Welcome to Holland….Don’t get Comfortable.

I’m just having a hard time.  Someone reminded me of the essay entitled “Welcome To Holland” (http://www.child-autism-parent-cafe.com/welcome-to-holland.html)  I see it mostly in reference to raising a child with Autism, but I’m not sure that was the authors intent…it may have been.  It really fits many situations when you are raising a child who has “different than typical” needs.   To paraphrase it, she says that having a child with special needs is like planning a trip to Italy(having a typical child), but being brought to Holland (having a child with special needs), and you don’t get to go to Italy.

When you find out you are having a baby, all sorts of plans begin in your head.  They are plans that don’t involve a daily medication routine that happens at BEST 3 times a day, more on bad days.  They are not plans that include going to the doctor every 2 to 3 months, sometimes more often.  Heck, they don’t involve even HAVING more than one doctor…the pediatrician.   Then all of a sudden, a baby comes along, and sometimes immediately, sometimes after a while, you realize that life isn’t what you were planning.

Now, rather than just making sure you have extra diapers and wipes, you also have to make sure that you have medication with you, in case your child starts having trouble breathing.  An impromptu trip out to dinner brings on guilt, because you forgot to bring along the medication that your child needs to take with meals, so that she doesn’t get sick.  Your child has a “team” not just one doctor, but 5, and you are nearly on a first name basis with them.

It’s HARD to embrace that THIS is your life.  It’s not the life you expected.  No one is saying you don’t LOVE your life, and your kids.  You know what, though…It’s OK to say that you aren’t loving your life at the moment.  Sometimes, the weight on your shoulders gets really, really heavy, and it’s OK to say that it’s hard.  It’s OK to cry, it’s OK to complain.  Most of all, it’s OK to do something that is JUST for you.

Right now, Abby’s having some “extra” issues.  It’s not terrible, it SHOULD be easily dealt with…but I was in the doctor’s office feeling very blue, because yet again…we’ve had to meet a NEW doctor, because Abby’s body, no matter what we do, add, eat, isn’t doing what it’s supposed to, and now, we have a secondary issue to deal with.   So, we have to keep her on Miralax, indefinitely, so that she doesn’t reopen fissures every time she goes.  It’s not terrible, it’s not life threatening, it’s just SOMETHING ELSE.  I’m tired of something else.

Pretty much daily, reminders of how close to July we are.  It’s time to finish paying for Abby’s camp, which is the same week that Mariella and I are going to the hospital.  I got a Federal Jury summons that begins July 5. (I asked for and received a deferral-and possibly an exemption) I was trying to make plans with a friend, and I realized that July is really only a month and a half away.  Whenever I think about it, it brings me a ton of stress.

To put it in the context of the essay…I feel like just when I’ve gotten used to being in Holland, someone makes me pack, and I get moved somewhere else.  When I get used to where I’ve gone, I’m made to move again.  When am I going to be allowed to just be where I am, to get comfortable?

4 Responses to “Welcome to Holland….Don’t get Comfortable.”

  1. 1 sarahsasthmablog May 14, 2011 at 12:30 pm


    Thinking of you. *hug*

  2. 3 Elisheva May 15, 2011 at 10:19 am

    Hugs too. If it’s worth anything, I think you’re doing a great job dealing with all that’s been thrown your way.

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