from acid reflux. Husband is in what has become his bed in what has become his room.

This is our routine day in and day out and has been for over three years. Which also means it has been over three years since I have slept in the same bed with my husband.

I cried so hard today when the feeding therapy was denied.

Champion has always been in some type of feeding therapy through our state therapy program. It wasn’t till three months ago when he started this particular feeding therapy, in an acute hospital setting with a specialized feeding therapy program that is well-known for their success at getting kids off their gtubes, that we began to see real progress and had therapists working with Champion who truly believed with us that he could become an oral eater.

Seeing him make progress, be able to swallow and enjoy food, and have therapists who truly believed in his feeding ability made the therapy a dream for me, something I looked forward to taking him to twice a week.

And it gave me hope that I would get a full night’s sleep again, that I would sleep in the bed with my husband again, and that Champion would not spend all his days and half way into the night attached to a tube.

But now, for now, in a mess of insurance confusion and bureaucracy that therapy is gone. And just for a while today with it went my hopes for what life would be like without the tube, for us and for Champion.

It felt so good today to allow myself to just cry and not care who knew I was breaking down.

It felt good to taste the salty bitter tears I had been keeping inside, thinking keeping them there was somehow preserving me and making me stronger as I fight for the best for my Champion.

It felt good to have my crying heard by people who love and care about Champion and want to help him. It felt good to hear them say, “We hear your cries and we’re going to do what we can to help get this fixed.”

Crying didn’t get appeals written or services back in place. Crying won’t change the fact that tonight I’m still holding Champion upright late into the night, or that my husband and I haven’t slept in the same bed in literally years, or that as soon as morning comes Champion will be reattached to his tube.

Crying won’t change the fact that it will take a lot of work, time, and energy that I don’t have to get the services started again.

But crying did accomplish something today. And that is that it simply made me feel good.