Monday, July 28th, 2008 by Deb Schwedhelm
Today, we (my husband, son and I) met the Mikulak family at Starbucks and then went to Del Mar’s Powerhouse Park. When I arrived, Max was sitting in his Dad’s lap but soon hopped up to tell his Mom something…
…and then snuggled back into Dad’s lap. This whole series melts my heart. Max hopped up and then wrapped his Dad’s arms around him…and had to get them just right.
And then the cuddle was just right…
But it didn’t last for long b/c Max had to get up to tell Mom that his button (g-tube) was leaking really bad. Mom (and Nicky) checked it out and it was. Max also wanted his wheelchair. And he was really happy when Mom said that she would go home, get Max’s wheelchair and stuff to fix his button, and meet us at the park.
I just love this moment between Max and his Mom…
So Andy, Max, Steve, Ryder and I walked to the park, while Melis and Hannah went back home to get Max’s wheelchair. Max decided that he wanted to play on the rocks for a bit before going to play at the park. Of course, the other two boys weren’t going to complain about climbing rocks.
Max was really excited about the squirrels and kept ‘shooting’ them. We learned that what Max was really doing was…taking pictures of the squirrels. Of course, I thought this was so cute…”Dad, I just got a picture of the squirrel up really close”, as he pointed his “shooter” at the squirrel.
I loved this moment where Max and Nicky were looking at the squirrels behind the rope.
Then it was time to go to the park because Mom had parked the car and she and Hannah were on their way with the wheelchair.
Max hopped right in the wheelchair and wanted to be covered with his blanket. Everyone kept asking him if he was okay with the blanket on because we were all sweating. Max kept saying that he was fine. He was just happy to sit in his chair and play with his basket of Star Wars figures. I asked Andy if Max was using his wheelchair more lately. He told me yes, but he thinks it also may now be a bit of a crutch. I commented that maybe it’s a bit of a security blanket for him…things just feel better when his wheelchair is there. But Max did tell me when we were at Starbucks that his legs were hurting today.
And then Max was ready to go. “Let’s go. I’m really, really tired.”, Max said to his Mom. The shot below of Mom caressing Max’s cheek is another moment that just melts my heart.
Off we went…
And all of a sudden Max got a second wind and was ready to go swimming 😉
I will be shooting Max again tomorrow afternoon. It’s the first time that Max is meeting with his Hospice care providers (Nurse and Doctor) and I want to capture it. The Mikulaks signed on with Hospice to give the family a break from being at the hospital so much. The Nurse will come to their home, draw any needed labs and then send them to Children’s Hospital. Then the hospital will call the Mikulaks with the results. If a transfusion is necessary, they will go to the hospital.
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