Wednesday, March 30, 2011


I am having a very special guest this weekend!  She used to live with me all the time.  I held her when she cried, braided her hair, drove her to many, many softball games and loved her from the moment she was born (probably even before that:-).  Bethany is coming for the weekend and I am so excited!!  I miss her (and Ashleigh) so much and am really looking forward to having her here for a couple of days!  Today I got the house cleaned and am looking foward to making her favorite cookies and getting her room ready.  Maybe she will even bring a cute little dog with her:-)

Monday, March 28, 2011

The Ugly

Sometimes I get tired of doing the same thing every morning.  Sometimes I am short with Davin and I do not appreciate his lack of helpfulness in the dressing process.  Sometimes, I get tired of pulling his arms to get his shirt on.  Sometimes I get tired of him coughing food on me during breakfast....again.  This morning was one of those times.  I wasn't feeling great and my patience was low.  By the time Davin had his coat on and was ready for school, he was looking at me with a look that said "mom, why are you mad at me?".  That got me.  I explained I wasn't mad at him, but would appreciate if he helped more. 

Tomorrow is a new day.  Same routine, but hopefully better attitude:-)  I am thankful for new days and truthfully, I am thankful for the same old routine.... most days;-)

Friday, March 25, 2011

Part of His Journey

When Cheney Alan was born, I feared that God would take him from me.  It was not a fear I had felt when either of my girls were born.  At some point in my life, there was a nagging fear in my head, that if I had more children, they would not all be healthy.  When Davin was born, things seemed perfect.  Too perfect.  I remember looking over the side of his crib and thinking that everything was too perfect.  Something was not right.  Davin had some trouble eating and I spoke to the nurse several times about it and she told me I had a good baby and to enjoy him.  Oh, I did enjoy him. 

For some reason, that year, getting Christmas pictures was extremely important to me.  All of the kids had to have coordinating outfits.  I think somehow I knew that this picture was going to be "my perfect life".  That brief moment in time when I thought everything was the way I wanted it to be.  Four beautiful, healthy children. 

Davin went to his 2 month check-up and his 4 month check-up and passed with flying colors.  Soon after that, I started wondering when Davin was going to "uncurl".  You know how newborns are very curled up like they are in the womb, but then they start stretching out?  I began noticing that Davin did not move his arms.  They were basically stuck to his sides.  I started moving them up every single night and praying. 

Davin went for his 6 month check-up and I asked some questions.  I voiced concerns about his arms.  The doctor told me that it would not be anything neurological since his legs appeared to be fine, so I should just take him home and watch him for a few weeks.  I believe I made it for one week and then called and asked to see my pediatrician.  (We had seen a different pediatrician for Davin's 6 month.) 

My pediatrician examined Davin and referred us to Easter Seals.  He told me he did not think it was neurological, but if I was offered the chance to have Davin see a neurologist, I should take that opportunity.  We had our first evaluation with a PT.  We were brand new to this world and I did not want much to do with it!  Now I realize that our PT, Jane, knew exactly what the problem was with Davin, but she could not tell us.  She told me that Davin needed to see a neurologist and my pediatrician's office helped us set up an appointment so we could get in earlier.  We met with a social worker who told me he was sure Davin just needed some arm exercises and he would be fine. 

What happened next is to me the day that changed my life.  But, it really wasn't the day that changed my life.  It was just the day that my perception of my life changed. 

On June 11, 1993, my mother-in-law drove Davin and I to Jefferson Hospital in Philadelphia.  We met with a neurologist there.  He examined Davin and kept saying good, good, good.  I figured it must be going well!  He asked me lots of questions.  (Later I would know I will be answering those SAME questions for forever!)  At the end of the exam (which I thought was going well), he looked at me and asked if anyone had ever put a name to this for us.  I said no.  He told me that Davin had cerebral palsy and did I have any questions.  He said it that flatly.  Just the facts.  I had only one question for him at the time.  I asked if Davin would be able to walk and the doctor told me that he probably would.  I kept myself together, paid my bill and walked out of there. 

I remember getting to the elevator and having a really hard time holding it together.  I am not a big crier, so I did not care to be sobbing in the doctor's office (although I would later be sobbing all kinds of places:-).  I was able to keep it together as long as my MIL didn't say anything to me.  We got to her truck and she asked how I was doing.  That was it!!  I lost it.  I put my baby boy in his car seat.  My MIL prayed with me and off we went.  I now had to go tell my husband that our baby boy probably had CP.  (There was no specific test for CP, so we had to have some other tests done to rule out anything else.)

