Tuesday, July 30, 2013

Take a deep breath!



I really struggled mentally this weekend. Can I do all of this? Am I strong enough for this? Would someone do this better then I am? Do I try enough? Do I give her enough? With all of her appointments and therapists she is a full time job... but I have a full time job. I am loving this time off with her recovering. I have seen her grow so much developmentally. But we have to pay for everything that goes with Jillian and that means that unless Brent get a huge pay raise, I need to work to make ends meet. I know she gets benefits from being with other kids at daycare.  I never thought I would feel so strongly about wanting to stay home. Maybe because Jillian has taught me a little bit how of precious life is and how quickly life can change. Sometimes it is kinda humbling to look at everything in the past year of our lives and think that to some people it is a lot, to others it is less then they are going through and to us it is ours! Even with the mentality that this is the life we have right now, I still wonder if I am cut out for it. Maybe I'm being humbled. I would not trade Jillian for anything or all of her "stuff" but sometimes I wonder if I can do it. 
I know she love me so much. I love that when I walk into the room she lights up! She has also started with separation anxiety and  stranger danger. Sometimes it is annoying when I can't walk out of the room with out her crying but at the same time there is a little part of me that smiles because that means she has formed a secure attachment to me. She knows I'm hers. She loves me. I am comfort to her. Wow! That is really humbling. That makes me want to be the best mom possible. What sacrifices can I make to be the best mom?
Sometimes you have to let life just play out. I guess that is what I need to do. I guess it is normal to want what is best and do what you can to provide the best thing for your child. Knowing and doing what is best is hard. I just love her so much! I have to admit though sometimes when she has all of the wires and things hooked up to her I find myself pulling away from her to try to protect myself, but then she reminds me how awesome she is and I dive back in wholeheartedly. She makes me smile every day. Even when she is laying in a hospital bed. She is such a ham and a fighter and I will fight for her! 
Right now a  big fight I feel like we are taking is understanding by others. Right now I am working on just letting go of what people think. Sadly it's not strangers that is the battle. It is people that are tied into our lives. I am so sick of hearing that Jillian wants "real" food. That she would be happy if I just let her have it. Other then feeling overwhelmed sometimes I don't think I'm a bad mom. I think I am doing what I know best for Jillian. If I have to sit through one more meal out hearing how Jillian just wants to eat I think I might blow. I have educated on why she does not eat. I have tried to ignore, and I am trying to not let myself get to the point of yelling. We don't deprive Jillian of "real" food, we are saving her from it right now because it is not what is best for her. Maybe that will be my tag line for right now.
I know I am rambling! I am just such a write it out person. Just ask Brent, I would rather write something then ever say it... I'm horrible at spelling though... funny! Someday I will look back at all of this and see the person that I came from. See the work. I have been really challenged this week because I am not a fan of cleaning incisions, thats what I did not become a nurse. Brent is good at that stuff, but he has been really busy so I have needed to clean it this week. I am kinda proud of myself. Her incision is clean and is looking good. I have over come it. I have done it. I made it work. I needed some help and encouragement but she is cared for. I did what was best for her. 
So now I go and get more cleaned up around the house and act like a goof while doing it because that makes Jillian happy and I will do a lot of things for her smile :)

1 comment:

  1. Oh Amanda, my heart hears you. Raising a child with such complex special needs means no well-meaning person will ever fully understand how many intricate choices you've had to make. They will offer up ideas or opinions without having done all the research required to know why you came to this decision. They won't have held your daughter for countless hours, feeling the agony she goes through. They don't live each day seeing the things that cause her pain, vs. the things that cause her relief and joy. And only those who've walked a similar road will understand how impossibly hard the financial choices become. Your passion for your daughter, your reliance on God, and your bond with your loving family radiate from you. May God grant you daily, ever-increasing peace from the unwitting pain of the opinions or pressures you might feel from those around you and give continuing wisdom as you walk this difficult path. And may He richly provide so that you are able to spend as much time and love on that little girl as possible. We continue to pray for your family.

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