I Love, I Worry

I recently started bringing Baby to a daycare centre twice a week, and his special needs really become apparent at each visit. We only stay about an hour at a time and I stay with him because he can't be left alone just yet. The babies in his class, all 15 months old (mine is 22 months), eat bagels with cream cheese or muffins for snack while my little guy struggles just to sit in a special chair, too tired and stressed to eat after just a few minutes of sitting without support. While the others finish an arts and crafts project, mine is scared of the materials and can't tolerate them near him. It breaks my heart to see every kid running around the playground while mine is sitting alone on the cold ground without any toys, unable to move from one spot.

I start to feel envious of the other moms in the group when I see their kids picking up after themselves, dressing themselves, expressing themselves. Then I start to think of the different lives we lead these other moms and I.

The other moms don't have to think about different exercises to do throughout the day, repetitions, instructions on how to stimulate muscle groups, how to touch, manipulate, carry as to not injure. They don't have to worry about growth charts and milestones. They don't need to pay attention to the angle in which to present toys or the feeding spoon. They don't have to worry about the seemingly impossible tasks of teaching to blow (which strengthens muscles around the mouth), or suck, or drink or chew. They don't have to coordinate appointments starting from birth with a craniosacral specialist, osteopath, occupational therapist, physiotherapist, social worker, ophthalmologist, ear nose and throat specialist, audiologist, dentist, dietician, stimulation specialist, speech therapist, acupuncturist, dysphasia clinic, educator, sleep lab. They don't have to deal with the frustration of a rehab center, the very people that are supposed to help, decide to stop services bc they aren't patient enough to deal with their child's tantrums and aversions. These moms never had to deal with the pain of having their baby taken away from them after birth, put in a box for 11 days, exposed to constant beeping, bright lights, poked, prodded, gavage, tubes shoved up their baby's nose held by tape on delicate cheeks.

So when I hear the words "all kids go through that", it undermines my struggle. The minds and bodies of these other kids work with them instead of against them, and they adapt quickly and get over it. It's going to take a lot more time, energy, understanding, and patience with my kid.

When I hear the words "it could be worse", I wish I can explain what it's like to feel such deep worry. How can sitting in an ER for 3 days in a row while your baby goes through traumatic test after test only to be whisked away once again, but this time to an operating table, be any worse? How can staying by my Baby's side for 7 nights, not sleeping or showering, dealing with disruptive nurses, inconsiderate doctors telling me not to breastfeed, wires, machines, leaking spinal fluid, allergic reactions, get any worse?

When I hear the words "God never gives you more than you can handle" or "Babies choose their parents" I wish I could scream NO! I'm way too sensitive, I get overwhelmed by the information I'm given, the uncertainty, the sense that I'm never doing enough. I still cry after therapy sessions, after daycare, at the thought that I might die before my kid. I find it hard to relate to other parents. I seriously doubt that the other daycare moms, or the moms in the baby yoga classes or swimming classes I attended, want to outlive their children. I feel alone, tired and lost but it's ok, God thinks I deserve all of it, I can handle the next challenge.

My love, just like my worries, are both different than yours. They are always present, all consuming, and only parents with Special Needs Babies understand... We're special that way.