My MIL drove me to Alan's office and I went upstairs.  His secretary saw me and asked how the baby was.  Remember the sobbing I was about to do?  Of course, it is much better to have a hysterical crying fit in a business office than in a neurologist's office;-)  The secretary quickly went to get Alan and I remember him coming out and me just barely getting the words out and Alan suggesting we go somewhere else.  He held me and I cried and cried.  We then went and picked up our other children from friends' houses. 

I remember being at our home and just feeling crushed.  My everything felt shattered.  Nothing was the same.  Nothing.  I had to call my Mom.  She had a feeling it was going to be that.  I had to call my sister.  She cried with me.  My MIL called my SIL.  She handed me the phone and told me she thought I would want to tell her, but I had had enough. 

Alan and I sat on the couch together.  We were just absorbing.  How could our world be rocked this much?  Then, Alan said the wisest thing he has ever said.  It changed everything for me.  Well, it started to, anyway.  Alan asked me if Davin was any different today than he was yesterday.  Brilliant.  No, he wasn't.  Yesterday, Davin had CP, but I just didn't know it.  Today he has CP and I know it now.  He was still my baby.  He was still the same baby that we had brought home from the hospital and loved and loved. 
Looking back, I can remember God bringing so many things in my way to make me think about people with disabilities.  It seemed like there was something on the subject on television if I watched, if I went to hear a speaker...everywhere!!  I was turning off channels, walking out of rooms, and just saying no.  If God was preparing me, I was not hearing it!!  I would not.  That had nothing to do with my life.  I also did not know it at the time, but God would not let my Mom pray for Davin to be a healthy baby any longer.  She was still able to pray for him, of course, but not that he would be "healthy".

I have learned so much since then.  Not about CP.  About me.  About Davin.  About my God.  About a brother who thought his little brother might be faking so he would get toys from the therapists.  About sisters who were willing to get into a fight on the bus to defend their little brother and who fought over who was going to hold him until he was probably 10.  About a husband who adores a boy who isn't perfect by the world's standards.  About perfection.

Thursday, March 24, 2011

A Hot Date:-)

Since moving to Rochester, and not having our older kids here, we do not go out very often without Davin.  Tonight will be one of those rare times.  Alan is taking me to the theatre.  We used to be members at this theatre when we lived here before and it was always something we enjoyed very much.  All of our kids were big enough to stay home and watch each other and they always looked forward to our nights out, too. 

Tuesday, March 22, 2011

Apparently Five Days Is All It Takes

I went away for five days back in January.  My sister and I were going on a scrapbook retreat and I had to travel to get there.  I left Davin in the very capable hands of his Dad.  When I got back, Davin nearly jumped out of my arms to get back to Alan.  Really?  How many times has Alan gone away?  I could not even count. 

Over the years, I had been Davin's primary "feeder", and Alan fed Davin dinner.  7 years ago, that all changed and I became Davin's only "feeder".  I have fed him nearly every meal in the last 7 years, although school does do lunch when he is there. 

While I was away for those five days, Alan started putting water into Davin's ensure when it got near to the bottom of the cup.  When I got home and started feeding Davin, Alan let me know that he had started doing this for Davin.  (So??  I have been feeding him for the last 18 years!  I don't really need pointers, but thanks:-)   Don't you know that Davin has insisted on having water put into his cup when his drink gets to be almost gone ever since I left for those 5 short days??  This morning, I forgot and did not have water on the table while I was feeding him.  He simply refuses to drink and directs me to get the water.  He can not possibly drink it any other way anymore!! 

How can you be so bossy and yet be non-verbal at the same time?  Davin could teach a class on it.  I am sure of it!

Monday, March 21, 2011

My Loubie

My oldest daughter, Ashleigh, is getting ready to begin a new journey.  For the last few years, Ashleigh has worked very hard getting into fantastic shape and eating healthy.  She has encouraged others around her to do the same.  It is contagious. 

In a few months, Ashleigh will head back to school.  Although Ashleigh attended college for several years, she just never quite got the passion.  She wasn't quite sure what she really wanted to do and now she knows.  Ashleigh is going back to school to become a personal trainer.  I am so excited for her!!  (and for me since she helps me every day with my new routine:-) 

I was just talking with her today about her plans and how everything is going to work out and I know it will be a sacrifice, but I also know she has found her niche!!  I am so proud of this girl.  Not because she is going back to school, but for the young woman she has become. 

