It's not polite to stare

Today my kids were in rare form. They were getting along really well so we decided to treat their behavior and the fact that we only had one appointment (school) this morning with a trip to the zoo! It was hot but the breeze was constant making it pretty bearable. We arrived at about 12:30pm just as a few buses filled with kids pulled up. I forgot that it's May, the end of the school year for healthy kids. Denny and I looked at each other glad that Kayla was willing to keep her mask on despite the heat.  We pulled up to the gate and the parking attendant asked if we were with St. Jude? I said yes.  He reminded us happily that everything at the Zoo is free for patients and their entire family... parking included! So, off we went as he excitedly waved to Kayla in the back seat yelling, "Enjoy the animals".

Kids were everywhere. They were wild. Almost like they really belonged in an exhibit. They were running and screaming. Playing in the fountain despite how dirty and gross the water appeared to us. Some of the kids were fully drenched swimming in the not even knee deep murky water. Spitting it out at each other making my whole body cringe.  We walked around carefully not touching anything. Pulling chairs out with our feet. Sanitizing all along the way. Never standing too close to others. You become such a germ-a-phobe when outside of the bubble of St. Jude where everyone is very careful about not only their own children, but everyone not getting sick. We know the consequences of what could happen and try our best to protect everyone all the time here.  I watched as the kids would walk by Kayla staring. Some even walking into objects because their head continued to spin as their feet kept moving forward.  I could tell that some of the prolonged stares were bothering Kayla a little bit so I reminded her about how shocking the blue mask appeared to her the first time she saw kids wearing them also. She nodded. She was actually able to brush off the stares easier then I was.  I can see a slight glance out of the corner of your eye acceptable, but not when staring at my kid is better then the bat in the exhibit right in front of your eyes!  Anyway, I think sometimes it's just easier being here with all of the kids looking the same. We feel protected in every way.  Normal.

What will it be like when we get home? When things are not normal for us in any way after this is over with. Far from it! We will now be planning our work and school schedules around the check ups that will follow for the next 5 years. And that is assuming Kayla's MRI's and Lumbar Punctures all continue to come back clear after this is over with. It's a constant thought that we can't escape. A feeling that you can never even begin to understand unless you too are going or have gone through it. For the rest of my life I will either be grieving or worried. To me,  having faith means that you don't just assume that everything will be ok, but you accept anything that comes your way. You just try to trust in the master plan and remember that things will eventually be ok. No matter the outcome. You just try and live each day with a smile on your face and love in your heart.

Tomorrow Kayla will have a Brain MRI,  Physical Therapy and Labs before we meet with B Clinic to hear the results.

Just before dinner tonight, we had a note slipped under the door with a little surprise for Mother's Day. They will be celebrating it here at Target House this Sunday instead of next.

I have signed up for a haircut and nails. I'm so excited!!