I was talking with Patti the other day about the ‘costs’ of dealing with a child with cancer. The medical protocol is a well tuned machine at this point, but the schedule for visits, drug administration, tests, etc. has the hours of a full time job. We can see how a family could loose everything, or have to sell a house, or something to get through this, because you can’t go back to “normal”.
In our situation, there are some things that we are finding hard to balance. 1) we have a daughter who is fighting cancer (and winning). 2) we have a new-born son who requires a lot of holding and feeding and usual new-born stuff. 3) we have a 2 year old that is very busy and wants to touch and climb and jump and run and search for gum, not to mention spitting, throwing food, peeing his pants, dumping makeup on the floor, and he also has an egg and dairy allergy that keeps us on our toes. 4) we have work to fit in there somewhere. 5) oh yea, there are two other kids, one that has AD/HD, and one that has well developed adult emotions.
Patti is a very organized and capable person… she could do any combination of 1+2, 1+3, or 2+3, but 1+2+3 is too much. I could do the work thing, or carry the load of the one that patti cant carry, but both is really hard. We are trying to find balance and we have very understanding work situations and supportive family and it is still almost more than we can carry.
Today serves to show what I mean. I have a daughter that needs new glasses and needs a visit to the optometrist that we really trust in abbotsford, but he only works a few days a month here and we booked a visit… but had to move the visit because of a conflict with an appointment for Angelica. I’m not usually the one that would organize this stuff, but we are all giving-and-taking. the appointment got moved to Thursday and i made sure to take the last appointment slot at 6:00 so I could make it and I JUST made it after driving ALL day.
The receptionist looks at me blankly and says “I don’t have your kids booked today”. ???
It seems that NEXT Thursday they are booked and that detail was overlooked in the conversation between Angelica’s doctors and me taking the call from the optometrist’s office and trying to remember all the details for everything until I could write it down…
I sigh and realize that I will have to do this trip again next week and that… I have one too many things to juggle.
Jon
hi jon and patti
praying for you and that god will give you strength and wisdom.
praying that god will bring the right persons to come along and help out.
i feel that my prayers is not enough that i could do more. but i dont know how to help out in the physical realm like babysitting cleaning etc for you.
love debra
Maybe your dad or I could take Xan to the eye appointment. We love you and it is OK to ask for help.
I was also given a stick this week that says…. “I can do all things through Christ” my verse… seemed appropriate to mention.
While i was away this summer & praying for you all, i felt the Lord remind me to tell you that there is tax credit for children with disabilities [before i read this post]. I think you have to get note from doctor & then apply to Rev Cda for disability credit for a dependent child. (Soooo, keep gas receipts (there is a mielage stipulation:you have to be so far from your home, to go for medical treatment, so check it out), Ron Mcdonald house/hotel receipts, prescription receipts,hospital meal receipts, hospital parking receipts,etc). We lived 3 hrs from child medical specialists & had to travel once a month (& had to stay over for a few nights during extended stays). We didn’t know this was available & paid thousands over the years, with no tax credit refunded/credited to us. I asked my spouse to check with a chartered accountant but it didn’t happen so we missed out, but God provided on one income & we never went without food, clothing or shelter. PTL! (C.A.’s ones familiar with disability tax credits will know yearly updates/changes, to increase the amts you can claim). Or, FIRST get in touch with Rev Cda by phone. We continue to pray for His healing touch on all of you. Trust this helps you find encouraging info for your situation, Jon & Patti. God is FAITHFUL. Jehovah Jireh “He sees & He provides”. Shalom, yvonne