When Lydia was alive I made decisions that the medical professionals wouldn’t have.

Let me explain.

When she was 8 months old she was diagnosed with severe damage  to her lungs (called bronchiactisis). This had occurred because due to her low muscle tone she was drinking and silently aspirating (swallowing & it going into her lungs).  When this happens it can cause issues like pneumonia or this severe damage like she had.

In fact, they told me “we have never seen it this bad in a child so young.”

The next thing they told me was they wanted to put a gtube in her.  For non-medical folks this would mean feeding my daughter through a tube rather than her mouth.

I researched, I read and I soaked in every detail of this piece for myself but mostly for Lydia.  Well, this wasn’t going to happen, for so many reasons. As I sat in a care meeting with her pulmonologist, nurse case manager, special needs physician, my mom, friends and a table full of others at Children’s Hospital I firmly said…..”no.”

As eyes glared and mouths dropped – they couldn’t believe I had said no to their recommendation.  They continued to present their cases but I replied with OUR case.  I know they all thought I was nuts.  In fact, I had a recent person who sat in that room say they couldn’t believe what they heard.

But, the fact of the matter was I felt confident and secure we could find different approaches to reversing this situation. And Lydia would go on to not have to worry about transitioning and spending hours upon hours doing feeding therapy to try to learn to use her tongue and mouth.  And…Lydia loved her food.  I couldn’t take that away from her.  At this point, just newly diagnosed this was all she had that was “good.”

After the initial shock wore off her pulmonologist said “I get it, we will work with you.” I promised them that should her situation worsen I would go the gtube route.  But for now, we would try my way.

That, to me, was the start of my medical journey with Lydia.  Using my skills, education, knowledge and voice to advocate for Lydia.  And I did it 99% of the time confidently and successfully.

Another time, Lydia had been screaming for 3 months straight. First, it started out a few hours during the day or evening but it increased to almost all night and throughout the day.  She would shake her bed violently and scream keeping everyone in the house up.  I could tell she was in some sort of pain.  My caregivers were as frustrated as were we.  I took her to every specialist but we received no answers.

So, as I often did I started to put puzzle pieces together.  Lydia had been diagnosed with other problems.  So, I took the whole picture and analyzed it.  I did well with this.  Most days any ways.

And what I deducted and thought was that Lydia couldn’t handle dairy.  It was causing her pain thus causing the screaming.  I also thought it may have also caused her esophagus problem.  But, I pushed those thoughts away for a month while she continued to have issues. She went through with a planned heart surgery and again we ended up in the ER and then inpatient.

I started to get depressed.  Really depressed.  My job was to help her and I wasn’t doing my job.   And to see your child continually suffer is agonizing.

When her Dr. told me that he couldn’t scope her for 6 months due to her heart surgery and meds she was on I was at a loss.  How could we let her scream another 6 months?  She was obviously in pain.  At this point, I told him my theory, the theory of how her condition with her esophagus is mainly caused by dairy, all her pain – it had to be dairy.

Her physician, the one that came highly recommended and was acclaimed to be the best in his field in this area not only dismissed my theory but spoke to me in a condescending manner.  He went on to tell me that the tests proved she had no adversity to dairy and that I should never think about removing this from her diet myself.    (regarding the tests – it was a 3 day test for food allergies.  Esophagus problems with dairy occur over a long period of time so my thinking was that the 3 dairy allergy test wasn’t really valid with my theory)

We brought Lydia home from being inpatient and she screamed the next day for 7 hours. Tom was a wreck, yelling that he couldn’t handle this for another 6 months.  So, I picked up Grant, 18 months old at the time and headed to the grocery store.  Yes, if you guessed I was going to get her dairy free you are right.  No matter what the expert told me, my mom gut, instincts and education told me otherwise.

3 days later Lydia stopped crying. And she no longer cried in that agony until the day she died.  I was no longer incredibly sad and she was happy.  She stayed happy.  And a year later her esophagus problem went away and she came off a very heavy oral steroid.  I fired that Dr. and I was ok with it.  I hired another and asked her if she was willing to work with me as a TEAM and include my theories and suggestions. She did and we were able to help Lydia even more.

My point of these stories is to share my confidence level with my complicated child was there.  I actually thrived in this environment.  Making tough decisions, putting the medical puzzle pieces together, and helping her.  Were there times I was wrong? Sure…that’s why the medical Dr.’s were there.  They filled in the other pieces I couldn’t.  But, I was a pretty quick study.   I could do this while other parents of non-medically complex children would say “I don’t know how you do it…I wouldn’t know what to do, how did you figure that out?”

I managed it all.  Making decisions for everyone and it seemed to work.  I got in my groove of showering and putting Lydia’s puzzle pieces together while I did so.  I laid in bed listening to her breathe through the monitor thinking about her daily diary and working to help make life better for her.   I managed life, I worked full-time but signing the boys up for whatever they wanted to participate in.  And I did ok, not great, but ok at being a parent to 2 typical boys and 1 special child with many medical needs.  At least I thought I did.

