Having a  child with special needs can consume every minute of your life if you let it.  Yes, you go through the grief of it all.  Yes, there is a depression that hits, and yes, there is acceptance.  I’ve been through it and I’ve come out the other side a stronger and more patient person for it.

Jamie has taught our little family patience, acceptance of others, and most of all unconditional love.  Okay, every child can teach that.  But with Jamie, it’s a little different.  Jamie has cerebral palsy, a condition that affects 2 or 3 children per 1000 births.  However, Jamie is unique to our family.  No one in either side of our families had ever had a child with special needs.  So, we’re kind of the pioneers and we have the task of teaching our large clan all about it.  Fun!  A learning experience!  Most of them have accepted Jamie for who he is and cheer us on when he meets a new milestone.

Having a kid with special needs can tear a marriage apart.  We chose to go the other way.  We made a pact that this would not end our marriage.  We realized that Jamie only has two parents and no one else would love him the way we do.  He needs us to be together, and we needed each other to lean on.  We went through the denial, anger, bargaining, depression, and acceptance.  Most of the grief stages were simultaneous because when you have a child who needs you there isn’t time to do them in the proper order like your average person in despair.  Sometimes, my depression was part of my anger.  Sometimes I  denied while bargaining.  It was a crazy mixed up time but I’ll tell you, my husband was right there with me.  Thankfully, his stages of grief weren’t usually the same stages as mine at the same time.  We have always had that counterbalance.  It still works for us.

There was a time when I was on anti-depressants.  Much needed anti-depressants.  And then, my depression turned into anxiety.  Every cold, every sniffle was a big deal.  I can’t tell you how many co-pays I paid to the pediatrician for suspected infections (sinusitis, bronchitis, ear, etc.).  Jamie also had uncontrolled asthma at that time.  Add in all of the delays in development and it was a very depressing time.  What we thought was going to be the happiest time in our lives turned into one of the most miserable.  We had to give it time to heal.

So here’s the thing: Sometimes your grieving is about the things that could have been.  You see a child of your friend playing soccer and for a brief moment you think, “That could have been my son”.  Or you see a child singing and you look at your beautiful non-verbal daughter and think, “I wish my little one was able to speak, let alone sing.”  We can always find something we wish our child was able to do, or see, or say.  This happens to parents of neuro-typical children as well.  Everyone, at some point in their parenthood, thinks of what their child could be.  When I was pregnant with Jamie, Joel and I never for a moment thought he wouldn’t be anything short of perfect.  He would laugh, and crawl, and walk when he was supposed to.  He would tell us about his day at school.  He would play with his friends.  But that’s not exactly how it turned out.  What we got was this complicated little baby who was very sick at first.  And then you know what?  We figured out he IS perfect.  He is the version of perfect that he is supposed to be.  He does smile, laugh, crawl, and walk.  He did them exactly when he was supposed to.  He may not really speak words when he talks, but he doesn’t need to.  His eyes tell the story and no words could ever do it justice.

We hear all kinds of things from well-meaning people.  Like, “I’m so sorry he’s not normal.”  Seriously?  What’s normal?  Are YOU normal?  Because if so, you would know that’s not anything you say to a parent of a KWSN.  Or, my favorite, “What’s wrong with him?”  I always respond as sweetly as I can with, “Nothing.  What’s wrong with YOU?”.  Now, you may take that as part of my anger stage of grief.  And you’re probably right.  When a stranger really takes an interest in Jamie, I’ll talk with them politely about cerebral palsy and try to educate a little bit.  When they are rude or stare, I ignore them or ask them, “Is there something I can do for you?”.

In the middle of all of this chaos, we call our lives, we added our daughter, Riley, who has become Jamie’s biggest cheerleader.  They are best friends and one only has to see them together to see the love they share.  Riley loves to hang out in the dugout at Jamie’s baseball games cheering him on.  She helps with Jamie; she’ll help him pick out books, or reach his juice box.  She helps us keep an eye on him when we’re traveling: she sits in the van next to him and hands him the toys he can’t reach, or lets us know when he’s upset/hungry/happy, etc.  In all of this, Riley has also added some much-needed joy.  She has made this house happy again.  We still have our struggles with illnesses and the like, but we know that both of our kids need us to be strong.  They need us to be happy.  We’re working on it, as a family.  We cannot let the grief take over.

So, on this Tell Us Tuesday, I’d like to know what stage you’re in and what exactly your grief is.  Please, share with us so we can all learn and heal together.

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