Taking a Break…

June 17, 2011

What I'm reading today

If someone asked me what has changed the most since my daughter was born, I would have to say it’s the amount of time spent at appointments.  Don’t get me wrong, I am exceedingly grateful for the services we have here in Canada, and I don’t know what we would do without them. (And I know some of our wonderful therapists might be reading this, and I love you guys!)   But that said, I just did a quick tally of the number of appointments and meetings we’ve had this year  directly related to Down syndrome, and the total is well over 25.  That averages to more than 1 per week.  We’ve had appointments with the ophthalmologist, the orthoptist, the speech pathologist, the cardiologist, the pediatrician, the developmental pediatrician, the ENT, the physiotherapist, the occupational therapist, the audiologist – am I missing anyone?  Blood tests, hearing tests, surgery to put tubes in, a neck x-ray this Monday, glasses adjustments, meetings with her “team” at daycare - a re-taking of the blood test because something looks fishy.  Honestly, sometimes I feel more like a case manager than a mother. 

Eyepatches sure are cute these days. However, she still hates wearing it!

Then this week my son fractured his wrist playing What Time is it Mr. Wolf?, so on top of everything else, we had a visit to the walk-in clinic, a visit to the fracture clinic and everything else that is involved with supporting a right-handed kid who has a cast on his right arm. 

A friend of mine whose son has an unusal syndrome called Kleefstra’s syndrome wrote a post about parents of children with special needs and mental health this week, and it was very timely as it’s been one of those weeks that make Mama feel like she’s going to crack!  On top of the wrist fracture (seriously, who fractures something playing What Time is it Mr. Wolf?) we have to get our daughter to wear an eyepatch for an hour every day as the ophthalamologist is afraid she’s getting a lazy eye. (Ahoy, Captain Rachie!)  Furthermore, I found my daughter trying to show flashcards to her dolls this week making me feel like perhaps we’re spending too much time in therapy!

So by Wednesday, I was scanning the calendar to see what I could cancel.  At one point of my life, I would have struggled to do it all, and would have been a mess by the end of the week, and that is why I include this post today.  I think by reading about other people’s experiences, we give ourselves permission to take a break.  I read The Boy in the Moon by Ian Brown last fall, in which he writes about  raising a child with a rare genetic condition that results in severe disabilities.  At one point Brown and his wife must make the excrutiatingly difficult decision to have their son reside in a group home because 2 people alone could not handle the round-the-clock care of a growing boy. 

We have nowhere near the challenges that the Brown family has had to manage, but it was a direct result of that book that I decided to enrol my daughter in daycare on Fridays — a day I don’t actually work outside the home.  Of course, I still feel guilty and find myself justifying the decision when I tell people: “She LOVES it! It’s so GOOD for her”.  It’s all true, but I still kind of feel bad even though I usually spend Fridays cleaning up the house, doing laundry, or running some mundane errand like going to the dentist or getting an oil change.

So this morning we were supposed to go to a speech therapy session, and I just decided that this appointment can wait. Little pirate girl is at daycare happily playing with her friends and actually wearing her glasses, which she does for them but not for us.  And I’m in my house– by myself.  It’s so quiet and peaceful and my batteries are recharging.  I’ll wrap that baby gift I’ve had for 2 months; I’ll exercise; I’ll make something that involves chopping up vegetables for dinner. 

Oh, and I might read a little something that has nothing to do with Down syndrome– ironically it’s called Freedom.

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{ 6 comments… read them below or add one }

Andria June 17, 2011 at 10:58 am

Thank you so much for this blog, I love reading it!! You write everything I feel, its so nice not to be alone!!!

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Heather June 17, 2011 at 11:11 am

Thanks for your comment, Andria… I know, I feel the same way about reading about other’s experiences. Hope you guys are doing well! xo h.

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Sarah June 17, 2011 at 11:37 am

I couldn’t agree more Heather. I looked at my planner the other day and realized that there were 3 weeks in a row where I had 3 or more appointments. It gets so crazy that you forget that you are a person who needs to relax and recharge every now and again. I think you have the right idea about taking your Fridays off. It is great for you and will be great for Rachel too when she sees that Mom is more relaxed and happy! And she will learn to do the same for herself as she grows. I know that many people with DS love to please the people that they love. It is so valuable that she will know that she needs her time to please herself too! So get rid of that guilt! Rachel is lucky to have such a devoted Mum!

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Heather June 17, 2011 at 1:26 pm

Thanks Sarah… it’s lovely to have such supportive friends! And we do have to remember – we’re in this for the long haul. It’s a marathon, so we have to pace ourselves. We want our marriages to last; we want to be calm and happy parents so that our children grow up in a peaceful home. Of course, we also need to take care of our own health because we might be taking care of our children for a lot longer than other people. Hope you consider cancelling a few appointments every now and then… it’s amazing how it helps!

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Maureen Braun June 17, 2011 at 2:06 pm

I loved this post Heather. It reminds me of how important it is to take care of oneself in order to take care of others. It also reminds me of how when you are parenting a child with special needs you need to pay close attention to the fact that your life is going to be specifically different and you will need to create strategies that suit your circumstance.
We probably worry too much about how people will judge us instead of what is best for the whole family unit. Many years ago I learned that some things are” not important”, some things are “important but not urgent” and some things are “urgent”. I learned to get clear about that as often as possible.
Keep on writing this blog Heather. It helps others and I know it helps you to get better clarity and compassion for yourself and your challenges.

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Heather June 17, 2011 at 2:16 pm

Thanks Maureen – yes, it’s interesting because I often find I’m less worried about others because I understand our circumstances are different and completely feel that no one has the right to judge us. And you’re right, your family is so much more important. When I get caught up on Friday, we have wonderful weekends together, so it ends up being better for everyone!

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