Greater Understanding

Every time I get to spend alone time with my mom I understand more and more the challenges my dad faces and the heartbreak my mom is going through.  I have been kind of out of the loop with having to take care of my sick kids, and as I get wrapped up in my life again its easy to disconnect from everything that is happening just 6 blocks away.  But, as we sat at dinner tonight I saw once again how painful this all is for her, and how much life has forever changed for her already…and the reality hits home.  I thought it might be helpful to try to give you all more understanding, not only to help guide your prayers, but also because I know my mom feels incredibly alone…not because of people not caring or being involved enough!  I can’t even fathom what it would look like for people to do more!  She feels consistently and TOTALLY incapable of expressing the gratitude she feels towards all of you, and incapable of ever giving back in the degree that she has been given to!  Its humbling to be at such a vulnerable place, so in need, and so incapable of handling everything yourself…especially when they’ve spent so much of their lives in the “giver” role.  But, the reason for explaining is a similar dynamic to what we experienced in the hospital.

When my dad was at the U of I, the nurses would walk in and my dad would be so friendly, do the pleasantries, and then when they would walk out you’d see what he really felt or was capable of.  None of the nurses could accurately assess the situation or determine how he was doing without our interpretation because he is such a congenial person by nature…even with a head injury in a hospital bed.  So he would say hello, I’m feeling good, even remember names, with no one realizing that his capabilities didn’t go much beyond that.  He was actually left once with instructions on how to order his own meals.  They actually thought he could do it.  So, when we arrived at 11:30am, he’d not had anything to drink or eat all morning.  Even if he’d gotten the meal up there (which would NEVER have happened), he might pick up a piece of food, forget it was in his hand, then forget his tray was in front of him, and stare at the TV…no idea he should be eating.  So no one would get an accurate picture of how he was doing.  We had to educate every single nurse that came on duty.  And a lot of that is because of his abilities to be congenial, engage in the pleasantries, and repeat back to people what they’ve said (“Rick are you doing good?”…”Yes, I’m doing good.”).

In many ways, even now, I get a re-education every time I’m with my mom, because I can get a very inaccurate picture based on his initial responses to me.  He appears much more functional and “in tact” than he is.  And he’s made such a recovery in ways.  People are always shocked to see him and see how well he’s doing.  Most are not expecting him to look as good as he does.  And don’t get me wrong…we are GRATEFUL for all the rehab that has happened!  He has come a long ways!  But in terms of my mom’s reality, in terms of their marriage and what this is like for her to walk along side him, he is capable of so little interaction, so little “other-centered” thinking and behaving and little to no self-initiated relationship.  For a couple that has lived their lives helping other couples/families experience richer relationships and pursue greater levels of intimacy, it is a real “death” to go back to a place of no relationship, no interaction…and then to realize that she will most likely never experience again the relationship they had worked so hard for is devastating.  Her husband is gone, yet still here!  Every now and then there are flashes of the man we’ve known, and there’s often more going on in his mind than he is able to communicate, but the brain connections that once allowed for independent, other centered relationship are just not working in the same way post-surgery.  He lives most of the time in this ego-centric world, without the the filtering mechanism to guide his words and behaviors.  He just repsonds with his immediate feelings or thoughts, which is charcteristically very child-like.  And few of those words ever get verbalized. 

My mother always joked about how she’d make a terrible care taker, but what I’ve always known is true, that she is capable of living outside herself better than almost anyone I know.  She is fantastic with him!  She’s compassionate, she’s creative in her responses and redirection when he’s confused or frustrated, she encouraging, but still real.  My mom will often say, “How can I complain when he’s the one laying on the radiation table, all he does is go to Dr. appointments.  I’m not the one dying.”  And that is truly how she lives.  But inside she is grieving a husband who has been gone for quite some time, and most likely will not return.  I know she asks herself often, “Is this really my life?”  Its so hard to wrap your mind around the fact that all of this is happening!

I hope that helps guide your prayers for my mom!  She’s good woman, living to the absolute end of herself right now, and hurting so much.  I wish I could save her somehow from having to walk through such pain…but I can’t.  I have to rest in a promise that my mom has told us so many times:

“For I know the plans I have for you, declares the Lord. Plans for good and not for evil. Plans to give you a hope and a future.”

A Walk Down Memory Lane!

A quick note…apparently the garage sale is GOOD SIZED…so feel free to go do a little shopping!  And if anyone has free time tomorrow and would want to help out marking, email Larry Hunter at lhunter25@mchsi.com.

On to Number Two

Well, only two days after Emma’ fever broke, Garmai got hers.  Madeline has yet to get it, and I was really hoping she would get it at the same time as Garmai.  Chances are that hers will hit this weekend!  🙂  My mom was telling me about one winter when all three of us kids got chicken pox one at a time.  She spent almost the entire winter with a sick child.

