A bad day

"Don't take what you have for granted, it could be much worse."

"Saying someone shouldn't be sad because others have it worse, is like saying you can't be happy because someone else is happier."

I have been struggling with both these quotes as of late. Some days I feel one, while most days I feel both. When I take Scarlette to get her blood drawn, I see all kinds of children and parents. Some of which have it way better, and some of which have it much worse. I've come across children with a broken wrist and think, why can't that be all I'm here for. Then I see children forever strapped to a wheelchair, never going to talk, always having to have treatments done, and I thank God for the simplicity of Scarlette's problems. 

But not today. Today I feel unhappiness and anger. I feel sadness. 

I am constantly bombarded with pictures on Facebook of babies and their parents, happy and giggling, healthy and active. I see their smiling faces, the joy in their posts, the perfect little faces. And all I can think is why can't that be me. Why can't I have the pleasure of waking up in the morning and have my only worry be that my child has kept me up all night, he won't nap, she won't eat all her food. Why can't we have it a little easier. 

When we had Kayden and he was in the hospital for 10 days, I thought that was my trial. I thought that was my time of suffering and my time to grieve for a normal life. He came home and he was perfect. And I was that mother, the one that posted so many happy pictures of their children. But this time it's different. This time we are going through true suffering. 

I took my baby girl to physical therapy this morning and it was a very trying day. We have had to limit her therapy to only once a week because at a $40 co-pay, we are unable to make it financially through the week if we go more than once. And to have to make the decision to either, receive therapy for your hurting child, or put food on the table for the rest of the family, is not one I would ever want anyone to go through. So this morning we had our one day of therapy for the week. And this morning, I almost lost it in front of the whole staff. 

Physical therapy for our little girl is not an easy thing to sit through. She is in constant pain and to have to sit by her and pretend that it doesn't tear my heart apart. I willingly let a stranger take my child and put her through pain, to the point that she is sobbing and unable to slow her breathing until I pick her up. She is so uncomfortable and I am unable to do anything to make it easier on her. But I have to push through, I have to make sure she gets the exercises she needs so she will be able to use her arm in the future, but it does not make the present any easier. 

And what makes it worse, is going on the internet and seeing everyone else's pictures. How they spend their days. Going to the lake, the park, the beach. Going to a fun place with their babies. Laughing and smiling and making memories. And so far, most of the memories I have made with my poor little girl have been ones that I would rather not relive. Our memories are of heartache. Pain. And hospital visits. 

She has developed a new growth on her underarm, one that has doubled and doubled and doubled since we saw it the first time. She has had an ultrasound on it, they believe its a cyst. But we are still waiting to see where to go from here. It hurts her constantly. She is uncomfortable and it has now grown out to her back and is the size of a golf ball in one area. And this morning she developed a rash around her mouth, not sure why or where it came from, but there it is all the same. As if she needs another thing on her body. As if we need another thing to worry about. 

Tomorrow while other parents are taking their kids to the pool, watching a movie, playing with blocks, we are meeting with a plastic surgeon to see how many surgeries our 3 month old is going to have to endure. As if the two she has already had aren't enough. 

Instead of my husband surprising me by taking a half day at work so we can go do something fun and exciting, he is taking a half day off so we can once again go to the hospital we have become all too familiar with. 

Yesterday I received a present from my grandmother, some cute clothes for both kids. And I picked up the little dress that was meant for Scarlette and touched around the garment, looking at the details. My sister looked at me and asked if I did that to every outfit I see of hers. I asked what she meant, and she noticed that when I picked it up, I opened up the sleeve subconsciously, evaluating whether it would fit her entire arm in it. I didn't notice that I did that. I didn't notice that every time I see clothes for my little girl, I think about how they won't fit. I think about how she isn't a "normal" size. I think about how we will have to take it to Matt's mom, so she can fix it, so Scarlette can actually wear clothes. And all I could think was how much easier it could be. How nice it would be to go to a store, receive a gift, or get hand-me-downs and be able to put her in the outfit that day. 

There are so many things we can't do. So many limitations. So many conditions and rules. 

Because of her condition, we are unable to be around anyone that is sick, anyone that has come in contact with anyone sick, or anything that might have too many germs. 

Because of her condition, we can't have anyone babysit her because they haven't had training on a broviac line. They don't know how to help her if she is in too much pain. They don't know the procedures or the symptoms to look for if something has gone wrong with her immune system. 

Because of her condition, we can't take our son to the park, the church, a friends house, in fear that he will get sick and in turn put Scarlette's health in jeopardy.

Because of her condition, we can't have a much needed date night, because we don't have anyone that can care for her like we have to. No one knows how to do a Heparin flush, give her medication, or the tricks to make her eat even when she's in pain. 

Because of her condition, I am jailed in our house, only allowed to leave to go to the hospital. I have quit my mothers group at church because I can't come in contact with too many people who could expose me to a virus. I am stir crazy, only talking to people under the age of 2, the conversations of which usually only include the words no, hungry, no, nap, no, and eat please. 

Because of her condition, we are constantly in fear. Every blemish, every small fever, every cough, calls for fear of something else. Something else that may be wrong. Something else that we might have to rush her to the hospital for. 

And yes, I know I am in a horrible mood. I know I am just having a bad day. But today, I know it could be worse. It could be a lot worse.

But all I can think, is it could be SO much better.