The other day I was walking back from the grocery store with my baby tied around my trunk (I finally found a “wearing” method he’ll tolerate, very profound for us, as he pretty much hates the stroller), groceries in both arms, when I saw two mom friends of mine (I should say, acquaintances) strolling down the other side of the street with their happy babies in their strollers chit chatting back and forth on their way to the park. I had seen the e-mail invite for a play date in the park earlier that day, but in addition to Max’s normal maintenance, he was sick, so I knew I couldn’t go. When I saw these friends walking down the street, the bitter, angry jealousy flowed over me. As I walked the rest of the way home I thought bitterly, “oh, wouldn’t it be nice if all I needed was my baby and a diaper bag to go anywhere…wouldn’t it be convenient if I could just feed my baby anytime and anywhere…wouldn’t it be nice if my child would be happy and content in a stroller?”
Three weeks ago my sister-in-law had her baby. I wasn’t happy. I didn’t rush to give her an emphatic “Congratulations!” The bitter, angry jealousy came over me and I remember thinking, “well of course her baby is healthy.”
I know it’s normal for parents of kids with disabilities to be a little bit jealous of other kids from time to time. It’s not like any child deserves to have a disability, and I think our jealousy is our way of sticking up for our kids. It’s a feeling like “what did my kid do to deserve this when that kid is perfectly healthy.” But although I don’t think it’s abnormal, I still wonder, “Will it ever stop?” Will I ever reach a point where I am happy for the son that I have with no comparisons to others? Don’t get me wrong. I love my son. I love everything about him. But that doesn’t mean I don’t wish that he would smile at me – or look me in the eye – or suck on his fingers – or stick them up his nose. I see one-month-old babies and get sad because I wish that Max could do the things that they do. I’ve had all these feelings for 10-months, and I don’t feel like I’m any closer to getting over them. At times I feel like the more behind Max is (the more milestones he’s missed) the more jealous I get of kids his age. Will I ever get over it and be content with my life as it is? Or will I always have moments of jealousy tainting a generally wonderful day?
From time to time, I wonder, if none of this had happened, and Max had stayed the perfectly normal healthy baby that he was in the womb, what would he be like? Would he be crawling yet? What would he laugh at, and what would make him cry? I know this is starting down the road to a dangerous comparison trap, and I don’t want my son to grow up feeling sorry for himself any more than I want to live my life feeling sorry for myself. That’s not healthy. I just seem to have a really hard time breaking out of this pattern.
Any advice? How can I break myself out of a negative thinking pattern into one of joy and gratitude?
My baby has been terribly sick all week. It’s just a cold, I guess, but it’s a really nasty one. It’s so hard to watch him cough and hack and hear all the mucus rattling around in his nose and throat while he works so hard to breathe. Last week Sunday night is when we noticed it. He needed to be on his tummy while my husband or I patted on his back so we could help break up the congestion and so gravity would help it out. I was terrified he was getting pneumonia. As I sat on the couch with him across my legs, patting his back, my mind raced. Should we take him to the hospital? I just wish I had a suction machine to clear some of that out for him. I knew he had to be as exhausted as I was, but he couldn’t breathe well enough to get to sleep.
He couldn’t keep any milk down and he’d had some diarrhea. I settled on just taking him in to the doctor, trying not to be the over-reacting mother. The doctor checked him over thoroughly; he didn’t think it was pneumonia, but did a chest x-ray just to be sure. No pneumonia. He sent us home with a nebulizer and had us give him pediatric electrolytes for 24 hours and to add milk back in slowly. Max’s health improved quickly initially. When I took him in for a follow-up appointment, I was very confident he would be over it by Monday (the doctor said to bring him in if he wasn’t). But as the week wore on, it became apparent that he was still struggling with this cold. He had problems keeping his feedings down when we had him up to his full feedings, and his junky cough wasn’t going away – he still needed the nebulizer at least three times a day.
Meanwhile, this natural mama is exhausted. Thursday night we had a substitute nurse, whom I had a lot of trouble trusting – resulting in a sleepless night. Friday night I got to bed late and Max slept poorly causing another night of poor sleep. Saturday night was another night of poor sleep for baby – leaving me completely depressed. It’s one of those days that getting out of bed is the last thing I want to do. I just want to run away and forget that I ever had a child and a husband and a happy life. You probably think I’m a terrible person now, but if I’m being honest, I have to admit that sometimes I just don’t feel like I can handle it anymore.
I hate the sight of yet another machine in my house to help keep my baby alive. I hate listening to him cough and rattle. I wish I could just cough all that junk out for him. I wish I could make it easier somehow, but I can’t – and I think that’s the hardest part.
I look at this adorable baby, tiny head, overlapping sutures and all, and I can’t help but love him. Even when I’m at my worst, I love him. But it is heartbreaking – gut wrenching – to watch him struggle so much without being able to do anything. The best medicine the US has to offer can’t help him. I guess that’s why I keep reaching out for alternative methods.
After Max’s birth, my husband and I were bombarded with stories of miraculous healing. Stories of kids who had very rough beginnings then caught up quickly to be “normal” by age two or three. Other friends and family members would tell me that they were praying for miraculous healing for Max. They were praying that he would be perfectly “normal.” Don’t get me wrong, I understand the sentiment. I appreciate these people trying to give me hope and encouragement. But my son isn’t like all those other kids – just like all those other kids weren’t like each other.
