The Perks of Having a Heart Condition

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Anthony and I spent last week in Disney World with his family, pushing Rosie around the many parks in her stroller and watching as she happily bounced up and down and waved to different characters on all the rides. She especially loved It’s a Small Word (who doesn’t?), the Kilimanjaro Safari, and the Halloween parade.


As we made our way to Florida and then moved about the parks, I realized that even though having a heart condition can often be a really negative part of my life, there are some perks that I don’t mind enjoying. It’s always good to look on the bright side, right?

 

 

Four Perks of Having a Heart Condition:

  1. I don’t have to carry luggage (or anything else heavy) – Doctor’s orders: I can’t do any heavy lifting since it makes the heart work harder and can cause irregular heartbeats in people with a history of arrhythmia.  Thus, I don’t have to carry my luggage to the car or a large load of laundry up my basement steps. Sometimes, I can’t unload my Costco purchases by myself.  I’m lucky, of course, because I have a husband who always takes the burden of heavy lifting. And although sometimes it’s frustrating that I can’t do certain things without his help, it’s times like this when the poor thing is lugging the car seat and the Pack-n-Play through the entire airport, that I can’t really complain about this little perk.
  2. I get to take naps:  My tricuspid valve is currently leaking.  When a valve leaks, some blood flows back toward the heart rather than away from it.  As a result, less than the normal amount of blood is pumped into the rest of the body.  Since the body isn’t getting the proper amount of blood, it gets fatigued easily.  Also, each day I take 50 mg of a pure beta blocker and 240 mg of a drug that is partially made of a beta blocker.  Beta blockers block the effects of adrenaline in the body; this makes the heart beat more slowly and less forcefully, which lowers blood pressure.  My regular blood pressure is about 100/60, but can sometimes be more like 90/60.

    What all of that really means is that I’m tired. While there are days on which I’m probably tired like any other mother of a toddler, there are others when the fatigue becomes somewhat overwhelming, and I just really need a rest. These rests are even more important to me now as a mother because when I am awake, I want to have as much energy as possible in order to care for and play with my daughter.

    I’m a 30-year-old woman who can take naps without any judgement from others.  When I tell Anthony I need a rest, he lets me have one.  If my mother or sisters are over, I can tell them I need to go lay down for a while.  Most adults can’t get away with this behavior, but I can → Perk!

  3. Handicap Passes – This only applies when I am in some sort of amusement park, but it’s still a benefit of having a heart condition. We all know how long the lines are in Disney World, but for me the waits are rarely longer than 20 min. It may seem like I’m taking advantage of my situation, but I always tell the truth to get my pass. I don’t pretend I need a wheelchair or exaggerate my condition. I explain that I have congenital heart disease and apparently Walt Disney agrees that that warrants a handicap pass. 

    I travel to Disney often between my family, Anthony’s, and my cheerleading team who competes there.  Depending on the time and the weather, I really do need the pass at times.  After walking through the park to get to a ride, I sometimes need to enter as soon as possible to rest in the air conditioning or just sit down, even if I’m sitting in the dune buggy of the Haunted Mansion.

  4. It’s only a heart condition – I’m not going to lie.  I’ve had some pretty difficult times because of my heart disease, emotionally and physically.  But when you’re in a place like Disney World with so many different people and you see the physical hardships that some must face, when you hear of women your age and younger whose diseases are terminal, or about someone’s child’s negative prognosis, you realize that things could always be so much worse.  Even though there have been days on which I resent this deformed heart of mine, even though there will be days in the future on which I hate having this condition, today I am grateful that it’s all I have.


All the Right Words

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I’ll admit it.  At times I find society’s insistence on politically correct language to be a bit over the top.  Of course, there are words that harbor severely negative connotations that should never be used, but there are also P.C. terms at which I can’t help but roll my eyes.  One that comes to mind is domestic engineer.  Really?  This is a role I happen to fill, but I find no need to use such an arrogant title.  Stay-at-home mother is fine with me.

Like I said, though, there is some terminology that I truly believe is offensive and when I began learning more about adoption and especially once I adopted Rosie, I realized there are several words or phrases that just shouldn’t be used to talk about her and how she came to us.

Language used to discuss adoption should be positive, not negative.  Because for adoptive families, adoption is a good thing, a great thing, a phenomenally amazing thing, not a negative one.  And we want our children to not only know that from what we tell them, but to feel and sense it based on the words we use to tell them.

I know most people do not mean any harm when they use the following words and phrases.  Before I knew any better, I would use some of them too, and I can’t expect people to avoid negative adoption language if they don’t know it’s negative in the first place.

So, I thought I’d share some of what I learned on this subject and spread the word as far as possible.

  1. Is adopted – An adoptee needs to understand and believe that his life with his adoptive family is permanent.  To say a person “is adopted” implies that the adoption is an ongoing event.  In contrast, an adoption occurs at a certain time and then it is over.  The adoptee joins his family and remains there…forever.  Rosie is not adopted.  She was adopted last year.  Now, she is just our daughter.
  2. Positive Alternative:  was adopted

  3. Real mother/father to refer to an adoptee’s biological parents – People often ask me “What happened to her real mother?” or “Where are her real parents?” And even though I know they don’t mean to insult me, this one does get under my skin.  Last I checked I am real.  And I am Rosie’s mother.  It logically follows, then, that I am her real mother.  I really feed her and bathe her; I really dress her and comb her hair.  I really comfort her when she cries and rock her before she goes to sleep.  It all feels pretty real to me.
  4. Beyond my aggravation, though, is the idea that an adoptee should not feel that his adoptive mother is not his real mother.  Referring to another woman as the real mother only implies that the woman he knows as his mother is not real or permanent.

