A typical day for me requires me to get up extra early in order to get a couple of minutes for myself. I stumble down the stairs, take a deep breath as I hop on my bike. I usually get about 20 minutes before I hear the pitter patter of tiny feet waking up for the day. Otherwise, I have to watch the time to make sure that my husband gets up in time to leave for work. But for that 20 minutes I prepare myself for whatever may come my way during the day.
I walk up the stairs feeling refreshed and ready to start the day. I usually am greeted at the top of the stairs by tiny eyes, a thumbs up and a request for milk. I swoop her up and turn on the coffee machine. I begin to help my husband get ready for the day as another sleepy set of eyes walk down the stairs. The littlest one is whining that she wants to be rocked. This is a special time for us and I want to make that happen as I want to serve my husband by helping him get ready too.
I sit down in the chair and rock her and rock her. Sometimes we read, sometimes we play the I Pad. Sometimes we just watch the fire and rock. Sometimes she falls back asleep. Sometimes she is sick and just wants mom. The other girl is now awake and she wants to snuggle too. The day has started and mom still feels like she can tackle any problem that may come.
Once we say bye to dad, we have to start our morning routine. Usually, within several minutes, I feel defeated. I struggle to get Lydia to use her shake vest. As soon as I have wrestled her to the ground and I manage to get her locked into her vest, we start treatment. Like clockwork she immediately says she has to go potty. I grumble, but I unhook her and she runs.
I chase. She does not like her vest, she does not like the treatment. She is smart and knows that she can get out of the vest when she says that she has to go potty. I make her go. She fights me. I am trying to keep the other girls on track getting ready for school. I am exhausted. It is only 6:00 AM.
This is just the morning. The day is long and we haven't reached more than two hours of awake time. What else do I have to look forward to today? I get to do another treatment for her, I get to give her medicine, I get to talk to the insurance company, I get to drive her to another doctor's appointment, I get to write more goals for school, I get to complete a packet for continuing her insurance. This is what I get to look forward to for the day.
My mind drifts back to days before Lydia. I was busy with just about everything. I had the schedule to volunteer, meet a friend for lunch, go shopping. I had a chance to do more of what I pleased. I did not have a constant worry on my hands. My life did not seem to change near as much as it does today. My friends and family seemed to understand me better. My relationships seemed to be meaningful and I had more conversations with people and not just medical and insurance folks.
I understand that you may think that you are helping me by not "burdening me" with including me in planning this or volunteering for that, but you really are taking away the one thing that I am looking forward to. I understand that my life seems busy and it seems like I am preoccupied, but I seemed to have buried myself in my child's issues because I have slowly been removed from committees and other opportunities as a way of helping me. I seem to have become isolated because people feel I am too busy. The problem is, no one has asked me.
This is my life. This is my daughter. She has medical issues. She has Down syndrome. Sometimes it is very consuming and sometimes it may interrupt me from completing something I signed up for. But I promise you, these opportunities are very important to me. I promise you that I will give it my all because it will be the one thing that I can look forward to, the one thing that can take my mind off of something other than her medical issues, insurance, and appointments.
I also know that there are ways to do things unconventionally. I mean that instead of having the meeting at school, can we meet at our home. Instead of running errands by myself, can you come with me so I can just run in by myself and you stay in the car with Lydia? Can you come and sit and rock her while I make the phone calls? Will you be able to watch her while I work on something? Would you be willing to let Lydia come with and I will give you all of my time?
If there is one thing that I have learned about raising Lydia, is that there is always a way. We as a society love to do things in a cookie cutter manner. However, she has taught me how to reach outside of that box and to do things in another way. And if you allow yourself to do that, you too will be blessed in a whole new way.
Please don't take that task away from me because you think it is a burden to me. The truth is, that task allows me to feel like I belong somewhere. That task allows me to look forward to something other than what I do every day. That task allows me to push through the routine of each day to know that I get included in something else.
You don't have to understand the path I am walking, you don't have to know what I am going through. But support me as I say I need to do this, I need to volunteer, I need to be involved. Please don't be scared of what I am going through, please don't think these things are a burden. This is my path and I need this. I have realized her health is not going to change so I must adjust to our situation. Please don't take this away from me.