Laura arrived home last night (Wednesday) from the hospital looking like she had just been run over by a truck. She looked whipped. She looked beat. She looked exhausted. Turns out that she had a hard conversation while at the hospital with the social worker and nurse. They began prepping Laura for the future. This is, in a nutshell, what they said:
Ira is sick and could possibly be sick for a long time. There is only so much we can do here at the hospital for Ira. You have two choices: 1) Send Ira to a rehab hospital where he can get more services on a daily basis. 2) Take Ira home and care for him there with the help of home health care.
Sounds good, huh? The rehabs are reputable. We've been reading through their literature and they seem confident in their abilities to care for someone like Ira. Having Ira at home would be nice as we've been waiting for that day for months now. We feel confident that we could care for him with the help of home health care.
But here are the problems with the above choices: 1) The two reputable rehabs are nowhere near us. One is in New Jersey and the other in Valhalla, NY. If we thought our commute was bad now... 2) Our 800 square foot apartment all of the sudden became smaller. With Ira, all his equipment and a nurse our space is suddenly compromised. And they said that Ira would not be at all ready to go out, that he would be bound to the apartment, which in turn, binds us to the apartment.
I'm aware that there are families that care for chronically ill children and have accepted their plight without fuss. I'm aware that by saying our 800 square foot apartment is not big enough is something only a rich American could/would say. So for some of you, the problems expressed above may not seem like problems at all but for us, this is what we feel at the moment.
Any thoughts?
Ira is sick and could possibly be sick for a long time. There is only so much we can do here at the hospital for Ira. You have two choices: 1) Send Ira to a rehab hospital where he can get more services on a daily basis. 2) Take Ira home and care for him there with the help of home health care.
Sounds good, huh? The rehabs are reputable. We've been reading through their literature and they seem confident in their abilities to care for someone like Ira. Having Ira at home would be nice as we've been waiting for that day for months now. We feel confident that we could care for him with the help of home health care.
But here are the problems with the above choices: 1) The two reputable rehabs are nowhere near us. One is in New Jersey and the other in Valhalla, NY. If we thought our commute was bad now... 2) Our 800 square foot apartment all of the sudden became smaller. With Ira, all his equipment and a nurse our space is suddenly compromised. And they said that Ira would not be at all ready to go out, that he would be bound to the apartment, which in turn, binds us to the apartment.
I'm aware that there are families that care for chronically ill children and have accepted their plight without fuss. I'm aware that by saying our 800 square foot apartment is not big enough is something only a rich American could/would say. So for some of you, the problems expressed above may not seem like problems at all but for us, this is what we feel at the moment.
Any thoughts?
posted by jch at
5:14 PM
10 Comments:
You absolutely have the right to complain and wonder. I learned a valuable lesson (it took me a while actually) from my husband when our second son was born just weeks before Ira and Noah. I learned that just because I knew of other situations that were worse, my situation is all I knew truly. So a colicky baby with laryngomalcia and severe stomach problems and myself having post c-section complications, were reasons to be upset. I felt such guilt knowing all that you and others had and were going through and it made it hard for me to know what was "appropriate" to feel. Anyway, I guess I say all that to say, your situation is what it is and should not be compared to others. I am trying to learn to keep my eyes on my path and not compare to others in all areas, kids/family, spiritual walk, etc. (Take what you want, throw away the rest, as with any advice. :-) )
My situation has gotten so much better as Jack approaches four months and I pray every day that yours will to. I wish I had a suggestion of what was best. I am sorry I don't. All I know is that I can pray for the right decision and even for an answer that hasn't even been presented as an answer yet that will be perfect for your family.
May God give you strength and wisdom.
In Christ,
lisa c
hey joe,
let me just echo my wife. you feel what you feel... that's why they're called feelings. i'm sorry that we feel the need to justify ourselves all the time. it's a real burden. this is the first i've written... let me just say i appreciate your honesty. a rare trait.
rock out,
rob c.
ps i still remember your sermon involving your family's bizarre treading water/arms held high challenge. still makes me smile.
