I'm hangin on by a string

[mamasbabygirl]

Mom seems to like it quiet these days. Her room is the study, open to the rest of the house and I did not think it would be an issue, but it is. Her head is hurting so bad, especially at night. My children are lodu and rowdy and that's that. I have been making them go outside, but they don't want to play in 95 degree heat. They're rotten..

Liam's Dr. called me last night to tell me that the radiologist report from the kidney ultrasund says "Active kidney disease, possible Alport Syndrome". I can't believe t, but I can bc it has been passed onto me from my dad. I probably have it too, but females do not show symptoms. I meet with his nephrologist Monday to find out how advanced I guess. I have reading like crazy and have come across a few support forums, but you guys are like my family and I'd rather express my sadness here. I'm sad. I'm scared out of my mind. Somehow I'm functioning every day, going to work, trying to keep my mind occupied I guess.

SF has found a funeral home that you can pay to donate mom's body to science-to the University of Cincinnati. Mom has been a huge advocate of organ donation all of her life (as this was what saved my dad's life right after they were married) and I was saddened to find out she would not be able to do that (expect maybe her corneas), so this is a very cool alternative. SF did not want to tell her about it, but I do. Should I?

You guys are always here for me and I love you all.

[Treebywater]

Oh Lori,

I so hoped that you would find out better news regarding your son. And darn it, I'm mad for you!

It's also tough that Mom is needing it quiet with kids who are needing to be kids. Praying that you will all be able to work with one another.

Sending you so many tons of ((((((hugs)))))) all my love and prayers.

We ARE here for you.

[terriep]

Lori,

I really don't have answers for anyone right now - just hanging on myself. Your mom's wish to donate shows what kind of person she (and you) are. I can't even begin to know what you are feeling about your son. It is so hard to put into words. Just know that I keep you all in prayer - especially your little one. Hugs to you all, you will make the right decision, you always listen to your heart (which I believe is OH SO BIG).......

[Don Wood]

Keep hanging in there, Lori. We're here for you. Rats, but you have had more than your share. Try to take it a step at a time and not leap ahead with more worries than are truly there. Don

[EastCoastLadi]

Lori,

You're going to be ok, I know this. I tell people I can handle anyone's illness and health problems, except for my children, I fall apart and panic at the smallest things. I know about dealing with a child that has to go to specialists. My youngest unfortunately has a potentially deadly allergy to nuts, when I first found out about this, it had been only a couple of weeks after we found out about my husbands cancer. I was devistated, I couldn't take it, not my baby!...it wasn't fair at all, what did she do to deserve this? ...how could I keep her safe from everything?.....It's still very difficult, the visits and tests to the allergist, nothing can cure what she has...(sounds so much like my husbands' prognosis), we just have to be very vigiliant about it. It is amazing how some people look at you and think it's in "inconvience" for them because of your "special" circumstances, that ticks me off big time, because if the shoe were on the other foot, I would be as understanding as possible. I'm sorry about the rambling, I know your son will be ok, of course it just means some more extending of yourself, but they you can handle it. As far as mom and her wishes, I don't know if you could ask her, "what if", without going into details.....Please take care

Grace

[Marmar]

Lori,

I'm so sorry to hear about the news with your son. Hopefully you will find great Dr.'s that will help him through this.

As for your Mom, we had my mil living with us through her cancer, and when she was on the very strong pain meds., we put her in our bedroom because she got very confused with all the different conversations going on. Yes, hubby & I took up on the sofa...wasn't very comfortable, but better for mil to be in her own room.

I really don't have an answer for you, as to tell her or not. I think that is something you will think about yourself, and then in the long run, decide with your heart, and I'm sure you'll be doing the right thing.

Please take some time for yourself. You have a double whammy leaning on you!

Love and prayers to you and your family.

Mary

[Linda661]

((((Lori))))

I'm so, so sorry to read this news -- you've had much more than your fair share of this rollercoaster ride. Crossing everything that Liam will do just fine in his journey with Alport Syndrome. Isn't there anything they can do to help alleviate the pain from those headaches your mom is having?

If it were me, I'd discuss with your mom her current wishes regarding organ transplants that are possible and the science donation idea, especially since she has been a big supporter of helping others in that regard for a long time so she seems to not be adverse to discussing such issues -- you're going to find it really comforting to know what her wishes are on things like that......really helps with closure too when you get a bit further down the road to where I am about now ...... if you're not personally comfortable doing that, as others have said, you won't error by simply going with your heart.

Many hugs,

Linda

[gail]

That string you are holding onto???

We are on the other end, supporting you and holding you up. Praying for you for strength and courage, for your mom that her pain lessens, and for your precious little guy that everything is okay

gail

[Snowflake]

Lori,

I believe the option of donating her body to science should be your mother's, not anyone else's. She may have supported organ donation, but maybe she's not too keen on strangers peering at her whole body. She might be okay with it, and she may not. Ultimately, that should be her choice, wouldn't ya think?

For your son, pull it together. You can't fall apart, YOU set the tone for him. If he sees that you are devastated by the news, HE will be devastated - and scared. You need to find a way to deal with all the feelings you have without having them come out around the kids. He does need to know that you are concerned for him - heck, he KNOWS something is up with all the in depth doctor's visits and testing he's had. Don't show him that you are scared sh*tless.

Can Mom spend afternoons in your bedroom and return to her bedroom when the kids are tucked in for the night? Could the kids play at a neighbor's house? Is there a local park they could get the energy out at?

Your kids are kids and they need to expend the energy, but they also need to learn about "inside" and "outside" voices and that they are causing their grandmother pain, not just annoyance. Kids get it, but need an outlet, too.

Hang in there, Lori. You CAN do this, you WILL do this - there simply is no other option.

