Monday, October 8, 2012

The Moms

All moms are superheros, really.  Being a mom, you have a whole new respect for what your own mom has done, in raising you in a reasonable way, day after day, year after year, putting in insane amount of effort, love, ingenuity... Every minute is sometimes intense and you have to dig down to another level of patience.

But there's a group of moms that are especially amazing.  Through the past 6 years of being Lilly's mamma, we've gotten to know many other families that have kids with various needs, and I am in awe to be part of this group.  The moms of kids with Down syndrome, autism, cerebral palsy, physically delayed, intellectual disabilities, heart issues, multiple surgeries, seizure disorders, feeding issues, sleeping issues, and other disorders and disabilities.

It's not that we're better than other moms, or that our issues are necessarily harder than other moms who aren't dealing with the same things.  Because in a lot of ways, in my own situation, Lilly is so much easier than a "typically developing" child - she is pure fun, she is magic, she is easy going, she is a great companion - and her needs really aren't all that special most of the time.  But really, for us, and for those moms in this category of "special needs moms" the difficulty is in the complexity of what we deal with in our children's needs and the fact that we are the "off the beaten path" parents.  There are few guidebooks when we are dealing with various health needs, physical needs, emotional needs, mental needs. I think that is what is hardest - because there's no set "normal" way to do anything, and we are leading our kids and guiding our family's direction, so there is a lot of pressure on our shoulders to do it "right," and however we feel is most appropriate for our situation.

We love our kids as much or more - because the need it and because they just are amazing.  Our kids have incredible strength, perseverance, and they really do inspire us to keep on giving after we've exhausted all our efforts.  And not just in mental and physical energy, but we are constantly having to figure things out.  We read everything we can possibly read, talk to as many other parents who have been through what we are going through, and then we - after debating - often times throw away everything we've learned and go on our gut instinct on what is best for our own child.  As with any child, parenting is not a one size fit all package, so we really have to know our child and our family.  Even doctors and therapists can sometimes give us advice that we ignore based on our own judgment. 

And many times these moms are doing everything to provide the top support - and love - for their child, while juggling other kids, jobs/careers, and husbands with long hours.  Many of us don't live near family, or are dealing with tight household budgets - trying to find financial support to add a new therapy or something that may change our child's life.  We struggle with finding enough hours in the day. 

Recently a fellow kindergarten mom and I were talking, and I said how I was teaching Lilly so much outside school to make sure she stays up with everything - and she said "it's only kindergarten!"  And I just thought... you know, it's only kindergarten to you - your child learns typically and will learn this material no matter how it's presented in school, and whether or not you do anything outside of the classroom.  But for me - there is barely a moment where I'm not thinking of ways to help Lilly learn, grow, thrive.

And most of the time, we are not resentful, and we wouldn't change our situations or our children.  We - the moms of these kids with special, or different, needs, are in love with our children and just want to give them the amazing lives they are worthy of.  When I spend time with these moms, I am recharged by their energy.  God has entrusted us with such special gifts, and I am proud to be part of this great group of women.

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