Friday, March 18, 2011

A Change in Plans

It seemed like my children were all in cahoots with each other.  While everyone was growing up, it seemed that if I had a special day planned, I could say to myself "someone is going to come home sick today". 

We only have one car here, so if I want to go somewhere I drive Alan into work.  I don't drive him in often.  Yesterday I drove him in with plans to get my hair cut.  The weather was beautiful and I was going to go do some shopping and maybe eat out. 

I got a phone call around 10 am from Davin's teacher saying that Davin had cried and was running a slight temp.  He had a rough night the night before, so I made the decision to go and get him.  I believe this is one of the hardest things about having a child who is non-verbal.  Deciding if they are not feeling well is difficult to do in the mornings.  I wake Davin up from a sound sleep (especially since daylight savings) and have one hour to determine how he is feeling.  During that hour, our schedule is planned down to the minute.  He gets dressed at a certain time, fed at a certain time and gets his coat on at a certain time.  Not much time for evaluating his health, especially if it is a minor kind of thing. 

God is so good in it all, of course, as always!  I do not usually have the car and would have had to call Alan and have him come and get Davin with me.  I am not usually dressed that early.  I work out in the morning and do my housework before getting ready for the day.  Since I was heading out, I had gotten ready (even my hair:-) much earlier than normal.  I was basically ready to walk out the door to go get my boy. 

I so wish I had a picture of him when I went to pick him up.  I walked into the nurse's office and he is laying on one of the beds with the lights low and there is a sweet aide holding his hand.  He did not get excited as he usually does when he sees me, but his eyes just said, "oh, she came to get me".  I loved that little look. 

Davin was able to come home, sleep it off and is feeling good as new today!  He even has the day off of school today and the weather looks beautiful!! 

I was kind of thankful that I had this to write about today so I didn't have to write about the small fit I threw yesterday.  (Yes, again.)  I won't go into detail, but wheat was involved;-)

Thursday, March 17, 2011

Possibly an Overlooked Love Language

I have never read the book about the different love languages, but I am pretty sure they did not include my husband's.  It's ironing.  Yup.  You read it right.  My husband's love language is ironing.  When I iron his clothes for him, it just somehow screams to him "I love you Alan".  It just touches him.  Not sure why, but I have known it for a long time now. 

It might not seem so strange to you, except that I am a TERRIBLE ironer.  I am not exaggerating or just being humble.  Most of the items that I iron, look very similar to how they looked before I ironed them.  With my kids it is a big joke how badly I iron.  But, to Alan it means that I love him.  So, I iron for him (I have not always, but presently have the ironing program up and running:-).  And, he wears what I ironed.  Wrinkled and creased in wrong places.  Alan is a great ironer.  When he is away on business, he irons his own clothes and he is fine doing that.  However, when he is home, it just means a lot to him that I iron them.  I guess as long as he is happy to wear his wrinkled/ironed clothes, I will be happy to iron them for him:-)

Wednesday, March 16, 2011

Your Worth is Not on Paper

For nearly Davin's entire life, he has been EVALUATED.  He has been evaluated by physical therapists, occupational therapists, ed. teachers, speech therapists and psychologists (my favorite....NOT!).  When he first started receiving services when he was 6 months old, he would be evaluated in several of these areas every six months.  I would get the results of the evaluations in the mail and just be crushed.  On paper, it looked like he had made no progress and it ALWAYS talked about how different he was from "typical peers".  It took me a couple of years to start putting those nice little papers in a drawer.  I would not even read them.  This has been my habit (for the most part) for the last 15 or 16 years. 

When we moved a psychologist came to our house and evaluated Davin and also gave me some kind of assessment to fill out.  I certainly know that on the papers I filled out (they were fill in the dot, not the kind where you could write answers), Davin didn't score very high.  I mean, really.  Some of the questions were so irrelevant to his life.  For the psychologist, I was impressed as I watched Davin really pay attention and answer the questions.  I also really do like the psychologist and she has gotten to know Davin and really like him.

However......yesterday I received the official evaluation results in the mail.  I was so encouraged by how well he is doing in school and how well he did with the psychologist and by the things his teacher has been saying that I (like a silly girl who didn't know better) decided to take a look at the report.  Bad idea.  It showed that Davin's IQ was the lowest it could be and that he ranks in or lower than 1% of the population.  Really??  Are you kidding me?  Have you met this kid? 

