Archives for the month of: September, 2013

Graham doing his part to help Grace dance

“Gracie walk” he said as he took her hand- and they took a few steps together before she started to trip.  Graham did this.  Graham, our not quite two, continually amazing us, little boy.  I just loved them both so much in that brief moment…it was kind of a normal moment (if you don’t think about it too hard 🙂 )

It’s not the first time he’s included Grace, or tried to help her.  He often tries to share his snacks with her.  He tries to get her to play catch with us, saying “Gracie ball” and tossing it her way.  Often she has no idea it’s coming.   It doesn’t stop him from throwing it to her again.

In the church nursery before we are even there to pick them up Graham gathers up his coat, her coat, and the diaper bag.  He’s not leaving without her.

When we first got the swing set this summer there was a night that he was insisting we go outside and swing.  Kevin wasn’t home yet – it was just the three of us.  I put Grace on a blanket in the yard to watch and went to buckle him in.  “No Gracie” he kept saying and refused to be buckled in.  I put him down and he ran to Grace in the grass, pulled her by the arm and said “Gracie swing”.  I tried to explain to him that they couldn’t both swing, (Grace didn’t have her own swing yet.  She could only swing with me on the porch swing that’s also a part of the swing set.  I couldn’t leave her on the porch swing alone to push him- there’s no way to make sure she’d stay there…not that he could understand any of that.)   He just kept pulling on her arm repeating “Gracie swing”.  Luckily Kevin arrived home, everyone could swing, and Graham was happy.

He claps for her at baseball.

He pounds on the window at dance yelling “Gracie, Gracie” trying to get her attention.

He likes to help when she’s getting meds in the morning.  She’s sleeping and he’s a happy (and loud) morning person.  “Shh, shh” we say and put our fingers to our lips as we go in the room- and then he sees her and says out loud “Gracie!”

It’s a treat to sit in her wheelchair.

You should see it when he hugs her good night – so precious!  He lays his cheek on top of her helmet, his little arm on her back.

We have to be careful though, one night Grace had a seizure (a pretty hard one) and Kevin and I both jumped up to get to her.  Graham began to cry, his little face just fell, “Gracie” he cried…and in that one word were so many questions… Is she ok?  Why did you jump up?  Am I ok?  Are we still ok? Why am I scared?  I picked him up, dried the tears and told him she was ok, he was ok, and we were going to be ok.

Grace for her part acknowledges Graham.  They fight for toys – and a lot of times want the same thing.  She chews on Graham’s Elmo’s doll.  She also reaches for him.  Pats him.  Sits next to him.  And she endures the hugs quite willingly.

It really feels like there is something between them I can’t capture in words.  I know it won’t always be exactly like this, so I knew I had to try.

He has already surpassed her in so many ways – but I still hope he gets to be the little brother – and she gets to be the big sister – at least a little while longer.

And because I haven’t said it in awhile I just feel the need to say again, “normal” development is amazing and its amazing-ness just continues to astound me.

Joy

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In less that a year I’ve attended two funerals, both for children. Children with problems that should make “adult problems” insignificant, problems that they did not bring upon themselves, problems that they had no ability to control. These problems were far from insignificant to their parents; if anything the problems these children faced day in and day out were just as much as monumental to the parents as it was to their child, perhaps even more.  When a person is so reliant on another the two (or three) essentially become one, which can make it difficult to find or create a separation

Even as the parent of a child with her own “problems” I don’t know what to say to these fellow parents…I wish this didn’t happen…I’m sorry for your loss?  I feel foolish saying something so ambiguous, I of all people should be able to relate better than most, help give some level of comfort, and provide some form of understanding.  I want to say something that will help, something that may help them understand their loss, something that I would hope they could say to me if the roles were reversed, something profound.  Raising a special needs child can be a lonely place and it makes you want to say something to the effect (yet more profound) that ‘I know what you have gone through and while I still can’t fully imagine I have an idea of what you are about to go though.’

