Mom's intuition - enough to make you think you're a hypochondriac!

Has any mom ever felt like a hypochondriac when in actuality, you are feeling whatever one of your kids is feeling? I have done that all through their lives.  When they were little, I used to joke about it, but thought seriously that it was because, of course, when we all live together we both have sore throats or allergies at the same time.  However, over the years, I have learned that more often than not, if I have a new pain or ache such as my teeth hurt, or my throat hurts, or ANYTHING....within a day or two, one of the kids is complaining of the same thing, not knowing I was feeling that way, too.  I used to think that if and when the kids moved away, this sixth sense would go away....but it hasn't.  My only problem is that I can't tell which one of them is the one with the problem (or maybe it truly is me this time - lol) until they speak up.  So don't you think that's a built-in gift from God so that moms would always know what was going on with their kids?  I think we've probably lost some of that intuition over time or ignore it, waiting for the hard facts from the doctor, but in my experience as a Pediatric nurse, I have found moms usually know something. 

How many of you have oh-so-quietly snuck into your baby's room to check on them when they were sleeping because you had a funny feeling?  I have!  I'd try to watch for breathing, but when I wasn't sure, I'd place my hand on their little chest and feel for movement.  In the scariest moments, you don't feel like you feel anything (!), and so you give them a little shake....most often they move, or stretch, and you're relieved.  At worst...you give them a bigger shake and you just woke a sleeping baby!  I was laying in my bed in Devon's hospital room one night after midnight, watching the helicopter landing lights on the roof of the hospital next to ours, when I got that funny feeling.  No voice...just a feeling that said I'd better check on her.  I laid there for a little bit longer because I didn't want to wake her (sleep was a precious commodity) and I felt I was being silly...she was fine.  But I reasoned that I couldn't/wouldn't sleep well if I didn't at least try to check without waking her so I went to the bedside and placed my hand on her ribcage to feel for movement....didn't feel anything.  Gave her the little shake....nothing.  Gave her the bigger shake....still nothing.  Called her name....no response.  Debated, but turned on the light - she was blue and barely breathing!  Thank God he gave me that intuition!  I hit the call button and the nurse came in, called others for help, including portable X-ray, ECHO, and other diagnostic equipment.  I was sitting on the bed while all of this frantic activity was happening around me - still no response from Devon.  I thought about calling Scott at home but it was 2am and what was he going to do except lay at home, worry, and miss sleep - there was nothing he could do.  This was going to go down one of two ways - she either gets worse and ends up in ICU or worse, she dies, in which case I'll call him then.  Or, she gets better, and I really felt that was what was going to happen so no need to bother him yet.  I'll call him in the morning with an update.  And you know, (since she's still alive) that it was the second option....she came through it.  That night, however, was the first concrete sign that the chemo that was killing the malignant cells was also killing her healthy and necessary cells.  Everywhere your blood goes, it carries with it the poison....the brain, the heart, the kidneys, her senses (hearing especially), the bones, her endocrine and female reproductive systems....all were damaged by the chemo.  Some, like the heart, because it is a muscle, can recover, as did most of the brain (very little short term memory deficits still exist - but every now and then, it shows up.)  But the rest have lingered.  Scott and I remember some scary words to hear from your child's doctor, "We will give her this drug and then in 24 hours, we will give her the antidote."  Poison!  They are poisoning our daughter and then giving her the antidote!  I sure hope they don't forget!  This same God given intuition helped me many times.  After that particular time, I trusted every "feeling" I ever had about her health and was able to intervene in most cases.  (Read Lauren Graham's new book, Seriously - cancer? I don't have time for this! and you will see that her mom has that same intuition! http://www.amazon.com/Seriously-Cancer-Have-Time-This-ebook/dp/B00DFEF1X4 Great book!  She is one of my students and had her cancer diagnosis shortly after Devon did.)


Along the same lines, I have a friend whose child was abducted 7 years ago.  She feels she is still alive and so I believe she is, too.  See her story at http://www.jenniferkesse.com/ Other mothers of abduction victims report feeling their child is gone....and sometimes they find them deceased.  I think this is the same intuition that tells us about our kids...mom's radar, so to speak. I'm not meaning to leave Dads out of this conversation, they may very well have it, too, but in my family - its definitely me that gets accused of being the hypochondriac!  Same with adoptions....I have friends and a niece that is adopted but I can't tell you if the moms have that same intuition.  I would think its possible.....  Can you imagine 14 kids?!?!?  You'd always feel sick!

I teach Pediatric nursing and I tell my students that my own kids were my best teachers. We also teach the students to listen to the moms because they have an instinct about their kids....well, that's what I was taught, too!    But after living it....I know this to be true!  And, yes, I think its a God thing!

