Jesmyluk

Yesterday CA, Liam, & I had a very busy day at Children's Hospital of Wisconsin (CHOW).  It was Liam's annual getting ready to go back to school check ups with his main specialists. We had 4 appointments starting at 10:30 in the morning & ending at 4 in the afternoon. This is a normal hospital day for Liam & I, but his dad was able to take off work to accompany us.  Thank goodness because getting Liam to the bathroom is getting harder for me as he is just about the same size I am, height wise.  We also see the specialists every spring (end of the school year).  It used to be everyone wanted us in there every 3 months so they could keep a close eye on his frail health, but we usually ended up seeing them once a month because he was constantly sick or at least talking to them at length over the phone.  But it has been nearly 2 years since Liam's last hospital stay.  Right at that point, they decided that IgG infusions weren't enough to keep h...

I've told you how Liam was diagnosed .  And I've told you what happens after diagnosis . As we are finishing up the month of August, (aka A-T Awareness Month) just 9 days left to go, it seemed only fair to inform you of how you can help make a difference in the lives of A-T kids & their families. First off there are multiple ways to make a difference.  Donating money is the easiest.  But it is just one way...not the only way or even the best way.  It's totally up to your personal preference.  Let me also preface this post by telling you, you do NOT have to be related to or personally know an A-T kid (or A-T family) in order to help. How Can I Help Fund a Cure for A-T: 1.)  Donate (online) to the A-T Children's Project at this link here... 2.)  Donate via snail mail... A-T Children's Project 5300 W Hillsboro Blvd. Ste 105 Coconut Creek, FL 33073 USA 3.)  Call 1-800-543-5728 or 954-481-6611 Like I said donating money is one ...

If you read the beginning of Liam's Story then you know how Liam was diagnosed with A-T.  You know that it nearly broke us all.  And that it changed us forever, as it should.  Being a parent is hard.  Being a parent of a special needs kid is harder.  Being the parent of a child that you know will die before you, the parent, is impossible.  Impossible to wrap your mind around.  Wrap your heart around.  Wrap your faith around.  BTW...we have NEVER sat down with Liam & told him about the expiration date that looms on his horizon.  It is hard enough to get through a regular, atypical kind of life.  It is even harder to get through a life filled with sickness, hospitals, Dr appts, blood tests, medicines, injections, etc... without knowing that you don't even get to live to a ripe old age, no matter how many of the former you spend enduring.  Besides, we figure we are all going to die.  Depressing right?  But it...

Normally, I would write a missive in which I share all the boring deets of our every day lives with you, my friends & family, and possibly the complete strangers who might, although I doubt it, read this plain old boring family blog, publicly.  But this month is a special month.  The entire month of August is our chance to raise awareness for a rare disease that affects my family daily.  So here is Liam's story. Liam was born a perfectly healthy 6lb 13 oz baby in May of 2001.  Both of his Apgar scores were 10s.  He came out angry.  But he had the cord wrapped around his neck twice & had to be suctioned out.  Once they got the cord off his neck, which was almost instantly, he let us know in no uncertain terms he was furious at how he came into this world.  Other than initial anger, he was a very happy, easy going baby.  He rolled, crawled, sat, grew teeth, & laughed at all the appropriate times.  His benchmarks were exac...

There is something magical & quixotic about a warm summer night filled with fireflies.  Something that calls to the child within to find the world resplendent with magic & fairies.  The west coast doesn't get fireflies, so it wasn't until we moved to the Midwest that we discovered how simply lovely the world is when filled w fireflies.  I'm so grateful my children live in a land covered with magical creatures.  Where the innocence of catching a firefly in your hand, even briefly, is wondrous & thrilling.  The squeals & giggles pervade even though my children are growing up.  Granted I don't see Kier out there chasing them like he used to & Liam cannot get out & about in our backyard due to access issues but he likes to watch his siblings chase them & catch them & bring them to him so he can see them light up, up close.  McKenna, though she is 13 going on 14, and younger brother Nolan, almost 11, l...

Today was the last day (really 2 hours, not a whole day, don't get me started) of school for my 2 youngest.  Kier finished last week, Liam was done by Tuesday of this week, M & N today at 10:30.  We made it through another seemingly endless school year.  Yay us!  We officially crossed the finish line for the next couple of months we are on our own schedule, whatever it might be.  Yay!!!!!  I'll admit, there have been a few times this year (really every year at this point) where I wasn't sure we were going to make it.  Excitably relieved we're done.  So here is where I post the beginning of school year pics vs the end of school year pics for each of my kids....I should really post before & after shots of myself as well.  I doubt I will but I should. ;) It always amazes me how much they change in just one school year.  Kier's before was rushed & he refused to hold up...