Monday, December 7, 2015

Holiday Prep

Somewhere Fall happened when I wasn't looking. It is amazing how time flies by when you are not
on weekly chemo! The girls are happily decorating for Christmas and enjoying the fact that they can fully participate in festivities. Last year we were under house arrest or we were inpatient from chemo so we sat out on many things. This year Emma has already been to Disneyland, attended a birthday party, and been to church!

A few things have been happening in the background. We are waiting to find out which wish Gracie will get for her Make a Wish. She keeps asking me if we are doing it today! She is very excited. Emma got new glasses after we saw the Pediatric Neuro Ophthalmologist. It seems that her one seeing eye is getting better post chemo and we actually got to decrease her prescription! What a blessing.

Daddy and I have been running more races and working on getting healthy for this kiddos. His back is much better, he still has painful days but he is finally able to go to work and do yoga with me at night. I have seen a huge change for the better in myself. Not only do I look better but I feel better and that is a good thing because as I feel better Emma feels worse. She is really struggling with her emotions and hyperactivity. I feel so bad for her, she is so advanced she will say things like, "I am so grumpy and I don't know why!" It makes me want to cry. We are still waiting on Psych to see us at Stanford so in the mean time I have her deep breathe with me, do yoga, and apply her oils. Lately she has been asking to run with me so I am going to start taking her with me on a small loop at the
beginning of my run and drop her off to finish. If anything it will give her a good healthy outlet for all this energy!

Upcoming things: We go back to the Neuro Surgeon right before Christmas to check in and go over everything, he is the NF expert at Stanford. When we go we will be taking teddy bears from Trader Joe's to the hospital for all the kids who are stuck inpatient over Christmas. If any locals want us to drop off any new and unopened toys or jammies we can bring them for you! Next week I will be sending out the She's a Fighter Christmas boxes to Alanha, Adriana, Ariana, and Izzy. If anyone was planning on adding anything to their boxes please get it to us this week.

Wednesday, December 2, 2015

Normal or Not?

I spend many days pondering this question, is this "normal"? Am I seeing normal behavior from twins? Is this normal for a premature baby? Is this normal for a child who has brain tumors,NF1? Is this normal for a child who went blind at 2 years old? Is this normal for a little girl who underwent weekly chemo treatments for a year?

As parents we try not to compare. We try not to say what is normal and abnormal for a child and instead see the child on a spectrum. Ya, in a perfect world.

If I was a perfect mother I would never ask myself the normal question. But I am flawed and I ask that those questions above to myself several times a day.

For a child of her age Emma has been through so much. She has not lead an easy life. I argue with myself to give her room. But...

Life with Emma is not easy. She is easily angered and throws wild rages. She rarely sleeps and we have tried everything from essential oils to noise machines to light to no light to security objects. No matter what we try she is up several times a night. She turns on the lights, runs through the house, toilet papers my bathroom, empties an entire bottle of shampoo in her dry hair, and paints with toothpaste. I hide things and she finds them. We take turns getting up with her at night and directing her back to bed only to be met with an Emma rage at 3am. Now the whole house is awake.

I try to have her work out with me during the day and do yoga to center her but each thing I model and do with her I am met with fierce resistance.

So I spend my days asking, is this normal for a 4.5 year old? Will she grow out of it? Will it just get worse? As we wait for Stanford to get us into their Psychiatric clinic wait and pray and try to run off my frustration. I love this kid and the questions of normalcy just will not stop.