Born @ 27 weeks
2lbs 7oz

Sunday, April 7, 2013

M.O.R.E. ?

Is it just me or do the people with the highest degree seem to have the least sensitivity?

When Michael and I were in the hospital, waiting on BabyShaw to arrive, there was one cleaning lady, Rosa, who tidied our roomeveryday. After a week or so, she finally approached us and asked if she couldpray for our baby. From that day forward, Rosa would give us a knowing nod andI knew she was praying for Shaw. Her presence and grace warmed me.

Then, on the other end of the spectrum...

Two weeks ago, I stood in the waiting room of a very senior therapist – top three in the country, actually. I listened in horror as she said what every Preemie Mom fears most, “You could be doing MORE.”

Her exact words were, “If you want to see major improvements from therapy with your son, your child is going to need much MORE.” She was speaking, audible enough for the entire waiting room to hear, to the mother beside me (which in an of itself should never be done). Nevertheless…MORE what?

MORE therapy? Surely she realizes there is never really enough...With some of our children, we don’t know if there will ever be a magic number of visits or therapies when we will face a day without therapy. It is a mystery.... a guessing game... a wishful notion.

MORE time? Doesn’t she know, our entire lives are centered around doctor appointments, therapies, ‘homework,’ tests, milestones, research? There is never enough time to do all we hope to.

MORE money? Does she realize we are all trying to find the balance of what we can afford, the sacrifices we can make as a family, how much to spend, how much to save, which methods to try, which therapies work? There are infinite options, endless opportunities - a mother's mind reels endlessly with possibilities and there will never be enough money.

After this therapist proceeded to then compare our children by who needed more/less therapy in front of both of us, reluctantly we went our separate ways. I could hear the other Mom crying as I walked away. (I wanted to hug her – and be hugged – but because we both know the germs we can spread and how harmful they can be to our children - there was more awkwardness, but a silent appreciative understanding - only Moms like us will ever understand).

Once alone with the therapist, I couldn’t let it go. I had to communicate to her the line of sensitivity that she crossed, with the hope that she wouldn’t treat ‘us’ that way again. How can this woman who works with countless special Moms every single day be so oblivious to our needs?

I tried to explain that as the Mom of a preemie, you innately carry this guilt. Guilt that you were not able to do the most important job in this world, which is to protect your children. Guilt that your body couldn’t give your baby what it needed and ultimate sorrow that the results will shape the future our children. We are told ‘It’s not your fault.’ and ‘There is nothing you could do’ but secretly,the guilt stays buried deep inside and I am told will always be there.

Whether you are a Neurologist, neighbor, aunt, surgeon, therapist, Grandmother, best friend or cleaning lady… please show sensitivity when dealing with the Moms of these special little ones. If you imply that we could be doing MORE, know that we are all just doing the best we can. And believe me, we want the best for our children, these children we loose sleep over every single day...

And if you are unfortunate enough to be extremely educated in theory, but lack empathy and/or compassion, just wait.... our community of preemie Moms is growing in strength. We are forming a coalition and as our confidence and advocacy builds, our tolerance for ignorance and insensitivity wains.

Beeing Mighty

Beeing GREAT

Beeing Brothers


Jen Dalton said...

Good grief! How awful! It sounds to me like this therapist (full of malignant narcissism) carries her worth on how well her patients are progressing instead of marveling at what these kiddos can do already! Things that many of you preemie moms were told in the beginning were not possible. Shame on her! Congrats to you Candace for saying something that I am sure many others in the past have been too shocked to speak against!
Love to you and my nephews!

Lucia Dawkins said...

That is so well said Candace. One great thing, maybe the best so far, for me with ABM is that our children will 'get there' when they are ready. We can't spend every waking moment 'working' with them. Their brains and body's will make the connection and then it will be. That is what I at least choose sometimes. I used to think and still do at times, we have to be busy working with lubird all day long..but ya know what- love and relaxation are sometimes just what our special kids need and deserve. I'm so glad you said something to that lady! love you guys! jules and lu (oh funny- my test word below is 'agemore' uh, i'll type that but no thanks!) ha!!!