Some girls are just born with glitter in their veins


Today after radiation she suffered a terrible headache. Usually they wait to get me to come into recovery until she is awake since she wakes so easily and happily. Today when I walked in and saw her it was very obvious she was in a good deal of pain. She had her head buried and when she saw me she could barely reach for me. Her nurse told me she had complained of her head hurting right away…but once mommy was there she couldn’t hold it in any longer.IMG_2766 She sobbed as quietly as she could…since it hurt to cry…”oh mommy ow mommy ow.”…They had ordered her Tylenol already. The pain was so bad she felt like she was going to be sick.

Let me back up to this morning first. A different nurse came in to access her (put the needle into her port)…I could tell this nurse was nervous and the senior nurse was teaching her. I watched very closely, but I also knew that our JLK is a great kid for this role since she takes it in stride and doesn’t complain. Hopefully her being the toughie she just naturally is helps this nurse and future children in JLKs shoes.

So having recently been reminded how my baby doesn’t complain I knew her head was really hurting her. She looked up at me and asked if she would have to spend the night. She was biting down on her lip scared to hear the answer she was sure was coming since she couldn’t cover her IMG_2767hurt. When I said “no baby we wont stay its ok to tell us you hurt. Its ok to cry”  she sunk into the pillow and allowed me to try to help her. I rubbed her head…hard…If I stopped for a moment she just whispered forcibly “mommy no don’t stop.” It reminded me saying (ok yelling) the same thing to Tony while I was in labor. And I smiled for a moment forgetting and imagining one day…imagining this was practice for the day she transforms into mommy…

Then I crashed back …the horrible reality that is DIPG. My unmade memory stolen… And my mind wandered to a different place…to her next chapter…far too soon to come…

Will these headaches happen more? Will she be in pain like this?

Please God no.

I share these intimate moments of ours and especially the pictures so you know how cruel this tumor is. What the face in front of DIPG looks like when not smiling in a dusting of glitter….I can’t say I will always do that…but for today this feels right…

I told her stories and just tried to talk to her. Anything to take her mind off the pain. And I rubbed and rubbed. The tylenol helped quickly, but still on the side of her head it hurt. Now she was angry about it. I rubbed until she feel asleep. Which was the last piece of the puzzle she needed to be out of pain…well at least out of obvious pain. She is so scared to stay in the hospital or miss things she covers her hurt well…I doubt that she shares what she is really feeling…

We left for our apartment with a grumpy Charlotte in tow…I had been back in recovery for quite awhile. We met a Aunt and cousin for a American Girl shopping trip. This morning, on the way out of Gilroy, very few tears were shed since she knew this trip was coming after radiation. As we went to get in the car for the adventure I couldn’t find my diaper bag. We looked everywhere in the apartment and around the complex to no avail. I knew I had it when we got there and realized I set it down to bring things in from the car and didn’t notice that I never grabbed it again.

My wallet was in there and so were Jennifer’s medications.  %&$# ! Another fail on my part. I was letting her down…again….We called the office with no answer and left a message. We decided I would drop everybody off at the store and go back to the hospital. I hated missing he going to the store she had so been looking forward to… but she needs her meds and I needed to be sure to cancel all the cards…

JLK was being so patient. She had been looking forward to this since our 2nd day of radiation. But she didnt complain sitting in the car while we searched…or driving in circles to try to find the bag. Or stopping at a bank for my sister in law to grab us some money (so thankful she was there) She just went with it trusting things would work out.

So I did the same.

I made calls while driving to get cards canceled and meds ordered and insurance to cover it. Then we drove around the parking lot…again and again looking for spaces. But we laughed about it and about losing the one open spot to somebody a little quicker. And I went in the store because I didn’t want to miss the moment. My sister in law mentioned holding Jennifer’s hand through that store was like walking her energetic and large dog. Exactly right. Even though she was visibly tired she was full of joy and exuberance at finally getting inside the American Girl store.

Long story short(ish) I got a call the bag was turned in. Her meds and my wallet in there! The only thing missing was the cash.  Maybe the person that took it just really needed the money but saw all her medications and Lucille Packard info and turned it in. Maybe they were just a punk kid and took the money and tossed the bag. I don’t have a clue how/who turned it in and frankly I don’t really care.

See I stole yet another lesson from my 6yr old today. That even if things seem really pressing and very important…like a stolen wallet…nothing beats a smile and laugh shared…I am so thankful that I didn’t just freak out and go into business mode and miss out on the today that was offered to me…to us…to appreciate I have family around to hold babies and love my boys To lend money and cancel cards.

Then Jennifer wanted to go out to eat. It was late. We were all tired…but I took her cue and we went.  DIPG will likely steal her ability to eat and swallow…so I took the invitation I was offered to share fries and a shake with my best girls…my daughters. We don’t have an abundance of meals left to share together…but we had tonight and I am thankful.

I got my memories. Most importantly the feel of her little hand tugging on mine through the store to get the exact doll she wanted. A baby doll…my always a mother in training….oh she would be amazing….