Summer 2003 (again) - Devon had been a ballerina

Devon and Drew, Corpus Christi Ballet's Nutcracker 2002

Summer 2003 (again) - Devon had been a ballerina since the age of 4.  During June, they do a dance intensive and dance for hours at a time all week long.  She started complaining that her "knee" hurt.  Well of course it did when you are doing "death drops" in jazz directly onto your knees (without padding).  It didn't look different, wasn't red or swollen, and so we had her elevate and ice it every night.  She didn't dance in July so it was a good rest period but she was still complaining.  However, let me clarify, she was complaining every evening after she had a day at the beach or spent the day running around with friends, jet skiing, being very active...you get the picture and can see why our concern wasn't completely peaked.

(Remember, we're selling our house and closing the end of August - see earlier post).  By the first of August, we decided that we better check out the knee in case there is something wrong that needs to be fixed.  We knew it wasn't a break so an X-ray wasn't needed but an MRI might show if there was muscle or ligament damage.  Scott took her to a friend that is a local radiologist while I went to work. I remember getting a call from Scott on his way home with her.  I was entering items into the computer and really didn't want to be bothered - we were pretty sure it was nothing - and so I was only half listening.  Picture phone held to my ear with my shoulder (yes, the old-fashioned phones!), me working away on the computer, concentrating on what I was doing, and listening, sort of, to him.  I was waiting for key words such as, "It's nothing", "it will be fine," "didn't find anything," and "the MRI was negative."  Every wife has been there and probably a few husbands.  The statement that caught my attention was, "We have an appointment at MD Anderson on Thursday."  My hands froze on the keyboard, "Wait, they're acting like its cancer!"  "It is cancer!", he said.  

From here on, its kind of a blur.  I was journaling back then, too, but inconsistently, so I don't have a great record of exactly what was going through our heads at the time.  In addition, that is one thing that "time" is good for, it usually does heal and help you forget the icky stuff... if you want to forget.  But some things I can't forget - the scene above is one - it's still clear as day and the feelings are still sharp as a knife.  Many cancer survivors say the same thing....they can forget Birthdays of loved ones and their own Anniversary but they never forget the day they were told they had cancer.  

On that day, we began a journey that would forever change our lives.  We were so blessed because it felt like we had someone holding our hands and guiding us through everything as it came up.  We had very little time to research anything.  This day was a Tuesday and we had our MD Anderson appointment on Thursday.  We weren't sure what we were going to do about our jobs and the cost of transportation to and from, and the cost (in general), and about how to care for the younger ones....so many things hanging out there and yet a calmness of being on a path to get it fixed.  Feeling like it was going to work out somehow.  Not that we didn't have tears and fears - many!  In fact, we learned that crying in the shower was the best place to avoid the other kids and when you came out puffy and red-faced, it looked perfectly normal! :)  

So it IS cancer....that ended the ballet career and started her on a whole new life path.  She was 15 years old, one week before her 16th birthday.  I'll stick to my story and hopefully she'll write her own someday. There are so many things that show God was with us throughout the whole process (I'm a planner, but I could not have planned this to run so smoothly had I had a year or more to prepare!) It was definitely a God thing!:

