Systems in Place
It takes a support system to get through a life like ours with Ashley Kate. For Dave and I to pull this off on our own would be impossible. Truly impossible. When Ash is well, stable, and has organs we do our very best to do just that. On our own. She goes with us and we keep the family together for most things. If I need to grocery shop and such I try and do so when he is home and able to sit with Ash. We travel in the RV to the kids ballgames so that she can be with us and we don't expose her to "germy" hotel rooms and such. We take turns sitting with her and watching the games. When the weather is acceptable she LOVES to ride in her chair or her wagon as we walk around and around the fields and watch the older kids play. When she's well life is easier. Its in those times, like now, when she is not well that life becomes difficult to manage unless you have some form of help.
We don't have nursing care in our home. We don't have any forms of respite care. We do most of this life on our own. We like it that way. Raising our kids. Raising our family.
Since ex-plant, Ash gets out of the house very little. I mean, we take her, but she resides in the car or the RV most of the time. She's happy like that as long as the car is moving. On occasion, while wearing a mask, in the less busy times of the day, I have taken her into a few places with me. She enjoys the freedom of being out and about and is excellent at keeping a mask on her face.
The first two months we were home, my mom came to help out. She sat with Ash for us during Allie's entire volleyball season allowing us to enjoy, support, and be there for Allie. Again, she traveled with us on the weekends in the RV and sat with Ash while we enjoyed watching and supporting Blake at his baseball tournaments. We are so committed to being present for the older kids while I am here. Its of the utmost importance to us for me to be present with them.
Before my mom left we made sure we had the upcoming weekends covered.
Sometimes the systems you set in place fail. When that happens life gets a little difficult to manage. This weekend is going to be rough. The system we were depending on fell through and Dave will be out of town working all weekend. I'm not so sure how I'm going to pull off the weekend. Its a little distressing at the moment. Blake and I are going to do our best to figure it all out, but its getting more and more complicated.
Its not easy for us to ask for help. Its not something that comes easily to either of us. We are so very willing to help out anyone at anytime and never think twice about it, but when it comes to us depending on others its not a natural occurrence for us. This is one of the areas that God has been actively working on us with over the course of Ashley's life.
As we try and make plans for the transplant re-evaluation we are stuck with the dilemma of where Blake and Allie will be. They will be out of school and are old enough to stay at home during the day, but I would never leave them over night. Not for one night and especially not for 4 or 5. They both have commitments here in town and are unable to travel to Omaha with us that week. At this point the system we were counting on didn't work out once again and we are left in a huge bind. Its not as if the re-evaluation is something we can keep moving around. Its a pretty important week and we need to try and get it nailed down and over with. I'm just a little stressed trying to come up with a new system today. Your prayers for a clear answer would be greatly appreciated. If something doesn't work out then we will be forced to move around the dates once again. Its a holiday week and its not as if we can call on our friends and ask them to alter their holiday plans to take care of our kids. Any other time of the year I would force myself to do so. Dave could stay behind and keep the older kids, but I think its extremely important to have him there making life and death decisions for our daughter together. I just don't know.
Life is so much easier to navigate through when our 5 year old has functioning organ systems. It truly is! The constant "threat" of having to drop and run at any moment is overwhelming as is the knowledge of leaving two kids behind as I care for the other.
Maybe this is not the right time for re-eval? Maybe this is the Father's way of saying, not now, not yet? I don't know. I'm searching trying to get it all worked out. Somehow it will.
I share this post with you not so I can complain but so that you might pray for us to know what direction to go. I thought we had nailed it down, but last night it fell apart. This seemed like the perfect time to go because of the time out of the office for the holidays. Dave would be missing work most of those days anyway. I'm starting to think I was wrong.