It has actually been kind of a blessing in disguise.  Its forced us to be home, get rest, and slow life down for a while.  The flip side is that we couldn’t risk bringing the sickness into my parents’ house, so I’ve only been over there once in a week and a half.  I know my mom is feeling the difference, but my hands are tied at this point.  We have to careful about my dad getting sick while he’s doing his treatment.

My dad is in his third week of radiation/chemo, and is tolerating it quite well.  No hair loss yet, although he did have a slight incident with his electric razor, and came away with only a couple bald spots!  Glad to see he has initiative.  His short term memory is patchy, sometimes quite good though, and he can answer a fair amount of questions about previous things in his business/life.  They are taking him down off of his steroid, which is helping a ton with his anxiety and extreme hunger spells, so he’s been pacing less.  But overall, he’s much more independent than he’s been in weeks.  He can still get confused with his medications, so he can’t be unmonitored, but he doesn’t get nearly as confused doing every day things.  I did however, do a little TV remote education class with the two of them, so I could teach my mom how to fix problems and show my dad which buttons to never push.  I think that solved the TV thing.  His speech is improving, and he has been answering the phone from time to time.  I think most people who interact with him, knowing where he has been in regards to functioning, would be quite amazed at his capabilities.

My mom and I are brainstorming ways to get her some rest/time away, because she’s not going to last at the pace she is going right now.  She said that one of the biggest changes for her is having to be “on” all the time.  And she’s done it all with fairly severe headaches.  I know there are many of you who have offered to take her out to lunch, which she greatly appreciates, but right now she’s kind of in a catch 22 situation.  Being with people is quite tiring for her, and doesn’t allow for her to really let down, which is what she needs, but being by herself makes her loneliness very real,  and then she has to face what has already begun but continues to lurk out there in the distance…life without her husband.  She doesn’t know what really feels best right now.  But I do know we need to find ways that she can pace herself, especially not knowing the time frame we are dealing with, so that she can make it the distance.

Rebekah and her soon to be 1 year old are coming home again for the weekend, and we get to throw a first birthday party for James!  It kind of stinks because we may have to consider outdoor locations so that our sick family and the rest of our healthy family can all meet in one location.  We’ll see what we come up with!  And we just got our reservations for our North Shore trip!  We are SOOOO excited!  On some of my down time I’ve been putting together a digital photo book, that I will be updating as life continues with my dad, that we can order down the road, and I’ve come across pictures of us from the North Shore from several different eras of life!  I am excited about taking the girls, but this will be Travis’ first time too! 

Thank you to everyone who has played a part in bringing meals!  That is such an unbelievable blessing!  Thank you also for the donations that continue to come in…we are getting bills paid, praise the Lord!  Thank you for the cleaning help as well.  My mom wouldn’t even begin to have to the time to attack the cleaning.  John and Roger…if you guys could decide when would be a good time to start mowing…I know NOTHING about lawn care!  Also, my parents have had one of the toilets overflow several times and have come downstairs to find inches of water across the bathroom floor.  I think what it need is a new seal put in at the base.  Travis has offered to take care of it, but he’s trying to catch up on the filter servicing and I really don’t think he’s going to have time.  Does anyone know enough about toilets to want to take that on?  Just post a response!  We’ve had fairly flawless computer functioning, so that is good.  And we have some guys coming over this weekend to move some fencing so that we have a continuous fence around my parents’ side yard.  Someone actually walked into their yard a few weeks ago and let their dog poop on the sidewalk right outside my parents’ back door.  I couldn’t believe it!  So, hopefully no more of those gifts will be left! 

The garage sale is going to be held April 30th-May 2nd, at 143 30th Street Drive SE, which is just one block from John’s Lock & Key and just 1/2 block from First Avenue.  So, if you still have donations or would like to consider bringing stuff by, I’m assuming the curtain rises on Thursday!  Thank you everyone for putting this together.  Contact Larry Hunter with questions at lhunter25@mchsi.com.

I’m back…for a few minutes!

Our poor little Emma…she is going on 4 days with a fever.  Tonight she is at 101*.  So, we will call the doc tomorrow.  And we’ve decided to pull Madeline out of preschool, so I’ve had two home all week.  My mom, consequently, has had almost no help from me!  She’s often dropped by during my dad’s therapy appointments, which is nice, and I’ve been very productive at home, but I feel bad for not being able to be more of a support.