• The fact that we went to a friend (Dr. Ramos, Radiologist), who called a friend (Dr. Gonzalez, Ortho Surgeon), who got us the appointment that week with MD Anderson Sarcoma Clinic when there was a wait list to get into the Pediatric Clinic.  We probably wouldn't have gotten in as a straight admit/referral to them but we got into the adult Sarcoma clinic right away and Pedi was called to consult.  This allowed us to come in the back door, so to speak.
• Devon's best friend chose not to go, but heaven sent us another angel to share the burden and lighten the load in Whitney Roessler whose humor provided comical relief - a blessing I will always remember and cherish.
• MDA was one of the only hospitals doing arterial line chemo therapy right to the tumor, a technique started by our very knowledgeable and world renowned physician, Dr. Jaffe - blessings to have him and his expertise.
• A gift that we live only 4 hours away from this awesome Texas Medical Center which included the widely recognized MD Anderson Cancer Center.  (Although we followed at our local hospital for crisis intervention and lab work, they did not have the capability at the time to do the advanced procedures to both save her leg and run chemo through an arterial line.)
• My "sister and brother-in-law" lived in Houston (that's another story in itself of God's hand in my life - more on that later) - blessings to have them, their home, and their spiritual support throughout our never ending journey.
• Moving date came and we were moved by many co-workers and friends from Luther Jones Elementary and elsewhere.  They literally packed and moved us.  A neighbor, Sandy Destefano, ran the show at the house we were leaving and my mother ran the show at the house we were moving into - more blessings.
• Chemo was started and Devon was doing well.  Blessing.
• We had to navigate her school (needed special permission to stay in school with so many days going to be missed).  The Principal and Superintendent granted special permission and teachers agreed to help with course load.  Thanks to all....
• I had to navigate my work (many days were going to be missed but I  needed to keep the job for income and insurance benefits). Thanks to Galen Hoffstadt, my Principal for recommending using my sick days as half days to stretch my days and generally navigating the system for me when I couldn't think (you know "Galen" when scrambled spells angel). 
• Thanks to Jeanna Moravits, RN for covering for me during those days.  Thanks to my many Jones friends for bringing the family dinner, when we were in Houston or when we were home...dinner was served every Thursday night for a year by these kind and generous folks.  Blessings and kindness...
• The chemo continued and the tumor was dying, Devon continued to do well through December.
• January, 2004 - Devon's tumor was removed and an artificial knee (knee replacement) was put in (limb salvage).  We found that although the tumor had 94% necroses (killed), the 6% that was still alive and kicking were different cancer cells than the two that the first chemo killed.  Result: two new drugs and 12 more treatments were needed to make sure that any cells that metastasized to the lungs would be killed.  This was a major setback!  Where is God? (He's still there, in the details! Read on!)
• This is the part that reminds me of the story of the footprints on the sand http://llerrah.com/footprints.htm ....it got very tough for Devon and everyone and we wondered how, if all of these people from all over the world were praying for us, why didn't she get better, why was it soooo hard, and was it all worth it.   We were questioning if this drug path was necessary because as it was supposedly killing cancer cells we could NOT see, but it was killing her and THAT we could see!  But we also had a hard time seeing God and yet, I know he was there.  I never doubted his presence for a minute nor lost faith.  If I had an opportunity, I just would have argued his method and timing, and questioned his purpose (humor - always thinking of a better way!)   Before this, I had told many people that it was like someone was holding our hand and guiding us through every step of the way.  I'm sure, like the story, at that point he was carrying us.
• Beginning of the end - One night I had a feeling - mom's intuition - something was wrong.  Heart problems, then kidneys...story to come later.  Devon quit treatment in August with 4 treatments left; she couldn't do it anymore.  So fast forward through the stopping of all treatments and follow through the years in the coming stories.  I'll throw them in as I think of them.
• We met amazing, caring doctors, nurses, and staff who are still friends today: from MD Anderson - Dr. Jaffe, Dr. Peter Anderson, Peggy Pearson, Maritza, Dr. Joshua Samuels, Dr. Wagausbach, Dr. Patrick Lin, and from Moffitt Cancer Center in Tampa, Florida - Dr. Doug Letson, Dave Johnson, Jay Seletos, and Joni Stanton,

Her cancer story is hers....I can only tell you my take on it.  It has changed our lives forever in ways that we are only realizing today.  Something will come up, with one of the other kids, and it's clear it affected them, too, as much as we tried to keep the normalcy and shield them from the ongoing horror of a child in chemotherapy 230 miles away from home.  

My story is a story of caring for a child with cancer for 10 years (and still going) with its repercussions (side effects), and of being a wife, mother, daughter, sister, and friend.  I hope in my coming posts to reflect back on these pieces of "truths" in my life - my lived experience, as I incorporate how I feel God has guided us through, specifically me, through all of this "life".  I am reminded of one of my favorite songs by country artist, Darryl Worley, called Sounds Like Life to Me.  http://www.darrylworley.com/  Basically, the verses are about all the griping and complaining of a friend about the woes of his life, much like we all do sometimes - complain about the negative things that happen to us in our lives and his chorus is:

"Sounds like life to me it ain’t no fantasy
It’s just a common case of everyday reality
Man I know it’s tough but you gotta suck it up
To hear you talk you’re caught up in some tragedy
It sounds like life to me."

So again, if you're interested, feel free to read on.  I have been encouraged by friends to start to tell my story, that it may help others, and in my reading, I believe that it is important to share and witness when we think/know God has helped us. 

Three Wishes

Remember at the end of the movie, Under the Tuscan Sun, when the lead character says something like "its funny how life works out but not the way we planned" and her co-star says, " oh but I think it did."  He then proceeds to remind her that when he met her while selling her the house, she had three wishes for this house, to have love, a marriage, and start a family.  Of course she meant for herself and in her mind at that point, none of it had come true although she was happy.  However, what he saw was that her friend had come from America, had her baby, and stayed - a family was started.  They were talking at the reception, at her home, of her very dear friend that she "mothered" who just got married to a neighbor girl - a marriage. And finally, he walks away and she sits down on a patio chair exhausted from the days events, and a foreigner, a Canadian or an American, walks up to her and asks if she knows the owner of the house and a spark is lit - love.  The movie was based on a true story and I believe it demonstrates how often we overlook God in the details of our lives because he didn't answer our wishes or our prayers the way we intended.

