I think I have done a lot of putting on a good face lately. Mostly because I feel like so many people think we are crazy for fostering again, especially with H still being so needy, and especially with all the (ever increasing!) needs D has. I don’t want to hear “I told you so” from anyone (not that we asked anyone!) So even though I’ve been feeling increasingly overwhelmed and have had many times where I’ve thought “but that’s not how I thought this would go!”, I have been acting to others like everything is just fine. I just don’t want to hear “I don’t know how you do it!” anymore.
So, here is how things *really* are… So, just like any other child we’ve fostered, the things we thought would be tough about D turn out not to be that bad. Feeding him through a tube to his tummy? Actually, honestly, easier than bottles! I’ve even done it on the go a couple of times. Giving him IV meds? A serious thing, but not difficult. Taking care of him? A delight! What a fun kid! Bringing him along to church or to and from school? He really enjoys getting out, and I’m so proud to be with him!
BUT, there’s the nursing help. We were offered and encouraged to take a lot of nursing help. Basically we have a nurse in every weekday now. And we’ve had ok, good, and great nurses, too. I was happy to figure out I CAN do it by myself. But the thing is, it’s not D’s day to day care that takes time, it’s being his social secretary! In the month of March he currently has 4 appointments at the city hospital. Two therapists will come each week to the house, along with 3 social work visits. Plus the phone time spent making sure he has all the meds he needs when he needs them, and that we get a nurse out on the right day to get the right services.
Back to the nursing… I’m just having a hard time getting used to having someone else in my house all the time. Especially because I’m here most of the time. And we want D involved in the family and with us as much as possible, but it’s much easier and comfortable for the nurses just to keep him by his crib. Which happens to be in my room. So the whole idea where I get to nap after being up all night at the hospital? I’m stuck napping on Hassani’s bed. It works, but it’s not like hanging out on my bed. So I’m still working the kinks out of this whole nursing thing. I definitely need the help to be able to be a mother to everyone, but I have to work it out in such a way that it’s easier for me, too.
Another thing we didn’t see coming… hospitalizations! We knew he got sick easily, but I hadn’t realized how easily he’d end up hospitalized for a few days! Just last weekend he was in from Thursday afternoon to Saturday. T & I had a real heart to heart. As incredibly sad as it makes me, we have admitted that if he’s hospitalized on a weekday, we just won’t be able to stay with him around the clock. It breaks my heart to think of him alone there, but Z, H, & G, and even J need their parents!
AND now the doctor wants to increase his overnight IV meds from 10 hours to 20 hours. The other doctors on the team have all told me, away from their superior doctor that they think 20 hours is too much and I need to speak up and let him know we can’t do it. And I did try. I really was my assertive best trying to figure out a compromise or alternative that will be just as good for D. And in the end… he just INSISTS that D needs 20 hours. And my only objection is that I don't want so many nurses in the house. The doctor thinks I'm crazy not wanting the help.
Right now (today) we’ve increased to 15 hours (4pm – 7am). We picked these hours to make it possible for us to do it without nursing help. But going up to 20 hours (probably 11am- 7am the next day) will mean that we can’t D out of the house during those hours, and we have to have a nurse here to take care of him. So we’ll be having a nurse every day but Sunday, I guess. If they can find a nurse or nurses to do it. I just have to figure out what hours I want the help, and then figure out how things work best for the family.
But, despite all the negative I’ve just vented, we are so in love with him. He is the sweetest kid ever! I’m so excited to work with his physical and early childhood therapists to see what kind of stuff he can do. I love his smiles, and I do feel like God put him with us because there are so few families that could really handle him.
And I’ve also realized that, in a lot of ways, he’s actually easier to handle than a “typical” young foster child. He can’t even move/crawl/walk right now, so he’s not getting into anyone’s stuff. There are no negative behaviors or cuss words he can teach the kids. And they are learning plenty about being kind and compassionate, even without our encouragement! Z, H, and G are concerned that D will not be able to eat cake (nothing by mouth) for his birthday. “Don’t they make frosting to go in that tube?” :) We will have to figure out something very special.
So I guess what I’m saying is that it’s totally worth it! Mostly the thing that bothers me is that I had pictured being able to take him with me on our family outings, being part of our family! But now that might not be possible, and that makes me so sad. I really miss that vision of what I thought our family would be like. So tonight, we're going out to eat and shopping while D is home with a nurse. What about when we go to Camp Luther, or camping in Wisconsin, or any other trip? Can we bring him along? Do we have to leave him behind? And WHO can care for him if we can’t??? These are the things that are most overwhelming! It’s just hard to explain that his smile makes it all worthwhile!
So, here is how things *really* are… So, just like any other child we’ve fostered, the things we thought would be tough about D turn out not to be that bad. Feeding him through a tube to his tummy? Actually, honestly, easier than bottles! I’ve even done it on the go a couple of times. Giving him IV meds? A serious thing, but not difficult. Taking care of him? A delight! What a fun kid! Bringing him along to church or to and from school? He really enjoys getting out, and I’m so proud to be with him!
