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My son鈥檚 pediatric ophthalmologist tells a story about a little girl who was about 4 or 5 years old who came in for an eye appointment due to some concerns. It was determined the little girl had severe double vision. She was seeing double of almost every single object in her line of sight. The mom was broken by this news and felt the heaviness of motherly guilt. She asked her little girl, 鈥渨hy didn鈥檛 you tell mommy that you were seeing so many things that were not there?鈥 The little girl, in a matter of fact way, said 鈥淚 thought everyone saw like I do.鈥

This is how I feel about raising a son with a bleeding disorder. Everything about our day-to-day life is normal to us. It is normal to my husband, it is normal to our son who suffers with the disorder, and it is normal to our two younger children. We see our life through the vision that has been created before us. When someone is shocked by what we consider normal, it is a small realization that what we do each day is not normal or how others live their lives and raise their children. But we do not know this because we do not see what others consider normal. We see it through our own lives.

It is usually amplified when we are dealing with an extended hospital stay. The grapevine of friends and family spread, and we are flooded with those reaching out offering help. It is a blessing beyond measure. They question how we handle the situation, and what they can help with. But I often find myself denying the help or saying we are doing okay, because in the grand scheme of things, we are. Nothing about our life in this bleeding disorder world is temporary. This is not a sick child who will get better in a few weeks. Our life is an ebb and a flow. The bleeding disorder will not go away. We have long periods of time where everything is quiet and we live in the space of knowing that it won鈥檛 be like this for long, and we expect and know how to handle when the chaos comes again, usually with a loud crash.

There is a beauty in it though. Just as the little girl did not know she saw double. I often times do not see our challenges either. I have gained skills beyond measure. I know how to fight for all of my children. I know when to say no and when to say yes. I know how to get through the miles of red tape between me and the right representative at our insurance company or how to navigate the disaster that is our hospital billing system. There are small victories in telling them over and over again, that I know what I am doing. I know more than they do, and they get paid to do their work. I do not. I get paid in knowing that my children are rightly taken care of.

When we have friends who are experiencing short terms crisis鈥 that involve hospital stays, I know exactly what to tell them. I know where to go for the good food, who has the best food delivery system, and where to get what at the hospital. I know that the pillows suck, so I ask them to let me bring them a good pillow. Their necks with thank them. I know that the parent beds are the perfect height to roll over to the patient bed so you can be near your child, especially when they are scared and in pain and just your closeness is comforting. This is all hard-fought information. Nothing ever lands in your lap. Often times it is either forced upon you or you need to seek out what is needed. Do I wish I did not possess any of this information? Some days, yes. We all want to escape our trials from time to time.

Just like the little girl, she did not see her issue as a problem because she thought everyone saw like her. I will continue to see like that. This is our life and everyone has some trials or issues to overcome, and often times ours is glaring. It is painful, but why dwell on what I cannot change? Instead, I choose to say, 鈥渄oesn鈥檛 everyone see like this?鈥 Because we all do. It is just different.

I would not give up what I have learned and what I know now. Could the pain and frustration be lessened? Of course. Would I love to take a trip around the world several times over with all the money we have spent on medical bills? I do not choose to look at it as different; I choose to look at it as our normal. I cannot change our normal, so instead we are rocking our normal.

 

Emily, her husband, Geoff, and her children, Logan, Ryan and Payton, live in Minnesota.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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