Fast forward to those seizures.  Those bastard seizures. And her death.

Then raising two normal boys without juggling the medical complexities and decisions with Lydia. One might think it would be easier.

From my internal microscope I soon started to see the areas in my boys that lacked.  Of course, with my medical world now non-existent I turned my focus to them.  And my heart hurt for the time from me with them that had been stolen.   I always knew deep down there was time missing but I had no other choice when we were in it.   I saw that Devin, who usually sees everything with rose colored glasses, who had moved up to the next level in a particular sport came home discouraged, disappointed and defeated.

And then guilt not only from not saving Lydia but also about my boys came into play.  And like I did with Lydia I worked to “fix” it.  To get him help.  I wanted to help him to see his full potential and have his confidence soar and know that he can do and be better.

And that works out fine until someone comes along to tell me in essence I’m not doing any favors by getting him help, because THEY know better.  And I feel like a failure again.

Grant…I put him in kindergarten too soon. I had those that told me to and those that told me not to – saying “he’s too young.”  I couldn’t make a decision to save my life about it.  I think I consulted with every parent and teacher I knew.  Even up until the day before he started school…hell, that day even I wasn’t sure what to do.  But, I pulled the trigger and put him in.  But that was a mistake too.  I tried to fix it but you can’t change father time. He was just too young.  And now somehow I need to figure out how to tell him in the best way possible.

I messed up…again.

I know.  Psychologically this, in itself is messed up.  But it is how I feel.  My confidence that I had once had with Lydia somehow is now buried, just like she is.

At some point in our grief journey Tom and I visited a psychologist where this subject was brought up. Tom acknowledged that I was the best mother to Lydia – I went above and beyond to help her. I never screwed up.  I’m also a good mom to the boys but he also acknowledged I can’t make a decision with them now since Lydia’s been gone to save my life.  “she hems and haws about everything, worried she’ll make a mistake – she always fixes her mistakes.”

And the psychologist answered with this (after he gave Tom a disappointing look for his last comment)…

“I have no doubt you went above and beyond for Lydia.  You made tough, successful decisions for her life. And you did this well.  But you view Lydia’s death as a PERSONAL FAILURE.  YOU feel YOU failed at doing what YOU should have done to save her, when in reality it wasn’t your choice to make.  And with that your confidence is shaken with your two boys.  You are the same woman who made those tough decisions, who stood up to Dr.’s, who went to bat with politicians, media and others, the woman who faced making tough calls for her life for 7 years.  You are the same woman who did things others wouldn’t dream of – YOU are still the same mom but you have to process and work through the thoughts of failing your daughter to move forward with confidence with your boys again.”

He is totally right.  But, I’m just going to say this and say it honestly.  Death of a child can fuck you up.  Especially when it is sudden and you worked your ass off to save them.  Ok, for me this is true.

Death changes life so dramatically.  I now question everything.  It gets you to thinking (maybe too much) but you realize life is so short.  And you don’t want to screw up anymore because there is only so much time left.  And your scared for another loss or another disappointment. Petrified, in fact.

I question if I should have gotten my kids from the bus stop rather than watching them take the short walk to the house .  What if someone drives up and takes them while I’m standing in the window watching?

I question whether or not I’m feeding them ok, too much candy?  Too much sugar? Hoping that they don’t get cancer because I didn’t do enough.

I question my friendships.  My relationships.   Who is totally honest and real?

I question who I am as a person.  I internalize and analyze my failures even more than before.

I question when my son gets a huge goose egg on his head and can’t talk coherently whether or not I should take him in.  Instead, I set my alarm every hour just to make sure he’s still alive next to me.

I question when he gets the flu and his chest is wheezing – I sleep next to him just to hear his every breath and kiss him quietly on the forehead when we’ve made it to the morning.

I question who I open up to – who can I whole hardheartedly let in? I can easily walk away.  The pain of losing Lydia has numbed me beyond belief.

I question if I’m happy. TRULY happy. Am I living out my dreams?  Because life is so short to not be happy.

I question my true purpose in life now that she is gone.  What has God put me on this earth to do and make a difference with now that she is gone?

I am that scared, messed up mom now.  The type A, in control mom who messed up, failed her daughter, and is scared of doing it again.  No way can I wake up to another child dead.  No way can one of my children suffer anymore than they already have after losing their sister.  No more pain.  For any of us.

I am that mom who has lost her confidence of what to do next.  I am that mom who wants to put her kids in a bubble to stop the failure from reoccurring and death from happening ever again.

Sadly, death can do this.  It HAS done this.  I am now that mom.  And each day I’m a work in progress to shake how incredibly scared and insecure about my children and their life death has made me. I know this is not healthy. I try to tell myself it isn’t even true.  But when you go from holding your child to burying her – it changes things.

I’m hoping to someday find that mom Lydia had and have her stay. The one who was not shaken, who did not waiver, who felt confident in the decisions I made.  Until then, I’ll see small glimpses of her and hope and pray she stays for good.  Each day I am working to NOT be that mom.