BUT, there’s the nursing help. We were offered and encouraged to take a lot of nursing help. Basically we have a nurse in every weekday now. And we’ve had ok, good, and great nurses, too. I was happy to figure out I CAN do it by myself. But the thing is, it’s not D’s day to day care that takes time, it’s being his social secretary! In the month of March he currently has 4 appointments at the city hospital. Two therapists will come each week to the house, along with 3 social work visits. Plus the phone time spent making sure he has all the meds he needs when he needs them, and that we get a nurse out on the right day to get the right services.
Back to the nursing… I’m just having a hard time getting used to having someone else in my house all the time. Especially because I’m here most of the time. And we want D involved in the family and with us as much as possible, but it’s much easier and comfortable for the nurses just to keep him by his crib. Which happens to be in my room. So the whole idea where I get to nap after being up all night at the hospital? I’m stuck napping on Hassani’s bed. It works, but it’s not like hanging out on my bed. So I’m still working the kinks out of this whole nursing thing. I definitely need the help to be able to be a mother to everyone, but I have to work it out in such a way that it’s easier for me, too.
Another thing we didn’t see coming… hospitalizations! We knew he got sick easily, but I hadn’t realized how easily he’d end up hospitalized for a few days! Just last weekend he was in from Thursday afternoon to Saturday. T & I had a real heart to heart. As incredibly sad as it makes me, we have admitted that if he’s hospitalized on a weekday, we just won’t be able to stay with him around the clock. It breaks my heart to think of him alone there, but Z, H, & G, and even J need their parents!
AND now the doctor wants to increase his overnight IV meds from 10 hours to 20 hours. The other doctors on the team have all told me, away from their superior doctor that they think 20 hours is too much and I need to speak up and let him know we can’t do it. And I did try. I really was my assertive best trying to figure out a compromise or alternative that will be just as good for D. And in the end… he just INSISTS that D needs 20 hours. And my only objection is that I don't want so many nurses in the house. The doctor thinks I'm crazy not wanting the help.
Right now (today) we’ve increased to 15 hours (4pm – 7am). We picked these hours to make it possible for us to do it without nursing help. But going up to 20 hours (probably 11am- 7am the next day) will mean that we can’t D out of the house during those hours, and we have to have a nurse here to take care of him. So we’ll be having a nurse every day but Sunday, I guess. If they can find a nurse or nurses to do it. I just have to figure out what hours I want the help, and then figure out how things work best for the family.
But, despite all the negative I’ve just vented, we are so in love with him. He is the sweetest kid ever! I’m so excited to work with his physical and early childhood therapists to see what kind of stuff he can do. I love his smiles, and I do feel like God put him with us because there are so few families that could really handle him.
And I’ve also realized that, in a lot of ways, he’s actually easier to handle than a “typical” young foster child. He can’t even move/crawl/walk right now, so he’s not getting into anyone’s stuff. There are no negative behaviors or cuss words he can teach the kids. And they are learning plenty about being kind and compassionate, even without our encouragement! Z, H, and G are concerned that D will not be able to eat cake (nothing by mouth) for his birthday. “Don’t they make frosting to go in that tube?” :) We will have to figure out something very special.
So I guess what I’m saying is that it’s totally worth it! Mostly the thing that bothers me is that I had pictured being able to take him with me on our family outings, being part of our family! But now that might not be possible, and that makes me so sad. I really miss that vision of what I thought our family would be like. So tonight, we're going out to eat and shopping while D is home with a nurse. What about when we go to Camp Luther, or camping in Wisconsin, or any other trip? Can we bring him along? Do we have to leave him behind? And WHO can care for him if we can’t??? These are the things that are most overwhelming! It’s just hard to explain that his smile makes it all worthwhile!
3 comments:
Thanks for telling the truth. Good for you!
A couple of thoughts:
1) The nurse is there to make things easier for you, you are not there to make things easier for the nurse. If you need time to yourself in your own bed, then put up a pack-n-play in another room where the nurse can be. It's vital that you have alone time to rejuvinate. Having other people in your house can be really draining!
2)Does D change medications alot, or does he pretty much take the same thing? I spent a few weeks ordering 1/2 orders of meds, etc so that I could get all of mom's meds renewing at the same time. If you could get on a schedule where you just have to pick things up a couple times a month, that would help. Also, is there a pharmacy that will remind you or automatically refill prescriptions? And use one that has free delivery (our Dillons does).
3)D is your foster child. If you want him to be a part of your family instead of in his crib (and it's not detrimental to him), then make your wishes clear. My guess is once a nurse sees the interaction between D any the rest of his family, she'll see the value of it and be more willing to find ways to make it work.
4) If you need a night nurse, move the crib OUT of your bedroom.
5) Does D have an Advocate? What does this person think about moving his meds to 20 hours? Is it worth it to change doctors? How does quality of life factor into these decisions?
6) I'd talk to the foster agency about your travel concerns. Instead of worrying, find out the answers (or even a set of possibilities).
7) KNOW that you are surrounded in prayer. Know that you are doing this because God has gifted you to do this. Know God is overwhelmingly grateful for what you are doing. Know that no matter what you do, God loves you more than you'll ever know.
TAG!
You've just been tagged to list 7 Random Things about yourself on your blog, then you get to tag 5 other people to do the same. ;)
Thank you Helen! Thank you, thank you!!!
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