Please Share
In support of
Sadie Long
View Support Page
Sadie Long
Friends,
I have to admit that this is a difficult update for me to write personally. I will start with Sadie is doing well, she's adjusting back home beautifully. There's just something about being home after months in the hospital that feels like a hug. We have slowly gotten back into some small routines from before. It's been a huge adjustment and every day is learning something new about her and how much she can tolerate and where her new limits are. Thankfully she's been trending positive in her endurance and ability to tolerate weather and fresh air- I know that sounds kind of silly but just being outside is an adventure for her now. She is due for another clinic visit soon and our prayers are that she'll continue to do well and her next heart cath will go smoothly.
Adjusting is difficult- perhaps more so for me than Sadie lately, which I am incredibly grateful for. Every day we wake up at home is another gift and I don't take it lightly. I have been working with Sadie's transplant team to try to qualify for different aid programs. I'm homeschooling Sadie to keep her safe, and in an environment she can thrive in- and she is thriving in it- but sustainability is a bit of a problem for me.
I'm a single mother- it's just me and the girls now. I had to leave the job I had back in April to stay with Sadie and get through the transplant process. Her team states "As a pediatric heart transplant recipient Sadie requires ongoing immunosuppressive therapy and close medical monitoring. Her immunocompromised state places her at increased risk for serious infection and complication making appropriate care and minimizing exposure to infectious environments paramount." Which translates to: You have to be careful with her. She needs a protective environment where she's kept at low risk for things most of us do every single day. I can provide that for her right now- but I will hit a wall with funding and wont be able to provide this environment forever in current conditions.
I can not lease where we are and afford everyday life on a single stream of child support income, which is what the girls father is willing to contribute. I have applied for every single stay at home job that I've come across and hear nothing back. I'm trying to figure out how to juggle a full time schedule of work with a full time care taker schedule- I know there are many other women that have done more with less so I'm not giving up. I can not qualify for disability for Sadie with any type of savings in place- so I have to be at the very end of the rope already drowning before she can even begin to qualify for it. Sadie's medical team has deemed her high risk and qualifying for home health, meaning they agree that she shouldn't be in the school system and high risk environments and needs to be monitored at home. They also state that they support the Florida Home Health Initiative that allows parents to be paid to be home care takers- however, insurance has denied that. They state that while doctors can recommend their expertise for the program that insurance deems a patient fit or not for the program and because Sadie doesn't have any wires coming out of her and isn't "sick enough" to demand "skilled" nurse care- even though the doctors have recommended it- they do not agree. So it's been denied.
My hands are tied. I'm still raising them up. I am grateful that she's alive. I'm grateful that we're together. I know that there's a path forward. I just don't see it yet.
So I'm asking you to share our story. Please. I believe in community and I believe in a village mentality. It pains me to be the one having to consistently ask for help in this season- but in a world where not enough people ask for the help they need- I wont just drown in it without trying.
If you know of anyone that needs someone to work from home, please let me know. If you could share our story I would be incredibly grateful. If you see the path forward that I don't- please reach out. I'm not afraid of hard work, I am afraid of not knowing how I'm going to keep my children safe and cared for healthily for a sustainable amount of time.
I have to admit that this is a difficult update for me to write personally. I will start with Sadie is doing well, she's adjusting back home beautifully. There's just something about being home after months in the hospital that feels like a hug. We have slowly gotten back into some small routines from before. It's been a huge adjustment and every day is learning something new about her and how much she can tolerate and where her new limits are. Thankfully she's been trending positive in her endurance and ability to tolerate weather and fresh air- I know that sounds kind of silly but just being outside is an adventure for her now. She is due for another clinic visit soon and our prayers are that she'll continue to do well and her next heart cath will go smoothly.
Adjusting is difficult- perhaps more so for me than Sadie lately, which I am incredibly grateful for. Every day we wake up at home is another gift and I don't take it lightly. I have been working with Sadie's transplant team to try to qualify for different aid programs. I'm homeschooling Sadie to keep her safe, and in an environment she can thrive in- and she is thriving in it- but sustainability is a bit of a problem for me.
I'm a single mother- it's just me and the girls now. I had to leave the job I had back in April to stay with Sadie and get through the transplant process. Her team states "As a pediatric heart transplant recipient Sadie requires ongoing immunosuppressive therapy and close medical monitoring. Her immunocompromised state places her at increased risk for serious infection and complication making appropriate care and minimizing exposure to infectious environments paramount." Which translates to: You have to be careful with her. She needs a protective environment where she's kept at low risk for things most of us do every single day. I can provide that for her right now- but I will hit a wall with funding and wont be able to provide this environment forever in current conditions.
I can not lease where we are and afford everyday life on a single stream of child support income, which is what the girls father is willing to contribute. I have applied for every single stay at home job that I've come across and hear nothing back. I'm trying to figure out how to juggle a full time schedule of work with a full time care taker schedule- I know there are many other women that have done more with less so I'm not giving up. I can not qualify for disability for Sadie with any type of savings in place- so I have to be at the very end of the rope already drowning before she can even begin to qualify for it. Sadie's medical team has deemed her high risk and qualifying for home health, meaning they agree that she shouldn't be in the school system and high risk environments and needs to be monitored at home. They also state that they support the Florida Home Health Initiative that allows parents to be paid to be home care takers- however, insurance has denied that. They state that while doctors can recommend their expertise for the program that insurance deems a patient fit or not for the program and because Sadie doesn't have any wires coming out of her and isn't "sick enough" to demand "skilled" nurse care- even though the doctors have recommended it- they do not agree. So it's been denied.
My hands are tied. I'm still raising them up. I am grateful that she's alive. I'm grateful that we're together. I know that there's a path forward. I just don't see it yet.
So I'm asking you to share our story. Please. I believe in community and I believe in a village mentality. It pains me to be the one having to consistently ask for help in this season- but in a world where not enough people ask for the help they need- I wont just drown in it without trying.
If you know of anyone that needs someone to work from home, please let me know. If you could share our story I would be incredibly grateful. If you see the path forward that I don't- please reach out. I'm not afraid of hard work, I am afraid of not knowing how I'm going to keep my children safe and cared for healthily for a sustainable amount of time.
Comments