I get really frustrated when people tell me stories of miraculous healing. I think it’s because it’s just so easy for other people to tell nice stories and pray big prayers. But the fact is. Raising Max isn’t easy, it never was. People don’t know what to say or do so they tell me this story they heard that will make me feel better because they lived happily every after. And if it doesn’t end up happily ever after for me they will just sneak out of my life because they probably can’t handle all the drama. Don’t get me wrong, I’m sure if I were on the other side of the situation, I wouldn’t know what to say either. And I’m pretty sure I still wouldn’t know what to say to someone in my situation. But it is hard for me to take all the easy hopefulness around me especially when most of the people who are the most “hopeful” have no idea what taking care of Max is like. It’s all well and good for some friend of my parents to pray that Max will heal to perfectly normal, but I’m busy hoping he’ll smile at me one day. Or sit up on his own. That he won’t need a ventilator again. Being perfect isn’t important to me. There are so many other things that I hope for.
Max needs to be celebrated for what he is and for what he has accomplished. He survived a very traumatic birth. That really is miracle in and of itself. His immune system works great. His lungs, heart and other major organs are doing well. I recently listened to a talk by Amiee Mullins about disability and the many negative connotations we have with the term that supposed to be “politically correct.” I much prefer the attitude Kevin Kling shared on APM’s “On Being”. Instead of disability meaning unable and focusing on what can’t be done, he points out that the prefix dis- is associated with the underworld – the place of shadow and reflection. He says that disability doesn’t mean inability, but rather “able through the world of shadow and reflection,” and “having a foot in both worlds.”
This idea makes a lot of sense to me. I will never understand my son on a certain level. I will never fully know what he’s experiencing, because he’s experiencing life through that world that I can’t be a part of. He’s misunderstood because he’s between two worlds, not because he lacks ability. I struggle to think of him in this way. I worry about people staring at him, being disgusted by him, and making fun of him. When I focus on that its very discouraging. When I try to focus on the idea that he is between two worlds that is more encouraging to me than a child turning out perfectly normal. Again, this is very difficult, but I’m willing to work at it. I believe it’s important for him to be celebrated rather than pitied. His abilities embraced rather than changed.
I’ll love you forever,
I’ll like you for always.
As long as I’m living,
My baby you’ll be.
– Love you forever by Robert Munsch
I judged a speech contest this past weekend. Storytelling was the category. And as I heard this familiar story told yet again. It took on a new meaning for me. I know I will never see my son move into his own home and have his own children or take care of me when I’m older as the mother in this story. But as I heard the phrase, “as long as I’m living, my baby you’ll be.” yet again. I was brought back to the hospital where we awaited Max’s MRI results at four months of age.
The hospital’s neurologist came in and explained that he had cerebral atrophy. This is a shrinking of the brain also found in Alzheimer’s patients. The doctor explained that his brain may continue to shrink, or it may stay the same size. It is unlikely that it will grow much. A couple months later we met with Max’s neurologist to discuss the MRI in more detail. She stated too that his brain may grow a little, but not much. “He’ll be a baby all his life.” I know that doctors tend to give the worst case scenario so that you don’t get your hopes up. I understand that as a baby his brain is very plastic and could do a lot of healing. Even so this news was hard for me to swallow. I’ve never been a big baby person. I’m no good with them…always afraid of breaking them and such. What I always looked forward to in having children was the toddler years. The years when you can really interact with them and see their personalities develop. Now I was facing a future of raising a perpetual baby. This was not at all what I had in mind.
After Max’s birth I was consumed with feelings of inadequacy. “I can’t raise a disabled child! I’m the worst possible parent for this child.” I had no experience with disabled people. During the last month of my pregnancy my prenatal yoga instructor had reassured us with the proverb that “nature never gives you more than you can handle,” and I clung to that knowing that I couldn’t handle a child with special needs and so I wouldn’t have one. I guess nature had a different opinion on that subject. And honestly, as hard as it is, I love my baby. Do I wish that he was “normal?” Yes. Do I wonder what he would have been without the injury? All the time. But I’m his mother, I can’t help but love him. And I haven’t given up hope. Sure I have my hopeless days (most often following sleepless nights). Other days, though, I know that he’ll surprise all of his doctors. And nature was right, I can handle this – not that it’s ever easy – but I can handle it. As much as I still grieve for what’s lost – my baby who was perfect until he traversed down the birth canal – I’m amazed at the love that overflows my heart. I’m happy for the growth that the experience has born in my own life.
Max came home from the hospital August 10th. We couldn’t wait to get him into cloth diapers. I spent much of my time pumping to provide the most natural nutrition for my unnatural son. So far he was only on one medication. I had a feeling that wouldn’t last.
I was always excited about being a mother. The community I’d been introduced to through my midwife had gotten me excited about natural parenting. Babywearing, breastfeeding, cloth diapering, attachment parenting with no “crying it out.” Now here I was in a completely unnatural position. Natural went out the window as soon as my son took the ambulance to the children’s hospital. He wouldn’t have survived “naturally.” He couldn’t breastfeed because of a swallowing dysfunction and an oral aversion. His tone dysfunction (pre-cerebral palsy) made him fuss and arch his back out of every baby carrier I tried. And he cried inconsolably at night. He never cried it out and got over it, but sometimes we did have to just let him cry. Nothing we did really helped.
It got better after awhile. He would still sleep in the baby carriers, so I could take him out to the grocery store and such. And soon I found one that held him in the cradle position which kept him from arching his back – he still prefers it to the car seat and the stroller. He started sleeping better at night for about a month.
It was nothing like what I’d envisioned or wanted, but we clung to what we could to keep things natural. My mom friends constantly asked me “how can you do cloth diaper with everything else you have to do?” and “how can you keep pumping all the time?” These are the things that I can do. The parts of my parenting philosophy that I don’t have to give up.