I shall go back to my old ways now.  I will put those papers in the drawer and keep them, but never allow them to define who Davin is.  My boy is not what is written on that paper and his abilities can't be measured by the regular standards.  I know who he is.  Davin knows who he is.  He is funny.  He is tricky.  He is smart.  He is loving and he is loved.  I will not focus on those papers, those words.  I will focus on who Davin is. 

Thursday, March 10, 2011

College Spring Break

This week has been much different than we expected.  Cheney's spring break was this week and we had planned to go away on a skiing vacation.  I had let Davin's school know that he would not be there this week.  After thinking things through a bit more, we realized that now was an excellent time for Cheney to look for a summer job and he also did not seem real keen on a busy week, but rather needed some down time to rest and get ready for the last two months of school.  So, we changed plans. 

The week has been spent mostly here at home with just the four of us (although I did make Davin go to school;-).  I have cooked and baked and I always enjoy doing that for our kids.  Cheney has gone on one interview and has two more today.  I spent one day driving Cheney around as he filled out applications and asked about summer employment.  He took me out to lunch:-) 

Davin has spent lots and lots of time just looking at his brother.  It is just the cutest thing.  All week Cheney has begged for me to let Davin stay home, so tomorrow Davin will skip school and stay home and look at his brother all day;-)  We may go bowling which is a favorite activity for both of my boys. 

Good week:-)

Tuesday, March 08, 2011

March 8th

8 years ago, on March 8th, I received a phone call from my sister pretty late at night.  My Dad had passed out and was taken to the hospital by ambulance.  He had not woken up.  I knew that my Dad had been feeling flu-like symptoms earlier in the day, so I didn't worry too much.  Dad probably just got weak and fainted. 

As the hours went on through the night and I struggled to catch some naps in between phone calls and tears, the scenerio grew worse and worse.  Daddy still had not woken up.  It had been hours.  I finally spoke to my Mom around 4 am and told her I would be leaving in the morning to come down.  Unlike my Mom, she agreed.  I expected her to say that we should wait and see what happens and that it probably is not a big deal, but she just quietly said "okay".  I knew I needed to be there. 

The local hospital came to the conclusion that my Dad had an annurism.  He was to be heliported to a hospital in Philadelphia where they could help him.  A drain was placed in his head to drain the fluid. 

I arrived home to NJ sometime in the early afternoon and my in-laws were waiting for me so they could deliver me to the hospital.  I got out of the car and am not even sure I said goodbye to my mother and father-in-law.  My Mom and sister were outside and I just clung to them.  It was bad.  He was alive, though.  I had fear all the way home that I was going to get a call telling me that he did not make it.  That call, thankfully never came. 

We walked into the hospital and I went in to see my Dad.  There are no words to describe how it felt to see him in that condition.  My Dad was in a coma and had tubes everywhere.  Part of his hair was shaved from putting the drain in.  I sobbed at his bedside. 

I then left the room and my brother-in-law hugged me while I cried and cried.  Over the next few days, we would stand vigile by my Dad's side.  We would hold his hand, we would cry, we would wait... Every day was the same for a few days.  We would meet other families in the waiting rooms and some of their family members survived and some did not.  It was a heavy place to be day after day. 

On the Wednesday following my Dad's fall, we finally were told exactly what had happened.  My Dad had a staff infection in his heart and his valve was literally just blown and there was infection everywhere.  The infection was shooting out from the heart valve and he had bruises on his toes and fingertips as a result of the infection clots traveling through his body.  At some point on March the 8th, infection traveled up to his head and he fell to the hard wood floor in my parents' house.  He fell hard.  Due to the fall, he had bleeding on both sides of his head and that made surgery to repair his heart a risky thing.  The neurosurgeon and the cardiac surgeon would have to wait and see when the perfect time was to operate.  At any time, though, Dad could pass away from the problems going on in his heart.  The doctor looked my sister and Mom and I straight in the eyes and told us that he was a far ways away from being who he was before.  They gave us some percentage for his survival (but we were later told the real percentage was 5% that he would survive, let alone thrive) and that was the end of our conversation.  We were devestated.  Crushed.  I could hardly talk or think clearly. 

