A Simple Secret, A New Understanding: A Blind Mother’s Experience with a Premature Infant

Elizabeth Lalonde
Photo Credit: PTCB

Editor’s Note: We wish a very happy mother’s day to mothers of blind and DeafBlind children and blind and DeafBlind mothers everywhere. In honour of mother’s day, we are sharing this heartfelt piece by Elizabeth Lalonde, Executive Director of the COBD: Pacific Training Centre Division. The below was transcribed from a speech delivered by Elizabeth Lalonde, then president of the CFB, at the 2007 CFB ‘Moving Forward’ Convention.

“And here is my secret, a very simple secret – it is only with the heart that one can see. What is essential is invisible to the eye.” – Antwan Desantage Zuparee, The Little Prince. Now I will tell you a story – the story of another little prince – my son Rhys.

Instead of the usual coming into the world after nine months, Rhys was born three months early. He weighed 1lb 14 ounces.

The day of his birth began the profound journey – four months in the neonatal special care unit.

People ask us how we did it. All I can say is we did. We survived. And, more importantly, Rhys survived, the incubator, the respirator, the endless IV’s and oxygen, the steroids and the surgery. Just as other mothers and fathers do when they have a premature baby, my husband Jeff and I and our family did all we could to help our son.

Here is a poem I wrote about the experience:

I Love

(Dedicated to my son Rhys)

I love
How you entered the world tiny and red, fighting for your life.
The way you came three months early,
Perfect and fresh, cocooned in your isolet,
The incubator I was supposed to be.

I love
When I reached in the hole into the hot humidity of your house,
And touched your head, your hand, your paper-thin skin
And your cry,
The unearthly sound you made with your immature lungs,
Quiet, but loud.

I love
Your impatience,
When you pulled the tubes from your nose with your smaller-than-baby hands,
Your diaper, tinier than a newborn’s,
That rose passed your bellybutton.
And the facecloth blanket that kept you warm.

I love
How I held you,
Without rocking in the hospital rocking chair
Under my gown,
While your dad kept your breathing mask on.

The nurses who cared for you,
And the monitors that beeped and buzzed and rang,
Made me jump
And told me you were alive.

I love
The plastic pump that took milk from my breasts,
The tube that pushed my milk into you.
And every slow hard ounce you gained.

I love
The day we took you home,
When you were finally ours to care for.
And the sleep broken
By your hunger, your cries,
The exhaustion.

I love
The way you grew, became chubby and round
And weighted down by your
And the bite of your beaver teeth,
The pinch of your nails,
The tug on my head when you pulled my hair.
And the big sound of your cry that drove me
With frustration and happiness.

I wrote this poem with all the love and pain and practicality a mother could have. I wrote it as a mother who knows the depth of feeling one person can have for another and as one who knows the responsibility of one person for another. I wrote this poem as a mother. The fact I am a blind mother is irrelevant.

Generally, the nurses and doctors treated Jeff and I with respect, and we felt like part of a family outside the normal parent-baby union. As the weeks went on and Rhys grew and gained strength, responsibility shifted from less nurse care to more parental care. Jeff and I changed and bathed Rhys and gave him a bottle, and I started to breast feed.

Unfortunately, a few negative experiences occurred during this time regarding my ability as a blind parent. These incidents came as a surprise, considering the positive relationship I had gained with staff over the months in hospital. Funny how no-one questioned my ability as a parent until I started actually taking care of Rhys, and until people thought about us going home.

I was unprepared when three months into Rhys’s stay at the hospital, one of the new nurses said, “Do you have enough sight to take care of Rhys when you get home?” I sat speechless. It was late in the evening. I had been at the nursery for several hours and felt tired. For three months I had been there for my son and managed in a trying situation. Yet this woman was questioning my ability as a parent.

