Mama and Dad

Obviously, my son Andrew didn't mean for this photo to conjure up all kinds of thoughts in my mind.

Woody just needed to get someplace and these were the closest boots. Thankfully for him, they matched his outfit.

But it got me thinking about shoes.

And wearing shoes that are too big.

I thought about expectations.

That others set for us.
That society sets for us.
That we set for ourselves.

Finding out that my son Benjamin has Down syndrome was hard. Open-heart surgery at five months was hard. Last winter with all the illness was hard.

But those things feel like the tip of the iceberg.

Because now, at two years old, I feel like the true challenge has begun.

It's so difficult to have a child who is 25 months old and can get around like a 15-month old, but can only understand and communicate like a nine-month old. Because he has all these physical capabilities but can't communicate.

He doesn't understand me when I ask him to be quiet because baby Thomas is asleep.

I don't understand him when he sticks his fingers in his mouth (no, he's not teething) and does this half-whine/half-cry thing.

He knows about three signs and no words. He only uses those signs ("brush teeth," "more," and "play") when we prompt him continually. He never communicates with us. And we can't communicate with him.

And the noise.

I had to order Thomas a sound machine for his room because Benjamin's noise levels throughout the day cannot be contained. If he's happy, if he's mad, if he's bored...he will be loud. Not all the time, but enough where it is just too much. And he is not at the age where I can tell him from across the room to quiet down. I have to drop what I'm doing (which is not easy or even possible at times), go to him, pick him up, comfort him, give him a pacifier, or just remove him from the room.

When we put him down for bed at night (between 7:30 and 8:00), he plays in his crib until 9:00 or 9:30.

Crying.
Laughing.
Fussing.
Banging his feet against the slats.
Running around in his crib.
It is loud and there is absolutely nothing I can do about it.
Every. Single. Night.

I can't really make sure that he expends more energy right now. I can't take him outside unless it's one-on-one because he requires that much attention. I am very rarely able to give one-on-one attention to any of my kids right now.

You know how when you have a new baby, you go through a phase where you just kind of move them from one "station" to the next?

Bouncy seat to swing to play mat to crib.
Rinse, lather, repeat.

Well, that is essentially the story of Benjamin's day.

When he wakes up at 6 a.m., which is an hour earlier than the day officially starts in our house, I don't really know what to do with him.

I can't let him just be. He doesn't know how to just be.

He loves to be mobile. He loves to run/bear crawl/walk around. But that can only happen if I am able to keep a close eye on him. But more than that, he tires of it fairly quickly. And he gets LOUD. Then what?

All day, I move him from the playpen (with toys) to the high chair to the bonus room to the crib. Over and over. He does really well playing by himself in the bonus room (with the gate up). But then he's just in there by himself all day. Talk about a guilt trip.

He is a baby.

And I am tired.

Not just physically, but emotionally and mentally as well.

The mom with a child with Down syndrome has some dang big shoes.

And I don't think they fit my feet.

I know they say everyone has their own timelines.

But I feel like I should be better with this by now.

More accepting.

More, "Oh, his milestones take a long time but they're so celebrated" kind of thing.

More "The DS makes him who he is" kind of thing.

Right now, that's all just crap to me.

I am over it.

I'll say what's been on my heart for days and days and days.

I hate Down syndrome.

I just don't get it.

I look at my sweet son, whom I love SO very much, and I wonder.

Why does he have this?

Why does this even exist?

What is it about this extra chromosome that makes it so he can't talk? Can't understand? Can't be typical?

A few months ago, my husband Matthew and I were talking about the fact that Benjamin is so delayed in certain areas. About how really and truly, it is okay. But then I started wondering--why is it okay? Why do we say that it's okay?

And Matthew and I came to the conclusion that it's okay, at least for us, because it has to be. We don't have a choice. And so we say it's okay.

I know the "right" answers of course.

That it just is what it is. We learn from it, we grow from it, we love because of it.

But lately I just don't care.

Yes, Benjamin is very sweet and cute and can make anyone smile.

But I want my son to be normal.

I want him to say "mama" when he's supposed to and to understand that that's me, darn it.

I want him to know that when he's standing in the tub in his shorts and I am trying to hold him up because he is covered in poop, that he needs to lift up his feet so I can remove his shorts.

All I wanted was for him to lift up his feet! One foot at a time. But he doesn't get it.

I hate it that I am bothered by all of this. I should be okay. I should be more loving, more accepting, more patient.

I know it's not his fault. But it is hard sometimes not to feel resentment. I feel like such a hypocrite when I think in my head: "Why don't you get it???" Because I know why. And it should be okay.

The shoes are too big. The expectations are too lofty.

I know all of this is extra hard right now because I just had a baby and my husband has been gone a lot.

But it's still my reality and it still sucks.

I receive many offers from people to help. Very well-meaning offers. And they make me smile and feel loved.

But there's really not much anyone can do right now except for, say, my mom and my husband. And they're not always there.

And they can't ultimately do what I'd like for them to do.

To make it all just be better. To take it all away.

And so I am going to go crawl into bed and have a good cry.

Right after I take Woody out of those ridiculously large shoes.

Because it's impossible to move forward when your shoes don't fit. Even if they do match your outfit.