Madeline and I have been having these little therapeutic talks at bedtime.  I will ask her questions and she will say, “Why don’t you talk to ____.”  And then she will name whichever animal is in bed with her at the time.  So, I will ask the animal all about how Madeline is doing.  Its quite funny because when I hit a question that is either too uncomfortable or she doesn’t want to talk about she will give a big yaaaaaaawn and then say, “Mr. Bear (or whoever), is really tired and wants to go to sleep now.”  But every single night she would ask if its a school day tomorrow, and then say, “Mama, lets talk about school. I just don’t want to go!”  Travis and I both feel good about the decision to keep her home.  I think right now its a mixture for her of not having the attention span to focus on things she may not be interested in, along with not being able to emotionally handle the more rejecting interactions.  And I think for her it also is always very hard to be “left.”  I asked her today what her favorite thing was about preschool and she answered, “You picking me up!”  She said she worries about me not coming…which, doesn’t that make sense?  She probably waited every day for her mom to come pick her back up and take her home.  We just figure, preschool is supposed to be fun.  If its more stressful than anything, why

The Latest

Sorry its been so long since my last update!  I came down with a virus (after my mom had gotten it…and then I passed it to Emma who has been home from school all week) which totally wiped me out.  My sister was also in town this past weekend, although I didn’t really get to see her much.  We’re all lamenting how much of our time has to be spent doing functional stuff instead of spending time together, but we’re getting there!  One thing we’re looking forward to is that we are going to try to make a trip happen to the North Shore in June, a few weeks after my dad finishes his chemo/radiation.  We’ve actually never gone on vacation with our whole crew, so it will be a first, and I’m looking forward to the time together…at a place where lots of memories have been built.  I’ll be back to finish my update…

Truth or Lies

If you have had kids, have them now, or remember being a kid, you will know what I am talking about when I say, “I hate the messages my kids pick up from unkind peers!”  My mom said the other night as we were talking about this issue, “No matter how much you reinforce the right stuff at home, if their peers say it about them, it sticks!”  Well, in the past couple of weeks my two youngest have come home saying unbelieveable things about themselves.

My daughter Garmai, who is just a gorgeous girl, has this cute, thin little athletic build.  She’s not skinny like her older sister Emma, but she is thin and has a cute little body!  Well, a couple of weeks ago she began talking about how fat she was and how big her thighs were…she’s 7 years old…and last week she told me she has kids calling her chubby on the playground.  My heart just dropped and I became instantly angry!  Chubby???  Nothing could be further from the truth!  If asked, she would describe herself as an ugly chubby girl!  It makes me so mad!

Madeline, who is 4, got in the car yesterday and said, “Mama, I don’t want to be just stupid old Madeline. Cause I’m just stupid Madeline.”  I said, “Where did you hear that you were stupid?”  “I say that about myself when no one wants to play with me.  I say, well I’m just stupid.”  She’s started having “potty” accidents again at home, throwing tantrums at night because she has to go to school in the morning, getting scared at night to be away from me and that a bad man is going to take her, not wanting to get out of bed in the morning, telling me who she didn’t play with when she gets in the car and that she doesn’t want to go back.”  In talking to her teacher today I said, “I know she plays with kids and she looks happy when I pick her up, but I think the rejecting experiences she is having is what she is walking away with and how she is beginning to define herself.  That’s what worries me.”

Madeline’s major “group” experience prior to preschool was the orphanage.  (An environment that was fear inducing, neglectful, abusive, and representative of the overall unhealthy Liberian culture…and that was an improvement from the health of her original home environment.)  On top of all other abuses, Emma says that she was left for hours sitting all by herself in poopy diapers with flies flying all around her.  Sometimes Emma would try to go change her diapers and then would get in trouble for it.  She was chronically sick when she came, and in the pictures that we have of her in Africa, there’s not one of her smiling.  Although at her current preschool I’ve seen some hurtful reactions take place with the other children, Madeline’s teacher said that her body language at times, she thinks, can send the message to the other kids to stay away. 

I spent some time in bed with Madeline last night talking to Mr. Piggy…who was telling me all about what Madeline was thinking and feeling.  Don’t ask me how that started!  It sounds very therapeutic, but it wasn’t intentional at all!  But what is so frustrating is how quickly the messages we get either build us up or tear us down.  They can be messages actually said or insinuated by other kids, or they can be messages that are incorrectly perceived because of previous woundedness.  Either way, the impact can be significant!  And even though I have no current examples for Emma, I think Emma is our most wounded of all three, and her perception of herself affects all of her choices and perceptions as she wades through her new life here!

So how do you go about trying to combat all of that?  How do you know when your child just is not ready to be faced with something, whether because of age or developmental stage…or even emotional age?  How do you know when the impact has gotten too damaging and the benefit is not enough to warrant continued exposure?  How do you know when to allow your child to experience things while helping them to get through it and learn?  I don’t know of a hard and fast rule besides talking to and listening to God’s leading in each and every situation…and trusting your own heart as a mother.  (And asking your mom!)  🙂

If anyone knows of any fun activities (shows, movies, books, games, etc.) that might be a way to interact with the girls about these types of issues and feelings, please pass them along!  I know there are sometimes kids concerts or plays that deal with different issues kids face.  I’m open to ANYTHING!!!

A Few More Pics!