It’s been a roller coaster lately with our daughter. She just got released from a 10 day stent in Levine Children’s hospital where they attempted to try to find a cause for her episodes she’s been having. They determined they are not seizures, but we really don’t know what they are. They called them “environmental” because she only had one episode while at the hospital. We aren’t sure why that is. But every doctor we talk to seems to think that maybe this will improve when she moves to a new residential setting. We are hopeful that is the case.
Back in September we applied for and were granted emergency money in the form of a Medicaid waiver called Innovations Waiver. I joking call it the golden ticket for kids with disabilities. It means that the rules about income are waived and she can get medicaid and also get related services such as residential placement, therapies and medical equipment she may need. It’s a huge blessing for us. God has provided and we know He is leading us in this direction. We have decided it would be best for her to be placed into what is called an AFL (Alternative Family Living). It’s a private home of a caregiver who has one other child with a disability and herself in the home. So it will be a much quieter environment than living here with six brothers. She will also get therapy and other things that will hopefully help her. And we will get support in the form of relief from the daily care of her. She is become increasingly difficult to care for over the past year or so. This new caregiver will also take her to all her doctor’s appointments, which are many.
We finally got a move date for her which will be December 24. It seems like a bad date from the outside looking in, but really for her it will be best. She would be stressed out by Christmas and doesn’t really understand it anyway. It’s just about what is best for her, even if it’s difficult for us. The caregiver is wonderful, we have met her in person and have been communicating with her through this process. And she lives close to our house so we can visit often.
So many people have asked me how we are feeling. To be honest we are feeling a lot of things. Sad, angry, happy, relieved, nervous…all of it. It will be a huge relief for our family, us and the boys, because the last few months have been traumatic for us with her behaviors and being in the hospital six times in two months. We are worn out. It will mean more time with the boys since we don’t have to do the millions of doctor’s appointments and hospital visits we have been doing with her. I seriously won’t know what to do with my time. Actually, I will just be catching up for a while on the things I haven’t been doing for the past few months. We are contemplating how to reorder our life after this huge change. We feel God leading us into a time of rest. Kaki came to us exactly six years ago last month and we are going into the seventh year. In the Old Testament God said that every seventh year would be a Sabbath year of rest from planting and harvesting. The fields would be dormant for that year. We are praying about what God has for us as we enter this seventh year and how to best heal from this past year of trauma for our family.
This doesn’t mean we will not still be involved with Kaki, but we hope in a much more relational way. We will get to go do fun things with her and not have to do the hard parts of care giving. We are looking forward to that. It’s weird. It’s not a normal thing at all to have your 17 year old move away from your home, but it’s where we are. We know the next few weeks and months will be different and there is a grieving process even now. We cannot yet see the good things that God will no doubt bring from all this, but we are trusting and keeping our eyes on Him and listening as He leads us. We would love your prayers as we enter this holiday season. It will be difficult and we could use prayer as we walk through it.