My doula, M, recently told me a funny story that happened in the delivery room while Ayce was being resuscitated. I have no recollection of this, but it sounds like something I would do. Apparently as I lay there waiting in anxious anticipation I said to the room at large: “I wonder if it’s harder to be a mother or to be a grad student.”
My first hour of motherhood: “Hello little man!”
The other day M. phoned to check in on us and asked me if I had the answer to that question yet. I do. Without reservation I can state that grad school is much much harder than being a mother. Although completing your research can be compared to the arduous task of giving birth, it takes longer and you cannot cuddle your term papers, or rejoice in their independence.
This year I celebrated my very first Mothers’ Day. My mother was visiting us and my husband made us a delicious brunch. Most importantly, I had a whole day to appreciate the blessing I have been given in Ayce and also to reflect on the wonderful example my own mother, mother-in-law, and stepmother are to me.
I often rejoice in the fact that our family has such a great support network around us: My mother is a child development specialist, play therapist, resident care attendant, and currently works with adults with disabilities. She is very engaging with children and she taught me almost all of the silly songs I know! My mother-in-law is a physiotherapist whose specialty was neurological disorders, and she also provided respite care to people with disabilities while my husband was young. In addition to her technical expertise, she is incredibly compassionate and understanding. My stepmother has cared for me and my brother for the last 23+ years with all the love and tenderness of a biological mother, and I know she always has our backs!
This isn’t even including the “other mothers” in my life, from grandmothers, to aunts, to family friends, and even my peers who constantly amaze me with their great parenting skills.
Mother and Daughter
So yes, the benefits of motherhood make it so much less difficult than graduate school.
A little while ago I got a fun idea to make some gifts for Ayce’s grandmothers for Mothers’ Day. I figured I could introduce him to a new texture and try a new activity.
Just because he’s so cute after enjoying an avocado!
Something I do a lot of work on with Ayce during the day are activities that bring his awareness to his limbs. He does not have much purposeful movement in his arms or legs, so I like to help him learn what they are for. Sometimes I do finger play songs with him such as “The Itsy Bitsy Spider”, “Head and Shoulders”, or “Patty Cake”, or even simply clapping his hands and feet to music. Other times I use his hands to touch parts of my face and then parts of his face (“This is mama’s mouth, and this is Ayce’s mouth”, etc.).
This time, I made some quick and easy finger paints from this recipe: http://ecocrazymom.com/easy-peasy-eco-crazy-homemade-finger-paint-recipe/ . I think I overcooked them a bit, as the consistency was more like Jell-o jigglers, but I think it worked out really well. I took blobs of paint and put them directly onto our kitchen table, then I helped Ayce squish them around with his hands. He likes to make a “kneading” motion, which made for a fun pattern. I also helped him to walk around on the paint and let the paint squish through his toes. When we were both thoroughly covered with sticky paint, we went down and had a bath to wash it all off. When we came back upstairs I made prints of Ayce’s artwork by pressing sheets of plain white paper onto the table. Here are the results:
Bursts of colour!
Bright and cheerful!
This one is a bit more subdued.
Some of these are meant as gifts.
Going a bit more minimalistic.
Squooshy and vibrant.
I think this is a great activity for all kids! There is nothing more fun than making a mess, and this paint cleans up easily with hot water.
I realize that my first few posts make my life seem very different from everyone else, but be assured, we have fun, too! We’re a family that does a lot of near-home adventuring. I have a great capacity for excitement when it comes to special events, parades, and tourist attractions, so it’s easy for us to find awesome things to do without taking long flights or spending horrendous amounts of money.
Two Doctor Whos!
We met a sand person!
This past weekend we went as a family to Calgary for the Comic Expo. Ayce was an absolute doll! Everyone always comments on his eyelashes (we say that he thinks his name is Eyelashes because he hears it so much), but this time around, we got comments for other reasons. Check out our awesome family costume! Joel and I had been to a convention before, but never in costume. I’ve got to say, it is AWESOME! People kept stopping us to ask for pictures or to comment on how cute/awesome it was to see Tintin!
Captain Haddock, Tintin, Snowy, and Castafiore
Who doesn’t love a tiny Tintin?
Ayce is generally a really laid-back kid. He loves people and cuddles and as long as he is in someone’s arms he’s usually happy! Joel and I were brave and decided to venture out to non-family restaurants with the boy during our little holiday. He did amazingly well. First we had a nice early dinner at a sushi place, and when we saw how well that went, we decided to take him to our hotel restaurant for a more romantic meal. He garnered some attention from the waitstaff and our fellow diners, but only positive! We were careful to keep him calm, and handed him off to each other if he started to become fussy, all in all I don’t think anyone could report us to http://www.stfuparentsblog.com/ and that is a win in my book!
Sorry this post is a bit of a ramble. Ayce is having a rough time recovering from his recent immunizations, so he’s fussing in my lap as I type.