At first, I reacted with anger. But I knew this wouldn’t help. The nurse meant well and she just didn’t know how blind people could take care of babies. I took a breath, and explained that level of competence, not level of vision determines good parenting. And I talked about blindness skills and alternative techniques. From then on, the nurse and I grew close. We banished the white elephant in the room by dealing with the subject of blindness directly. The experience became positive, and if that nurse ever meets another blind parent, she will have the information and understanding gained from knowing me.

A similar incident occurred a couple of weeks later with another nurse. This nurse grumbled at me throughout her shift. Then I started to breastfeed Rhys, which is hard at first with a preemie. I asked my mom to help me get him latched on. I would have needed help even if I was sighted. But the nurse thought my blindness was the problem. She didn’t understand. In the end, I was one of the few mothers who managed to full time breastfeed a baby born as early as Rhys.

I felt anger. How dare she question my ability, and how dare she deprive me of the need to learn and get help just like anyone would in that situation. Was I as a blind mom supposed to nurse a premature infant perfectly right away, when all the sighted moms needed assistance and often didn’t succeed?

After calming down, I spoke with her supervisor about the incident. The next day I returned determined to be nice. The nurse who had questioned me the night before came and spoke pleasantly, and even mentioned an idea for putting a tactile marking on my breast milk bottles to help me find them in the fridge.

The last blindness-related incident occurred just before Rhys went home. My husband, myself, the hospital social worker and Rhys’s doctors met to discuss a going-home plan. I was excited. The meeting started. Suddenly all the people talked around me and over my head as if I wasn’t there. Slowly the meaning of their words took shape in my mind.

They asked if Jeff would be home with me and, if not, would someone else come to help me take care of Rhys? They said it was vital to see the colour of the baby at all times. If Rhys turned blue, it meant he was low on oxygen. They said since I was blind, I wouldn’t be able to detect this essential sign.

I was overwhelmed. Usually I come up with solutions, but nothing came to me. I left the meeting demoralized. What kind of a mother was I if I couldn’t be left alone with my own baby – if I had to get a babysitter to help me care for my child? Because my husband was sighted, did that mean he was the significant parent, and I a lesser parent?

Something was wrong, but I needed time to think. My son meant everything to me, far more than my pride. Was it false pride that made me question what they said, or was there a solution that would allow me to maintain my independence as a parent?

I called two friends, one a nurse, the other another blind mom. Both said I was capable of taking care of Rhys on my own even with the concern about his breathing, and I could learn other, non-visual ways to determine his oxygen level. Who knew a baby better than it’s own mother? And if the hospital staff were that concerned about Rhys’s breathing, should he be leaving the hospital at all? Finally, they pointed out something obvious: do sighted parents watch their premature infants 24 hours a day, without taking their eyes off them, without leaving the room, just staring at them continuously? Certainly not. My pride wasn’t the problem. Their misunderstanding about blindness was.

The next day I told the social worker about my concerns. She said they hadn’t meant to offend me, and she called another meeting for that day. At this meeting people treated me like a responsible mother. The doctors came up with solutions and showed me how to touch Rhys’s chest to check for in drawing of breath, feel his body for clamminess and listen to the pace of his breathing. What a change from the day before – a change in attitude, a change in understanding.

Finally, we took Rhys home. A glorious day. He was born in April and now it was August. The birds sang and the sun shone, and Rhys was seven pounds and breathing on his own — one journey ended, another about to begin.

Rhys is three years old now, and doing well. Jeff and I are expecting another baby in July. Hopefully this one will go to full term.

Techniques Used by Blind Mothers

The techniques I use as a blind mother:

  • a bell on Rhys’s shoe;
  • a harness when we go for walks;
  • following him around at the park, rather than watching from a distance

These alternative strategies help me do my job as a parent. But these techniques don’t change my ability as a mother. Good blind parents, like good sighted parents take the journey of parenthood and do the best they can on the way.

Parenthood is not about blindness or sightedness, it’s about love, strength, perseverance. It’s about sleepless nights, heart burn and feeling like no matter how much you do, it’s never enough. And, it’s about competence, wisdom and a lot of learning as you go.

Continue the Journey

Editor’s Note: Read more about blind parents.