This occurred to me today because as I was laying in bed this morning recounting my last few days, I realized three of my wishes may be coming true but not in the fashion I imagined.  I have been praying about how to help my mom with my dad who is moving into a very dependent stage of Alzheimer's.  They have been fiercely independent up to this point living in a rather large home with no help.  She maintains a volunteer position, book club and luncheons with friends, and is now learning to manage the house and responsibilities, including the bills, like many 1950's wives had to learn late in life.  We talked about moving in together, but the stress of my work, my daughter's ongoing health issues, and our financial instability seemed to not only prevent us from moving but also seemed to make my personal stress (and illness) even worse.  (I wish I could quit my job for awhile or reduce it to a very minimal part-time status and just stay home in order for me to recover from what the doctor is calling PTSD symptoms based on our past 10 years of high stress.)  In a similar prayer, I have been wanting to move out of this house.  (That's actually how the topic of moving in together came up - I was telling mom that we were considering moving.)  We moved here when my daughter was diagnosed with cancer, and for me, it will always be the cancer house.  The fact that its dark and older, doesn't help, and in fact, adds to the depressingly lengthy repair list.  This summer has been the worst drought and its taking a toll on everyone's housing structure.  Our house has large cracks in the walls both inside and out that will need fixed prior to a sale.  The list of repairs and cleaning that needs done prior to listing this house for sale is overwhelming.  The easiest way, if possible would be to move out, fix it, and then list it....who can look beyond the dining room table in our Master bedroom since we turned the dining room into our daughter's first floor bedroom?  As they say - "Its cheaper to keep her."  We decided to fix what we could, as we could, and pray for what we couldn't do such as rain to level us back out (which we got that week and doors that were shut were magically able to open and close again!)

God is a puzzle doer, as in he likes to piece together the jigsaw puzzles of our lives.  He has listened to my prayers, and many others, and pieces them together to help many.  I don't believe he inflicts pain and suffering or disease on his children but I do believe that when disease occurs, he will try to help.  I also believe you need to prayerfully ask for his intercession as he respects our freedom of choice.  Its been my experience that it doesn't always get answered on my time line, but we are living on God's time, and his time is perfect....one must be patient.  Nor does it always get answered the way I thought it should be answered, but again, if I'm patient, it seems his responses are much better than I thought.  So it goes with my three prayers or wishes.  On Monday, my mom called to tell me her Hematologist, told her that he suspects she has another blood disorder in addition to her current thrombocytosis or essential thrombocythemia - too many platelets.  She has too much protein in her blood and will need a bone marrow biopsy next Monday to rule out or confirm multiple myeloma - too many plasma cells.  She has been maintaining the other disease with a oral medication with very few side effects however, when reading up on this cancer, this one sounds like its the full deal - chemo, radiation, and possible bone marrow or stem cell transplant.  She will no longer be able to live 45 minutes from the doctors, drive herself, and take care of Dad and the home.  They must move and they must get help.

So back to the thought of moving in together.  We live in a two story home and have already converted the dining room into a bedroom for our daughter....not ideal, but it was a necessity.  In order to help mom and dad (wish one), we will need a new house - wish two - check and check.  And we will need to hire help or have her pay me (a nurse) to stay home - wish three - check.  I am scared to death that I can't do this both physically and emotionally.  Not only is there research out there that shows that nurses who care for family at home in addition to working die younger, I'm not working with a great gene pool here folks!  I'm a breast cancer survivor from my 40's, I had both maternal and paternal grandmothers have Alzheimer's or dementia at the very least, and I have my Dad's anxiety disorder.  So in addition to all that, I have never kept a clean enough house for my parents and now they are going to live in our house with me cleaning it!  I can cook but I get overwhelmed, like everyone some days, but my mom was Mrs. Cleaver who had everything prepared precisely at 5pm (without a microwave!) for my Dad to walk in the door and eat - table set with linens, at the very least placemats and I don't do that.  I don't want their last years to feel like a living hell (humor).  I know this is not what they will be worried about but it all adds stress.  However, I digress from the main issue....

God has a plan.  I believe he is answering my prayers to the benefit of my parents, my brother in Ohio (who won't have to worry), and to my family.  The only one who seems to get a bad deal in this is my husband (although they say you marry the family), who was with me in looking forward to a quiet house with our last child leaving for college next month.  No rest for the weary....we're the sandwich generation.  Fortunately, he is a hospice nurse whose skills may come in handy in the distant future.  May God bless him for being the Saint my mother (and his) always thought he was.  As it is, he IS a VERY caring, Christian man, who serves others....I needed him 36 years ago when I met him in high school and still do today - another of God's blessings in my life.