Wow, life is busy in this house. Seems as though the weeks are flying by, running all together, and before I know it another one has gone. I find it hard to believe we are in the middle of October already. At the end of volleyball season and at the beginning of basketball season.
So many thoughts, plans, dreams, wishes, and emotions run through my head these days. Usually at night when the kids and Dave are all sleeping. I lie awake and sleep doesn't come to me because all that's right in my world collides with all that is so very wrong and I'm trying desperately to make it all come together.
I stay busy running from this practice to that, watching Blake and Al play in this game or that, and juggling sports equipment, uniforms, and cleats in the back seats of the cars trying to cram them in around cars seats, wheel chairs, pumps and IV supplies. What a contrast! I have two children who can do it all and try to and then my youngest cant do any of it. Talk about emotional! Most days I just cram and adjust and rearrange and ignore the "sting" of it all, but every once in a while it catches me off guard and I wonder what if. What if I had a tiny size 9 pink soccer cleat thrown in the back with a Dora the Explorer soccer ball to go with it? Wow, it makes me smile to imagine what that would feel like.
I find myself at a cross roads as of late. I think its time to make some changes in our home, but the thought of change terrifies me. The idea of it all freezes me and makes me afraid. I have no idea where to start of how to even accomplish it, but I think we have come to the place in Ash's life where we need some outside help. I have done everything possible to keep from having strangers in our home to assist with Ash because I want life to be normal for my family. I have never asked for nursing care, never considered it, and never wanted it, but as I face a very busy fall and winter season ahead I realize there is no way she or I will be able to keep up with the schedule. The older she gets, the more she grows, and the longer those legs of hers become. She is so tall and yet has never stood up on her own. She is so heavy and yet has the most petite features. She is six years old and as much as I hate to say it out loud she is completely dependent on me. Oh, don't misunderstand my words, she is fully independent in many ways. She doesn't need me to entertain her or sit next to her every minute of the day. She plays independently all day every day. What I mean is that she does not walk, or talk, or eat, or dress her self, or get out of bed on her own, or sit her self in a chair, or give herself a drink of water, or use the potty. I once stood outside our car visiting with an acquaintance while Ash sat inside strapped into her car seat. The woman I was talking to very bluntly said, "Do you realize you will be caring for her as if she were an infant for the rest of her life?" OUCH! That was my initial reaction. I had never thought of Ashley Kate like that. NEVER. Not even once. Then I was angry. Almost defiant. Tears sting my eyes even now as I remember those words. She wasn't being mean, she was being observant, but still the pain from hearing her words was raw and still is.
For Ash's entire life the only ones who have ever cared for her are her daddy and myself with the help of our moms coming to sit with Ash while we run here or there with the busyness of the older kids schedules. I don't want to have anyone else do her cares. I feel as though its a private act to change the diaper of a six year old, or one of her ostomy bags. I also feel it is 100% my job as her mom and not anyone elses to do her medical cares. Dressing changes, TPN, g-tube issues, drain bags, etc. My mom has been a great help with Ash while I'm gone, but other than her no one has ever done these things for us. Problem is that my mom doesn't live here. She comes to help out for a couple of months at a time, but she doesn't live here and can't live here. So...I need to figure this all out.
I guess what I'm struggling with is that I think I need a sitter, but not just a sitter. I need a qualified and trained nurse who can sit with Ash while I sit across the street at a volleyball game, or while I travel an hour away to a basketball game. I don't want a nurse to come in and change dressings, or give cares. I just want a nurse to come and sit with Ash, interact with her, and be here if by any chance an issue would arise with her central line, ostomy bag, dressing, drain, or g tube. I don't even know if that is realistic or not. Seriously I don't know how this works 6 years into it. I've heard other families speak of respite care or nursing care, but have no idea how to secure it. Its new territory for me.
At this time I plan on taking Ash with me. She is older now and she does enjoy getting out of the house. She doesn't adjust to new situations very well, and I am anticipating some very embarrassing, difficult struggles, during some activities. I think that is to be expected. I also anticipate that she nor I can physically keep up with taking her to everything that we do each week. It is simply too difficult to transfer her body that many times a week. On her and me. So this fall we will embark into this new place in our lives. Try to figure it all out day by day and enjoy as much of Blake and Allie's teenage years as possible with their little sister in tow.
For those of you who currently have help in your homes with your kiddos if you have any tips, advice or experiences you can pass along I would welcome your emails to help us figure out what is best for our family and assist me in making a decision in this area.
All three of my kids are growing up and I'm determined to be a mom to each one of them to the best of my ability for the time I am given with them.