When my son with disabilities was younger, I often felt a failure because I still grieved for him. Why did I feel sad, mad, guilty and anxious – when I adored my son and he brought me such delight?

Here are some of the reasons.

I couldn’t give him a clean slate in life. When I shared the joyous news of his arrival, I had to mention his suspected genetic condition, and worry about how people would react. I felt guilty that I had done something to cause his condition. I couldn’t fathom why this had happened to my son, to me, to my husband. I was terrorized when Ben choked on solids – leading to frantic 911 calls and ambulances – yet was told (incorrectly) they were isolated incidents. From age one to four he had severe, recurrent ear infections that couldn’t be treated with eight sets of tubes or antibiotics, and caused excruciating pain. He lost words, never to speak them again. The list of diagnoses he collected over the years felt like cruel blows: failure to thrive, uncoordinated swallow, dwarfism, submucous cleft palate, inability to speak, hearing loss that wasn’t properly diagnosed till age five – despite repeated hearing tests! – fine-motor problems that meant he would never write, early-onset arthritis and pain, bony growths that would have to be removed surgically and mental retardation. Whenever we were adjusting to one diagnosis, another was walloped on.

Physical and speech therapy were gruelling and didn’t result in the gains we had hoped. Ben was not the poster child for early intervention. If success was measured by his ability to reach rehab goals, I had never been so unsuccessful in my life.

Surgeries that were explained as simple, routine, didn’t go as planned (an epidural that didn’t ‘work,’ a testicle lost to infection, plastic surgery to reconstruct his ears that so failed that the resident who saw us post-surgery asked: ‘So you’re here about having his ears fixed?’).

Heartless professionals, like the surgeon who walked into a room full of residents being charmed by a babbling Ben and demanded angrily: “What is WRONG with his head?” Or the perky pediatric dentist who asked me in a pitiful voice, as I held my precious 18-month old son, in whom I was so proud: “Will he E-V-E-R walk?” “Is he short for his age?” “Is he mentally retarded? Oh, I guess you wouldn’t know that yet anyway!”

By the time Ben was a preschooler I felt I should be “over” my painful feelings and was petrified that I might never come to a place of acceptance. I sensed friends who hadn’t experienced disability in their children were tired of hearing me express my angst. Physicians said things like: “You need to face reality” – as if I could choose acceptance the way one chooses a shirt to wear that day.

I recently read an article by psychologist Ken Moses that helped me understand that the painful feelings I experienced served a purpose, and I now see them as a natural and healthy part of parenting a child with disabilities.

Dr. Moses explains how different aspects of grief – denial, anxiety, fear, guilt, depression and anger – allow us to cope in the early days, mobilize resources and support, and over the long-term to self-reflect, grapple with and redefine our values, priorities and beliefs, and change and grow as people.

I wanted to interview Dr. Moses, but couldn't locate him. In addition to being a psychologist, when his article was published in 1987 he had a child with disabilities and worked with groups of mothers of children with special needs.

Here are some relevant points I pulled.

In working with mothers he notes: “It became evident that these people were manifesting a grieving process…The impairment, not the child, irreversibly spoils a parents’ fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Recovering from such a loss depends on one’s ability to separate from the lost dream, and to generate new, more attainable dreams…Each feeling state, no matter how negative, serves a specific and helpful function.”

Dr. Moses says grief emotions provide the context for self-examination that can lead to positive change. There’s no recipe for the order in which we experience them, he says, and no “right” way to grieve.

He argues that “the concept of acceptance” as an end-product for parents “is totally unfounded. In almost 20 years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it.”

Here are some of the positive uses Dr. Moses sites for the different emotional states of grieving:

Denial: “Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.”

Anxiety: “To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes...Anxiety is the inner source of the need to act.

Fear: Fear is a warning that alarms the person to the seriousness of the internal changes that are demanded…The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult. Significant losses produce a profound sense of abandonment and vulnerability…Fear is the medium that encourages the struggle to reattach, to love again in the face of loss.”

Guilt: “Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child’s handicap. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child’s impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child’s impairment is punishment for a past inappropriate thought, feeling or action. Lastly, guilt can be expressed through the parent’s belief that good things happen to good people…Because parents have an impaired child, they must be bad people...How can such painful explanations of tragedy be useful?...Simply by being explanations. Guilt “explains” the unexplainable. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.”

Depression: “Depression is part of normal, necessary and growth-ful grieving. As we mature, we develop and modify our definitions of the following words: competence, capability, value and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are okay or not. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can’t use the measures of her peers, like having a daughter graduate from college…What is the worth of a father who cannot 'fix' what is broken in his impaired son? A parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopeless) and unable to believe that their lives are touched by good luck (hapless). Depression is the medium that helps parents come to new definitions of what it takes to be competent, capable, valuable and strong people, even though their child has impairments they cannot cure.”

Anger: “Parents feel anger at the harm done to their child and the shattering of their dreams…One’s internal sense of justice is severely challenged. As events occur that violate one’s sense of justice, the outrage must be expressed. Those expressions help to redefine one’s concepts of fairness and justice…and develop new beliefs...that make the world a tolerable place to live, even though terrible losses can occur.”

Dr. Moses says that expressing grief emotions deeply and fully with other parents and professionals enables parents to develop new values, priorities and beliefs that promote growth and resilience.