Philip had a wonderful week at school. His teacher had a good report each day that he was doing well and enjoying himself obviously. The day is a little bit longer than I previously thought due to bus transportation right now but I think it will level out over the next week or so. The first couple of weeks are always a little crazy as everybody settles into their places. He does seem a little tired when he gets home but that helps him to sleep well each night. I feel complete peace about this decision. I think it is best for him and the rest of the family.
We raised his Vimpat dosage again on Monday. Each increase brings a little more expression and interactivity out of him. I am excited for him. I think that was also a reason he could show he enjoyed school so much this week. Due to a miscommunication from the nurse and another doctor about his dosage, he had a larger dose on Tuesday morning but handled it well actually. His teacher said he made their day because he was laughing, smiling, and so expressive with arms and legs. He was even saying, “Yeah,” to his teacher. We may indeed work up to that dosage but we will do it slowly over a few weeks.
The process of making adaptations for his wheelchair or getting a new wheelchair began on Monday. The therapists that met with us were both ready to make inquiries and do research to see what would be best for his needs. Please pray that process would go smoothly and quickly. I can tell as I take him from his chair each day after school that he needs something more supportive for the long school days. His teacher does get him out to let him stretch and lie on his side but he is in the chair mostly.
We’re continuing to enjoy less congestion. I will have to take him off Zyrtec soon for a week or so to help him be ready for the fall allergy season. Zyrtec works best but it does become ineffective. I’m trying to plan ahead so that he won’t lose its benefits in the middle of allergy season.
We haven’t heard back yet about the testing for lead and asbestos in the bathroom. We expected to hear this week but all we can do is wait.
Speaking of waiting, it was clear this week that the Lord wanted us to wait to make any changes for Joyanna. I told several people last week, that we just didn’t have any clear direction for changes for her. Of course, when that happens, the only thing to do is wait. We thought we would talk with the doctor on Monday and she would have recommendations. On Monday, when I called to discuss the medications with her, I found out she was out of town for the week. In my heart, I knew the Lord was again clearly saying, “Wait.” We may never know the reason. He surely has a plan for everything. The doctor actually called me yesterday and we discussed the options for medication changes. Whenever those changes are going to occur, Ben and I discuss them together and usually, we have arrived at the same decision about the change. (When we don’t, the Lord has shown me it is best (and biblical) to go with Ben’s decision.) I am planning to call the doctor back on Monday and we will make the changes. Right now, we think we will raise an existing medication she is on and has responded well to in the past. Please continue to pray for direction in that way.
We scheduled the surgery to place her G-tube for August 25. I think she is doing okay with maintaining right now. She is surely not drinking enough but the Lord is taking care of the rest. I have to trust Him for that or I get too fixated on it, worrying and making her and me miserable. Sometime last year, I remember writing how I would tell myself audibly, “That’s God’s,” when I came to something I could not change. That still serves a purpose from time to time.
I’ve done a lot of thinking this week about the mental processing of our journey in its daily form. For anybody who has a special needs child, there are grieving processes. When you first understand the situation, you grieve because your expectations and dreams die. Everyone goes into the experience of having a child expecting everything to be “normal.” When you learn differently, there is a natural grieving process. You must process through what will never happen—weddings, maybe graduations, etc. You must process through what will happen—caring for a child into old age, navigating medical care (which you can’t even fully understand at the outset). Then with disorders such as our children have, you actually grieve their death when you learn it will happen. But then, from day to day, when you see abilities regress, you grieve those small “deaths” as well. Every addition of equipment for Philip means something in his body is not working properly. In the stage where Joyanna is, there are things daily that she can no longer do. I think at the core, that is why the days are harder right now. When I see that she can’t do yet another thing, I must grieve but as quickly as I process it, I must move on. The other side of the mental process from grieving is adapting myself to compensate for her lack of ability. For example, she must be fed many meals now. If our current situation demands that she feed herself, then I must fix something that she can handle alone. Joyanna reacts at times right now with defiance or belligerence to many requests. I must guard my own spirit and not react to these attitudes with anger or harshness. (very, very hard…my natural tendency is to react.) I have been begging the Lord to grow me in the area of control of responses. He is working but it is a slow process. Add the obvious physical and emotional demands and you have a war on the whole being…mental, spiritual, emotional and physical. When I write that out, I get exhausted just thinking about it but then my next response is, “That is why we must have God’s strength, His grace, His peace, His guidance.” We must be near our Father to navigate the path He has ordained for us. And really, though you may not face what we are facing, you face something that challenges you mentally, emotionally, physically, and spiritually. You must stay near to God; you must listen closely to the Spirit. We would ask that you pray for that closeness to God for us and we pray the same for you. If you don’t know Jesus personally, you won’t be able to navigate life without guilt and a continual sense of emptiness. Please accept the gift He gives you of salvation and so much more.
We hope you enjoy the "dog days" of August, maybe mostly remembering that they will not last long. Before you know it, there will be a coolness in the air.