Nearly every time that someone hears about our family's situation of illness, they don't really know what to say and the conversation just drops there. I assume the reason is that no one really understands what it means to deal with illness day in and day out, unless they have been there. The thing is, although I know they are out there, I have never met anyone else who has been sick with a sick child.
It is hard to be a chronically ill mother. It is hard to be the mother of a chronically ill or special needs child. But I don't think it can get any harder than being a chronically ill mother of a chronically ill child.
I think most difficult is when you are both going through things at the same time. It is so tough when we are both sick. Any mother knows how exhausting it is to take care of a child with a 106F fever. They are very cranky, don't listen, won't do anything they should and do everything they shouldn't, don't want to communicate and would rather you read minds. Now make that fever stretch out for a week. At the same time, you are exhausted from being sick yourself. You need to sleep badly, and could probably sleep for 40 hours straight if the world stopped for you, but you can't sleep much at all, because you need to make sure your child is breathing, since fevers are the most common time for him to stop breathing in his sleep. Your body hurts so much that you just can't stand it, but still you need to get to doctor's appointments and therapies.
The world of doctors and specialists is a world all its own. Between the two of us, we probably have about 10-15 doctors appointments a month. The most frustrating parts of the medical world are when doctors give you conflicting information and when they don't listen to you. Both happen a lot. Just yesterday the children's cardiologist called. He has an appointment with them next week. Originally the appointment was made, because the day before his ear tube surgery the anesthesiologist decided he needed cardiac clearance to be able to be under anesthesia. Well when they called yesterday, they told me that his last echocardiogram showed that he doesn't have a PDA (hole in the heart) anymore, but he still has a PFO (a different hole in the heart). Well the last explanation of this that I got was that he still had a PDA and no ever even told me about a PFO. When they ask if I see any symptoms I tell them that he tires easily during play and has to rest often. They just act like I don't know what I am talking about. His physical therapist today brought up that he tires easily and that she didn't think it was from weak muscles, but seemed more systemic. So it is frustrating to try to tease out who is right. As an advocate for your child and yourself, you learn a lot about medical conditions, but you still have to rely on doctors and accept what they tell you since you don't know enough to know if they are wrong.
Then there are the moments that tear at your heart, because everyone has to deal with this and you can't do anything about it. Like when your husband is looking at you in a sad strange way and you ask why and he tells you that he just realized that he will probably have to live without you one day. Or when he looks at your child with love and says that he wishes so much that you could have another. Or you think of a beautiful dream for your future, but then you realize that there is no way that could happen in your situation. Or when you have to add one more specialist to the list, because one more system is starting to fail. Or you have to take a dangerous medication that has the potential for terrible side effects, but there is no other option if you want to keep your body running. Or when your child is too tired to play and has to lay down. Or he sees another child doing something that he can't and he tries so hard, but just can't do it. Or you have to explain to him that he can't do some things like other kids, because he has certain issues that make that unsafe while it is safe for other children, but he is only two and can't understand that. Or that you can't give your family a normal life, because being ill prevents you from doing so much. That your child would not have special needs had he been born to someone else since it is your illness that caused him to be born so small and underdeveloped (I know there is nothing I could have done differently, but the fact that his disabilities are due to me is an undeniable fact of life). Or, the most heart breaking, when you think about the fact that it is real that you might not be there for your child someday when they need you. What if he hasn't grown out of some of these challenges and needs your help, but God takes you back early?
And everyone deals with this differently. Some (more males I have noticed) decide to pretend this is not real. Some get so stuck on it that they can't finish a conversation with you. Some treat you like you are crazy. But most just have no clue what it is like and can't relate to your life and you end up feeling alienated.
Being ill, facing death, and having to build an acceptable life around so many barriers changes you. Unexpectedly, it has made me more positive and more grateful. I see my son and I see a beautiful miracle I have been given. Every single day, complete with struggles, is one day I almost didn't have with him. The day he was born, I was told there is a very large chance your son will not live past today and you may not make it either. You are dying and if he is not born, at only one pound, you will both die. This is such a huge, life changing conversation, that you will never be the same after. You can take that change and become trapped or you can rise from the ashes. I don't really know if you have a choice. It just happens. Most days I feel like I have risen from the ashes, but some days it just doesn't feel any better. Some days I just need the world to turn off around me, because there are just too many things at once. I have always had an insatiable thirst for freedom and adventure and creativity. And at those moments I just need to lie on a beach with no thought to medications and therapies and doctors and how to make it on one income and heavy responsibilities and future and just be. That is not real though, for if I ignore these things it will get worse. So I just rock out to Pantera's Cemetery Gates as loud as possible and eat Junior Mints. And cherish the good moments, like reading to my son and watching him accomplish things that he has struggled with and sharing beautiful simple things in nature.
I'm not sure if this really sums up what it is like being a chronically ill mother of a chronically ill child, but I think it gets one step closer to filling the gap.