bumps in the road and in the neck

It is pretty hard to scare me with medical stuff these days.  We’ve pretty much stared down some of the worst possibilities that life has to offer.  But Sunday, I touched a bruise on Evie’s neck that had been lingering for longer than your average bruise.  I discovered a pea-sized lump underneath.

Fear took hold of my entire being. Why does this stuff seem to always come to light on the weekends?

I was on the phone, leaving a message, well before the doctor’s office even opened on Monday morning.  Luckily, we were able to get in at 1:00 on Monday afternoon.

Evie’s pediatrician poked the bump for a minute and promptly said, “It is not cancer.  It is not anything serious.”  Relief washed over me as he answered the questions I was too afraid to think, let alone ask out loud. He went on to examine it further and said it was some type of cyst.  If it gets infected, it will have to come off but otherwise, it is just there.

Dr. Parker is something of a hero to me.  As are many of the people that we have the pleasure of working with on Evie’s “case.”  Dr. Parker is always calm, reassuring, and there.  When I call worried, he sees us.  He is not an alarmist which I really appreciate.  And I leave his office feeling like a good mother rather than one that overreacts…which I am sure I do at times.

In the special needs community, I hear a lot of complaints about services.  Complaints about service providers. Complaints about the system to which we, as parents to kids with special needs, are slaves.  I do my share of complaining about insurance and the fact that human services is underfunded.

But I am so grateful for the wonderful people that support our family.  And there are many.  MANY.

You know those trust games that you play as a kid at camp or an adult on a team building in-service?  The ones where you stand up high, turn around, and fall backwards into the net of human arms that is formed below you?  I feel like we do that everyday.  And I stand backwards with Evie and we fall together.  The people that support our family catch us.

While I am, ultimately, responsible for Evelyn and everything that happens with her and to her, these people catch us.  And they’ve never, not once, dropped us.  We’ve fallen backwards, from our perch, into their capable arms for years.

We started receiving services when Evie was six months old from the Vermont Family Network.  We worked with that organization until Evelyn was three.  These people came into our home weekly to work with Evelyn.  For two and a half years, they shared exceptional expertise, they supported us, and rode with us while we took a bumpy road through terrible possibilities, diagnoses, set backs, and triumphs.

Evie’s case coordinator from Vermont Family Network was phenomenal.  She taught me to advocate for my child and to trust my instincts.  Her developmental educator was a ray of sunshine with the ability to gently push me where I needed to go when I hesitated.  Her SLP was incredibly skilled with a sense of humor that just made our visits fun.  Her PT was so knowledgable and has the sweetest temperament.  Evie’s medical social worker, who is still on her case, is unbelievably responsive and straight-forward.  All of them are compassionate to a fault.  Deserving of my implicit trust.  And great big heroines.  As long as I live, I will be grateful to them.

When Evie transitioned into school, I was so nervous.  Transitions from those that you trust to those that you don’t know are hard.  But we were again blessed to know and learn from two of the most incredible women I have ever met.  Not only were her developmental educator and slp skilled, but they were committed to giving Evie service in a way that goes so far beyond the call of duty.  It was truly humbling to see how dedicated they were to my child.

After two years, we had another transition into a new team.  It seems that just when you’re comfortable, you are nudged into a new situation.  We’ve experienced our bumps and hiccups which is to be expected.  This year, Evie has a para educator that has been able to connect with Evie so solidly.  Her new team has a unique set of skills and we are seeing some real gains.  The women, and man, that work with Evie are fabulous.  And while we are still getting to know them, we know that they have Evie’s very best interests at heart.

This year, we have also formed a relationship with Howard Center.  We have a case coordinator who is just wonderful.  She is so calm and she listens.  Really listens.  I cannot tell you how valuable it is to have someone that seems to hear everything.  I am trying to follow her example of talking less and listening more.  But I mostly fail.

The rules of the game in this little world are ever changing.  Keeping up with it all is nearly impossible.  Actually it is impossible.  We have no choice but to trust.  Often blindly.  Trust games are fun.  But we aren’t playing games.  This is Evie’s life–all of our lives.  I cannot imagine not having these people to lean on and to cushion our rear ends when we hit the inevitable bump in the road…or the neck.  Being a parent to Evie has opened so many doors for us.  We have the privilege to know some of the most exceptional and kind people on earth–one more reason to be grateful to be a parent to such a unique child.



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