Big girl panties, all the way!

xxoo,

Becky

[jendew]

I'm so sorry, Lori. On both counts. It's so difficult dealing with a sick parent, and then to have a sick child on top of it. I can't imagine the pain and heartache you're going through right now. Just know that we are sending up prayers for you and your family right now. Just keep hanging onto that string.

Jenny

[cindy0519]

(((Lori))).....sorry no words of advice. Thinking of your family and wishing you days filled with love, laughter and PEACE!!!

You are in my thoughts and prayers,

Cindy

[ztweb]

Lori,

I am so so sorry about all of this. I think of you often and want you to know I am saying a prayer for you. I still think that your health issues will resolve...that is just a gut feeling.

As far as the body to science thing...wow, that is a tough one. I think your mom would be pleased...what about telling her you heard about someone doing it from this site or something. In other words, maybe it is something you "came across" rather than something you researched???? Don't know...just a thought.

God bless,

Jen

[ErinC1973]

Lori, tie a knot in that string and pull...we are all at the other end, giving you love and support. This is such a difficult time for you, but just remember we are here. You'll make it through, and so will the boys. Kids are resillient; we learned just how much when I was on bedrest for five months in my pregnancy and my mom died during it all. The twins rarely got out except for school, but family and friends helped, and it made the times they did get out that much more special. They learned patience and understanding in the process. We were lucky to have my mom living with us, too, and now, six months later, they are talking more and more about how much they miss her. It is really hitting me how much they "get it," and that makes me feel good.

I am so sorry your mom is having so much pain. Nowadays, I am crying more than ever about how much pain my mom endured in her life. It is just so desperately sad, and heartbreaking that we are seemingly helpless in all of this. I so wish it weren't true, and that your wonderful mom wasn't facing all of it. She sounds like such a beautiful, neat lady.

Hang in there, Lori. You'll make it through--through all of it. Not that you want to, but you will.

[NancyT]

Dear Lori,

SO sorry to read all of this, thinking of you.....

NancyT

[cmrsm]

Dear Lori,

I am so sorry for what you are going through, life is just so hard. There is not much that one can say in situations like this except to know that my thoughts and prayers are always with you and your family. You are a strong person. I do not know how I would fair if one of my babies became ill. At one point the drs thougth my 2 year old daughter had arthritis because she was unable to walk and i did not handle that well. Most importantly do not forget to take care of yourself while your taking care of everyone else. What would happen to them if you got ill.

Hugs to you. God Bless.

Cathy

[TamHol]

Waiting for anything is hard and makes you anxious and builds the frustrations by the day. But you know this with test results and answers to questions ... your well trained for this. You'll make sure your son grows and is healthy as he can possibly be, I don't doubt that for a moment. Wonderful things have happened in the kidney world .... they have more to offer now. Keep the faith!

The kids should be kept an arms length away from Grandma, for their own sake and emotional well being. My husband is still haunted by his last visits with his grandmother remaining days. The pain in her head I would assume will be there regardless of the level or source of noise.

Your a great "gate keeper", every family has one and for yours it's you. Don't let yourself forget that ...

I hope a quick relief for your mother, and easy solution for your son.

Tammy

[Ry]

Lori~

I am so sorry for what you're going through. I would talk to your mom about what she wants and the body donation. I am also an organ donor, but no way would I want to donate my body for research--just me.

You know all those people that offered to help at some point? Call them and have them take the kids to McDonald's, out for the day - whatever-- find a young teen in the neighborhood that will watch them at their house. Anywhere they can let off a little steam for awhile. Beck's idea of moving her to another room is a good one.

You're doing so good Lori, you really are. You can do this.

Rochelle

[kreed70]

((Lori))

I love Gail's "we are at the other end of the string" SO TRUE!!

You are in my prayers!!

Kelly

[Ann]

Lori, I don't have too much in the way of advice for you but I do want you to know that I'm thinking of you and your family and keeping all of you in my prayers.

[dchurchi]

Lori,

not sure I can add any more to the advice already

given, but I can add many more prayers

[Maryanne]

Hi sweetie,

I just got home from vacation and the first thing I did was to look for a post from you.

I am really sorry for your son's dianosis but I also have a gut feeling that through all of this he will be alright. You have to put on a happy face around him and let him feel comfortable that he will be alright. I know that the news was devistaging, but you are a STRONG person and you will find the strength to get through these difficult times you are faced with.

As far as your mom, you did get lots of advise here. Eveything is your decision as you always got through all those siutuations in the past.

I just want you to know that I am thinking of you and sending you strength through my meditations.

Hand in there, you will get through this. Keep venting to us, as we have strong shoulders for you to lean on.

Maryanne

[paddy]

So sorry to hear this Lori. I am sending prayers and positive vibes to you and your loved ones.Paddy.

[purplelady47]

Just wanted to let you know that I am thinking of you Lori and sending you lots of strength, courage and hugs.

Pam in FL

[missyk]

Lori...

Gawd...it all seems like so much right now, I know! You'll make it, one minute at a time if you have you, but you'll make it. I know you will. Somehow, we all make it even when it seems impossible.

I think talking with your mom about donating her boday is a good idea...as was said, it should be HER decision. The one thing I'm wondering about, though, is that I know she gained alot of weight from the steriods and Mom was told that because of HER weight, she could NOT be used as a cadaver...although she wanted to VERY badly. It's something you might want SF to ask about before hand.

Much love, many prayers, and tight hugs coming your way,Lori.

xoxo

[trish2418]

Wow, Lori, so much to deal with. Trust your instincts as far as your son and your mother go. You'll always do what's right if you follow your heart. I'm sending lots of hugs and prayers your way.

Trish