Joe,
I'm praying for you and Laura as you start having to make decisions that will affect YOUR family and your lives, and not so much by the medical personnel there. Based on what you've posted before, you have been so blessed to have some of the best doctors and medical attendants to help Ira through these first couple of months; continue to listen to them. But ultimately, you and Laura must decide and after gathering all the information, and submitting your petitions to the Father, you will know what's best when it's time to make that call.
Tell your Mom (my "favorite" sister as she likes to be called) that she sure looked good holding that precious bundle of joy for over 2 hours straight!
God, give Joe and Laura the strength and wisdom that comes only from you. Help them work through all the questions and issues, and grant them peace with whatever decision they reach. Hold them in your loving arms and continue to surround them with family and friends who love them so much. Amen.
SL
"I'm aware that there are families that care for chronically ill children and have accepted their plight without fuss."
Joe, I don't think this is true. NO ONE has an easy time with a chronically ill child. Also, 800 square feet is a small space. That fact doesn't change just because a lot of the world lives in tighter quarters than we do. You should do yourself a favor and silence these voices - the ones that tell you that what you are going through isn't that bad; that if you were a stronger person (or a more faithful person, or whatever) you would be doing fine. Your situation is bad, no matter how you slice it. Give yourself the grace to call suffering what it is.
Joe,
I have been very close to where you are. No one can really say they have been "where you are", because no situation is exactly the same. But Ethan and I had to think of similar things. The day before Noah died we were waiting for a bed to open and he was being moved down to the level II nursery. Then we would start preparing to bring him home. And it wasn't bringing home a healthy baby, it was bringing home a baby who did not open his eyes, did not swallow, could not eat without a tube. I questioned what would MY life be like. How would I go to the store, still have fun with Alyssa... and so on. The feelings you have are real, and I understand them. And I think you saying them out loud is more than I ever did.
It may be overused but it is so true that God does not give you more than you can handle. I often wonder if that is why he took Noah. Maybe I wasn't cut out to "handle" the life with a child like Noah. But you and Laura, maybe you are. And there will be struggles every step of the way, but wouldn't it be great to see Ira's face everyday right there in your home.
GOD, HEAL BABY IRA.
Yes! You should listen to Anonymous: "You should do yourself a favor and silence these voices - the ones that tell you that what you are going through isn't that bad; that if you were a stronger person (or a more faithful person, or whatever) you would be doing fine. Your situation is bad, no matter how you slice it. Give yourself the grace to call suffering what it is."
AMEN!!!
Sometimes I wish God would just give me a billboard for life's decisions. We are praying for you.
I ask God to give you the answers you need, peace throughout the decision process, and the strength to execute whatever plan He reveals. He is faithful to His children! Thank you for your faith in Him.
We also live in a tiny space. 1 bedroom, 1 bath guest house of my parents. My husband and myself, three children, and one on the way live in about 800 square feet. It can be done! We live in the country, though, so we have the freedom to step outside and get into the open. I don't know what that is like in New York.
Brad built a bed for us that is double-decker. Our queen size bed is on top, and his office is underneath. We put it in our living room, so the living room is actually our office/living room/bedroom. You can see pictures of the bed at http://www.bradstanford.com
The baby's crib fits just between a chair and the wall. Our middle child sleeps in the hallway which also houses the washer/dryer. And our oldest has the back bedroom but it also shares some of her brothers toys, plus the entrance to the one bathroom. We are considering enclosing the porch, though, and opening up the existing house wall to make room for the fourth child.
If you bring Ira home, start by relooking at your space and thinking of any and every possible way you can rearrange, make use of wall space, create more storage, bunk beds, etc. It's still a tight fit, but if you look at your home through new eyes, you'll be surprised at how much more living area you can eek out of it.
We will keep you in our thoughts and prayers as you go through these decisions. There are no easy answers, but the Lord will make it plain and clear to you, in His timing.
Working through these things is a process. And different for every individual, every family, every situation. There are no right/wrong answers.
But we all know by your honest writings that you will process this and make the best choice God calls you to make.
This was in my inbox this morning, and I imeediately thought of you:
"The phrase "God is good" cannot be reserved for those moments when life turns out the way we had hoped."
-- Stacy and Paula Rinehart
You (as in "you and Laura" will do what is best for your family. We are in prayer for you as you continue to make tough decisions.
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