I immediately went to my cell phone and called Alan.  He and the kids would be traveling down to NJ to support me and to say goodbye to their Pop Pop possibly.  We wanted them to have the choice.

My kids came and my Dad held on.  We had precious time together in the waiting room.  I spent lots of time with my Mom and stayed in NJ for a couple of weeks before heading back home to my family.  For the next five weeks, I prayed that God would hold my Dad's heart literally in His hands.  I prayed that He would keep it beating even when it seemed like it should have stopped.  I prayed that the Spirit would minister to him even if he could not hear us. 

My Dad eventually had his open heart surgery and now sports a pig valve, but rarely oinks:-)  Following the five weeks in the ICU prior to surgery, my Dad had to head over to a rehab.  He was still in a coma-like state.  He did not appear to be "there".  He could not walk by himself, he could not shave, feed himself, or do anything to take care of himself anymore.  He could not read anymore.  He did have his speech, but often did not know who most people were.  He always knew my Mom:-) 

In the brain injury unit of the rehab, my Dad was locked (with a padlock) into a wheelchair to keep him from trying to get up without assistance.  He was kept in a pack and play bed.  It was like a literal pack and play for babies, but it fit over the hospital bed and was enclosed on all sides.  It could only be unzipped from the outside.  He also wore mittens on his hands so he would not try to yank out his trach tube.  He had already pulled out his central line and eventually pulled out the trach, too.  I hated leaving my Dad there.  It was like he was a baby. 

Little by little, he came back to us.  The more he came back, the more frustrated he became being confined in this way.  At the 13 week point, my Mom was horrified at how horribly my Dad was talking to the nurses and doctors.  He had enough!  Alan and I and our kids had come for a visit and could see Mom was very distressed.  Alan said we should just bring him home and that either Alan or I would stay to help care for my Dad.  I called my sister and told her to dress all in black because we were "busting Dad out of there!". 

One of the memories that will always stick in my mind is when we went to pick Dad up from the rehab to take him home.  Alan and I were both there and Alan had driven our suburban.  My Dad had been sedated because he was so agitated, but was also still very weak when walking.  I watched as Alan literally picked my Dad up and placed him into the truck.  The picture just struck me. 

The doctors told us that what Dad was one year following the accident would be what he was forever.  God has continued to heal my Dad's brain in amazing ways.  I have been able to enjoy spending one day a week with my Dad for 7 years that we lived in NJ.  My Dad has started doing woodworking again. He does not figure things out the way he used to and his work is not what it was, but it keeps getting better and he figures out more things as time goes on.  My Dad has the stamina and strength of an ox:-)  He has worked on landscaping my sister's house and mine for the last five years. 

It has been so precious to rebuild my relationship with my Dad as he came back to be "the Dad" again.  I love that he now takes me out to lunch and always has to pay.  Just like before.  I have been able to watch his relationship with my kids be restored, too, as my Dad became more and more of his old self and was able to focus on other people again.  Thank you God.  I know it was all You.  May you have the praise.

Tuesday, March 01, 2011

Marriage Month

In my life, March is the month of marriages.  Alan and I will celebrate 26 years of wedded bliss (okay, it wasn't all bliss, but I have not separated how many years were blissful and how many were not and overall they are all good;-), but that is just a drop in the bucket compared to our parents.  On March 13th, my mother and father-in-law will celebrate 46 years and on March 16th my Mom and Dad will celebrate 48 years of marriage!!  Wow, that is almost half of a century. 

It is hard to describe what a gift it has been to watch these two marriages.  We have watched our parents raise their kids, love their grandkids and love each other.  We have also watched our parents be caretakers of their spouses.  Alan's Mom has many health problems and I am not sure my father-in-law ever WALKS to get her what she needs.  He RUNS.  Every time.  Well, it seems like every time to me.  I am constantly amazed by his utter devotion and dedication to his wife.  I watched my Mom sit by my Dad's intensive care bedside during their 40th wedding anniversary and saw her cry and wonder if my Dad would live to see another anniversary.  My Dad suffered a traumatic brain injury and their lives have never been the same since then, but my mom's devotion to my Dad has never wavered.  She has gotten tired, she has been discouraged, but she has loved him like no other.  (Frankly, he is quite spoiled;-) 

I know this is not something everyone is blessed with.  I know that having two sets of parents that have stuck it out through better and worse is not the normal anymore.  I sure am thankful.  Happy Marriage Month!!