“I cried because I had no shoes, then I met a man who had no feet.” -Anonymous (This quote has been attributed to Gandhi, but as far as I can tell, he never said it. The best reference I can find is to a yahoo answer, of all things http://answers.yahoo.com/question/index?qid=20100511172222AAx8aYp )
This quote popped up in my newsfeed on Facebook the other day and immediately rubbed me the wrong way. Something I’ve noticed since Ayce was born is that when other moms talk to me about the struggles they face, they often try to minimalize them with statements like, “Obviously I can’t imagine what you’re going through” or “But really it’s not all bad when I think about all of the medical stuff Ayce had to deal with”. Well, guess what? These women are probably going through things that I’ve never had to deal with either! And I don’t envy them their difficulties, but I also don’t feel the need to diminish my own.
We all face our own individual challenges. We have a right to our experience of suffering. Just because someone may be suffering “more” does not make your own suffering any less. I guess my main problem with the man with no shoes is that he is not realizing the extent of his own suffering. How is it any easier to deal with your sore feet and blisters when you know someone else hasn’t got any feet? I guess you’re supposed to say “Well, at least I have feet”, but guess what? If your feet hurt for lack of shoes, there might be an argument for amputating them. In the meantime, you still have feet. And they hurt! In many ways we are so lucky with Ayce. Compared to other kids with his diagnosis, he has some amazing skills. If we were going to compare him to those other kids, we could feel pretty bad for those other people, and in turn, pretty smug about ourselves, but the truth is I still mourn over his deficits sometimes. They make my life difficult. They make Ayce’s life difficult. They suck. But they are our struggles. Not yours.
The last thing I want is for someone to feel like she cannot share the difficult parts of her parenting journeys with me because my issues are so much “more” difficult than her own. I also have a lot of joys in my life thanks to my beloved son, and I wouldn’t change him for the world.
So, my message to you is: Acknowledge your losses, suffer as needed, and then count your blessings– without comparing yourself to others. The truth of the matter is, we are all infinitely blessed!
In this day of easy access to the Internet, Special Needs parents can drive themselves crazy just a little bit faster. The day that the doctors explained Ayce’s initial diagnosis (Hypoxic Ischemic Encephalopathy, level 3) , I was on my smartphone every minute that I was not by his side in the ICU googling outcomes and trying to figure out how we were going to deal with the likely death of our beloved baby.
The second diagnosis- Cerebral Palsy- was a little bit easier for me as I had previous experience working as a nurse in a group home for people with developmental disabilities, but for my husband, this was what brought reality home. Searching web articles for a description that might show us what Ayce would be capable of in the future became a frequent pastime of ours while we sat in the NICU or as I spent endless hours attached to a breast pump (more on that later). Eventually though, a resident calmed me by telling me this: Ayce will let you know what he is capable of. As Ayce, his Papa, and I move through his early life, that has become more and more of a mantra for me. I refuse to get worked up about timing of things and instead rejoice in the little victories that Ayce is showing me: He can track brightly coloured objects with his eyes! He is attentive when presented with light! He allows us to guide his hands to different objects so he can experience textures! He gets the sweetest smile on his face when we cheer for him and make him clap hands!
My son can sit up on his own! Clap hands!
I have purged my house of books telling me “What to Expect” as far as developmental stages go, I have no charts from Public Health, and I have removed myself as much as possible from the temptation of asking the Oracle about what “comes next”.
I’ll tell you something, though; it gets mighty lonely out here without that “Community of Moms” I was expecting to find once I gave birth. I am so grateful that a health nurse in my home town has put together a little playgroup of children with various disabilities. We have recently made a new friend! A mom whose four-year-old daughter also suffered from a brain injury. Today we had a play date and I felt more connected to another mother than I ever have. It is a liberating feeling to be able to discuss physio and OT, to openly admit the developmental tasks that my son has achieved without worrying that she will look at me with pity, mentally comparing him to her child.
Today has really emphasized to me the need for community. If anyone gets what that resident meant those early days in the hospital, it is another Special Needs mom. If you have stumbled across my blog because of a bout of Googleitis, please allow me to be your first step to a cure! Get in touch with me or leave me a comment. I am happy to celebrate what your little one is capable of!
After Ayce was born he was taken immediately to a Neonatal Intensive Care Unit where he was on life support and receiving one-on-one care 24 hours a day. There we were given a crash course in what it means to be a parent to a child with special needs. The fear, the waiting, the medical terminology, the scary machines, and the joy in the little things like being able to hold our child (day five), having him breathe on his own (also day five), or seeing him open his eyes (day six). Fairly quickly we became used to asking nurses or doctors before making any decisions about Ayce’s care.
This is the first time I got to hold my baby. He is five days old. The extra hands belong to a nurse and a respiratory technician.
It took a long time to “de-institutionalize” and become his primary caregiver. It still feels odd to make decisions without consulting anyone, but I am happy to say that after four months, Ayce and I are slowly getting into a groove: If I decide I want to bathe him directly after he eats, I can! If I decide to cancel his pediatrician appointment because I don’t feel like driving, I can do that too. It’s amazing how the things that other parents take for granted are actually huge privileges in my life. I have to admit that sometimes I feel resentful of parents who can just flippantly choose formula brands without first talking to a nutritionist, or buy a high chair without consulting an occupational therapist, or go on holiday without considering the proximity to children’s hospitals, but it’s getting easier. After seven months I feel I can safely say that I am OK with How We Live Now. It’s just what I do.