At the visitation the grandmother of the child said to Joy and I that it was good to see us and glad that we made it to the visitation; considering I grew up in a small town with the father’s family I responded that I wish we were seeing each other under better circumstances. She responded that this was the best, it was his time, and that this is a blessing.  That kind of took the breath out of us…she gets it (that kind of profound).

While it’s hard to know what to say I feel that the most important thing goes unsaid.  There is a connection amongst special needs families, a tip of the hat if you will, a nod, an understanding that really needs no words.  You see it in a parking lot, at a restaurant, or grocery store.  At the recent funeral I said to the father that ‘I’m sorry and I really don’t know what to say’ all the while imagining myself in their shoes, I continued with ‘you were the best parent you could be and I’m sorry’.  The father of this child looked directly at me and responded “you know” (even more profound), yes I do know.  I know the fear, determination, anxiety, happiness, stress, and joy that come along with raising a special needs child.  I know that life is dramatically different now and will be dramatically different after. I know that decisions have been made that would have never have had to been made. I know there have been many sleepless nights, too many hospital stays, too little rest, and just not enough time.  I know that a child with special needs is probably the strongest person you know and whose appreciation of something so simple could tell you they were feeling better or happy.

To K & S…you are wise beyond your years; you have been good and faithful servants, well done.

kevin

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Things around here have been a bit rough. Things aren’t going the way we want them too, and a lot of those things are out of our control or our ability to influence.

But we try. We are disappointed and anxious, but Grace keeps going so we do too.

It’s to the point though where I’m feeling a bit sorry for myself. I want a vacation, a chance to relax, to build back up my patience and optimism. But as I look at the coming months any vacation time I’m taking from work is not vacation. It’s Grace’s doctor appointments, therapy appointments, meetings for school, classes to learn about communication devices, etc. Nowhere in there is a movie, or massage, or trip, or chance to catch up on laundry, or just find somewhere to read a book. There aren’t fun outings planned, places the kids have never been or anything like that. Like a lot of families weekends aren’t necessarily all that relaxing either. I wonder sometimes how we keep going.

Baseball season starts this weekend – and I’ve been thinking a lot about Grace’s last game of the spring season, reflecting on it cheers me up a bit. Grace was paired that day with a young man who told me he was just finishing 8th grade. I gave him the two-minute spiel about Grace and placed her little hand in his so they could practice walking together a bit…so he would know her speed and style. If you haven’t had the privilege of holding Grace’s hand then there’s something I need to explain here. Grace often chews on her hand and so it’s often wet and a bit slimy…officially we have termed it “goo”. So, I placed her gooey little hand in his and he made this face…ever so slightly that just screamed ewwwwwww. And then it was gone and they did their thing. She even tripped as they were “running” the bases and he picked her up and they carried on. When the game was over I was talking with her PT from school and her teacher…and the PT commented to Grace about how wonderfully she did getting around the bases. She went on to say that a year ago no one could walk with Grace except for Kevin and I – but that just a year later Grace was moving even better and with the help of a young man that Grace hadn’t even met until that day! Amazing! Between the teacher and the PT being there to support her, the PT’s observation, and the young man’s ability to so quickly and thoroughly accept Grace’s goo and help her be part of the game – it was just good. The kind of good that warms your heart and gives you strength when you feel like you don’t have anymore.

And one more thing, Grace is electric now! Her VNS has been turned on. We are on step 2 of a 6-step process to activate it fully. When it goes off she does experience some coughing, and sometimes it sounds down right horrible…we’ve pulled out the suction machine more than once to try and help her get back in control. We are told this will pass…we are waiting for that. But we know most likely it will be worse before it gets better – we are only on step 2!

There is one thing that I really like about the VNS – it seems to be working! Sometimes when Kevin or I activate it – Grace’s seizure will just stop. Stop. Other times it makes it less then it could have been. And overall she is having fewer seizures. It’s one thing to see her go into a seizure and know you have to get to her to protect her – but now it’s this amazing that we can actually help her get out of it more quickly! What wonderful technology! In spite of the coughing and gagging…I am so grateful!

Joy