Trust in the Lord with all your heart and lean not on your own understanding – Proverbs 3:5
Sometimes this is really easy for me and other times I have to keep repeating this verse over and over to myself. This is one of those times that I have to keep reminding myself that God is in control. Finances are very tough this month. I have been a stay at home mom since I found out I was pregnant with Melanie. When Melanie was diagnosed with CF a friend told us to apply for SSI. I didn’t think we would get it but we did. So when Rosie was diagnosed with CF we applied for her as well. It was a blessing to us that has allowed me to stay home and take care of the kids. After Melanie died her SSI stopped (and rightly so). A lot of people sent money to help us cover expenses right after she died and we are so thankful for those gifts. We were almost able to make it to my husbands next raise in July when we will be ok again. That’s one of the good things about the union – good raises. On the down side, we had some bad weather last month and RD was on an outside project. Electricity and lightening and rain don’t mix well. So when the job site is shut down, he is sent home without pay. We have been selling things on craigslist and facebook yard sale sites and recycling scrap metal to make ends meet. Then Rosie went into the hospital, so we had added expenses there. And now we have to take her to St Louis on June 16. We do have funds raised to cover the expenses but we get reimbursed. So we have to have the money up front.So I’m kind of freaking out. I try to figure it all out on paper and then I just get myself more worked up. Then I remind myself that God knows our needs and I need to trust Him. He has always provided for us in past and He will show us a way again this time. Trust in the Lord with all your heart and lean not on your own understanding.
As if that was not enough, I have been struggling with what St Louis is telling us about Rosie and transplant. When we were there in April they told us it was time to list her for transplant. We had to take care of some vaccines before she could be listed. The live vaccines are the ones that keep her from being listed. She has gotten both live vaccines. The last one was done on May 20th. We wait 30 days and then she can be listed. So we figured we would be relocating mid June so she could get listed as soon as the 30 days was up. Makes sense to me. However, we have been told twice by the transplant coordinator and once by the social worker that if there are too many patients at St Louis waiting for lungs they will not list Rosie. Their reasoning behind this is they don’t want to create competition between patients. For patients over 12 the sickest person is considered first (they use a scoring system called LAS to determine how sick the patient is.) If they are not a match then they go down the list until a match is found. So I don’t really understand why they would tell us now is the time to get listed but then tell us they might not list her now because they don’t want too many people on the list. So that brings us to the possibility of looking at other centers. St Louis is a great center and it’s the closest to home, but if they will not list her now when she is strong enough to survive the surgery we need to find somewhere that will list her now. Both Pittsburgh and Philadelphia Children’s do double lung transplants and Philadelphia does not require the patient to relocate, but we would have to travel there once a month. That would actually allow her to be listed at more then once center if we want to do that. But that brings us back to having the money up front to travel to Philly or Pittsburgh. Which brings me back to reminding myself to Trust in the Lord with all my heart and lean not on my own understanding. I am so sensitive to waiting too long with Rosie because that is what happened to Melanie. She was doing ok and we waited until she was old enough to go to Methodist so she could live at home. In the end she was too sick to survive the surgery and didn’t get a chance to get a transplant. I don’t want to make the same mistake with Rosie. I want her listed now so she can survive the surgery and have a chance to live a life with healthy lungs. A life where she can breathe and sing and dance and swim and be the lead in a musical.Some days I beg God to allow that to be the plan for Rosie’s life. I don’t understand why it wasn’t for Melanie but then I remind myself Trust in the Lord with all my heart and lean not on my own understanding. Some days it’s easy and some days it’s very hard.