I’ll be an old lady in my death bed and still remember him saying to Lily, touching her face and saying “continue being awesome”. It was a heart breaking goodbye said to a very special family who touched our lives in ways I could never express and those were the final moments I remember of that goodbye. “Continue being awesome.” A memory I have tucked in my heart that makes me cry at the very though of because it’s really awesome when you see someone who “gets it”.
Not too long ago I was talking after church with a friend whom we know each other through church but haven’t spoken a whole ton, but I really like her and after church while Andi Jane and Oliver played with her kids, I stood by Lily and we talked. We talked a lot. They are a very cool family willing to pack up their lives and move to Haiti. Haiti! Talk about sacrifice! Talk about making a difference in this world. So yes I wanted to talk to her, how amazing are their lives!? And while we are talking the conversation sways to Lily, as it often does, and I mention how we have a caregiver who comes in several evenings a week that helps with feeding and bathing Lily. While I talk I am thinking in my mind, am I being judged? I am supposed to be Lily’s caregiver, I am her mom. What is she thinking? We don’t know each other that well maybe I should be quiet. And that is when she says “that’s wonderful, that way you can be her mom and not just her caregiver” I agree and continue to talk, but my heart was at ease. We talked some more and when we said our goodbyes I walked away feeling a peaceful feeling. Then in typical over thinking me fashion I thought more and more on it and what she said and what a relief if was hearing coming from someone again who doesn’t necessarily “gets it” but “got it”.
There are no “normals” when dealing with a special needs child. If caring for your child in a way that each day you do things that keep them alive than there are no “normals”. And yes I understand the basics of life, making sure they don’t run in the street, not letting them around a pool, feeding them food, yes those keep your kids alive as well, but I am talking diets, medications, oxygen, surgeries, tubes, etc. Special needs. When that is your life, there is no “normal”. Sometimes you just want to fit in a world you just never feel like you fit. So you lower your expectations for some people. Not with ill intentions, just knowing when they don’t walk in your shoes, they just don’t understand the sting of the word retard. How could they, they never read it on their child’s medical record and felt like they were just stabbed in the gut. I know that if they did read those words they would have never said that word.
I am fortunate to have two other kids that laugh, fight, play, speak, feed themselves, and having them lets me in on this other world of parenting. The one where we can laugh about what they say, complain about what they do, brag about their skills and accomplishments, but having those other two will never replace the things my daughter can’t do. So it puts me at and odds. A place of wondering where do I really belong?
There are a few days a year that feel like the puzzle is all together like recently we just had one of those days, a day at the park that is for Special Kids and their families. What a breath of fresh air that is every year. Seeing Lily’s friends and their parents who walk in the same cute special shoes we walk in day after day, what a relief it is to see them. It is where I do feel I belong, I feel comfortable and welcome. But every day can’t be like that so I have to say how wonderful it feels to come across those who don't “get it” but do “get it”. People who have typical kids who run amuck and are healthy, yet somehow “get it” and when I come across those people I don’t want them to leave my side. Which is why the close friends I have are the close friends I have. It’s whom I lean towards.
I watch people, I watch them how they watch us. I dislike those who stare and love those who smile. I like those who touch and make a point to talk to Lily. I like those who will lean against her chair when standing by it. And I love those who come over and see her on the floor and lay down next to her and those not afraid to give her a big fat kiss or a nice warm back massage. Those who say I want to help you, what do you need? Those who ask specifically how she is, how her diet was going, how the medication is helping? How are her seizures?
I know not everyone is so comfortable going out of their way. I know some people aren’t so keen to touch, or some may worry I am not going to like you touching her and if you are a complete stranger I am probably not going to like you to touch her. And some don’t want to feel nosy or pushy. I don’t hate you for not asking, for not touching, I am just saying I appreciate those who do. And I get it, we are all different. I can’t expect everything from everyone. Of course I can’t. That is silly. I just want others to be aware that kids with special needs are kids. They are just as important, just as cute, and just as funny as all the other kids and deserve your time. And so do their parents. Sometimes we just want to know that even if you don’t “get it” you “get it”.
It’s hard trying to fit in worlds you just don’t feel you fit in. And maybe I don’t need to fit in everywhere. I don’t have to. I just am saying it sure feels pretty great when you are understood and feel like you do belong. And who doesn’t like that?
Lily was granted a Make A Wish some time last year. I can't tell you what we had for dinner last night so don't judge. I recently th...
Ever leave your room to take folded clothes to your daughters room, walk into that room and see that your son "fed" the guinea pig...
This was one of my most favorite jokes to tell as a kid. What did one tonsil say to the other tonsil? Hurry the Dr. is taking us out tonight...
Today is the one year anniversary of the scariest day/weeks of our lives. On this day, April 7th, last year Lily had her spinal fusion surge...
Lily suffers from CDKL5 disorder. No new news to all our friends and family, but it is June and this was our first time acknowledging June a...