    Positive Alternatives:  birthmother/father, bio mom/dad, biological mother/father

  5. Give away/give up baby for adoption: Why would an adoptee want to feel that his birthmother gave him up? I do not know much about the adoption world of the past in which this terminology came into use, but I do know that today the typical birthmother is in her 20s or 30s; she has other children whom she parents but financially she cannot parent another child. Statistically, then, most birthmothers choose adoption because it is the best they can do for their children. It is sometimes the only way that those children can have stable lives. They are not simply giving away their children. They are selflessly choosing their children’s well being above all else and that is what an adoptee should understand.
  6. Positive Alternative: place child for adoption, make an adoption plan for child

  7. Own child/baby when referring to a biological child in contrast to an adoptee:  “Why couldn’t you have your own children?” some have asked me.  I know I do not have biological children, so people may say I cannot say this unequivocally.  But I cannot imagine how anything or anyone could ever feel more like my own than Rosie does.  In the first hours I knew her, as I fed her, changed her diaper, and soothed her to sleep, my hands simply knew how to touch her.  I had never felt so comfortable with an infant before.  And this connection has only grown in the past year.  I know her cry that means pain and the one that just means she is angry.  I know when she is hungry or when she just wants some juice.  I can tell if she will fall asleep by the way she sits in her stroller.  Like any other mother and daughter, I know her through and through.  She is my own in every way.

Well, those are some examples of P.C. adoption terms.
No more excuses, people. Now you know. ; )


Good Night, Sweetheart

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At home, Rosie is very easy to put to bed. A five-minute routine is all it takes for her to settle into a 10-11 hour sleep overnight.  And, yet, when we are away from home, bedtime is an hour or more filled with screams, tears, extended lullabies, rocking and soothing touches.  Sometimes, I wonder if this great difference in bedtime behavior is a result of Rosie’s experience of being adopted as an infant.

Sleeping Rosie

At about 9:00 each night, I sit in the velour glider in the corner of Rosie’s room, read her a book and sing “Baby Mine” before she happily curls up in her crib to go to sleep.  Of course, she does need her binky and some background music but, still, it is a quick and easy process.  And during the day, she has always been able to fall asleep pretty much anywhere in the house. And I mean anywhere:

Her highchair                                                           The floor

        

The Exersaucer                                                        A crowded Pack-n-Play

                         

(By the way, I don’t leave her to fall asleep in uncomfortable places as often as it seems.)

But despite the fact that she so easily falls asleep at home, when we travel, putting her to sleep is a trying battle.  The moment I lay her in a crib that is not her own, she screams at a decibel that can no doubt be heard four hotel rooms down.  Now that she is able to, she will pull herself to standing and try to climb out of the crib as she grips the metal bar with white knuckles and tears pour down her bright red face.

I can’t understand this drastic change of behavior.  I mimic our bedtime routine perfectly.  I pack a book and her music maker (as we call it).  I sing “Baby Mine” just as I do at home.  But no matter what, the second any part of her touches that mattress, the screams begin.  The last time we went away, I had to sing “Baby Mine” for 45 minutes straight while rubbing her back continuously for her to finally doze off.

Believe me, I’m not complaining.  I know there are parents who deal with far worse sleeping habits than this on a nightly basis.  I am just questioning the difference in behavior and the fact that I have one daughter to put to sleep at home and a completely different child to lay down at night when traveling.

Baby’s Beginnings

When a child is not adopted, his sleeping habitats follow a pretty standard path:

WOMB → HOSPITAL BASSINET → BASSINET AT HOME.

Of course, months down the line, this baby would be moved to his crib if that is not done from the get-go.

For an adopted child like Rosie, the path is often different:

WOMB → HOSPITAL BASSINET → BASSINET AT HOTEL → BASSINET AT HOME

                       

So, it seems that there is only one extra stop on Rosemarie’s path and, therefore, you could argue that there is no real difference that could possibly affect her sleeping habits.  I would like to point, however, that for a child who is not adopted, after he emerges from his birthmother’s womb, he returns to her arms on a regular basis in the days, weeks, and months that follow.  But like other adopted children, Rosemarie went from her birthmother’s womb to the arms of several nurses and then over 24 hours later to the arms that would be permanent in her life, mine.

That is where I see a difference in her experience.  And sometimes I wonder if that day and a half in which she had no sense of permanence is the reason she acts so desperate and frightened when she needs to sleep somewhere other than home.

Is it possible that a change of sleeping habitat reminds her of those first 36 hours?

Is it possible that a new crib in a new place triggers a fear of things changing again?

The Wound

I know some of you may be thinking that those questions I raised above are not nonsensical.  I know it seems impossible that Rosie can even remember her first few days and, therefore, cannot possibly be affected by them emotionally. There are experts, however, who claim that babies do indeed remember their very first hours even if they don’t realize that they do.  In Babies Remember Birth, David Chamberlain asserts that his title is true and that “[b]abies know more than they are supposed to know.  Minutes after birth, a baby can pick out his mother’s face–which he has never seen–from a gallery of photos.”

Last November I attended the Adoptive Parents Committee’s annual Adoption Conference.  During a workshop on raising adopted children, I heard the term “the primal wound,” which was coined by Nancy Verrier, a clinical psychologist.  The three-word term is also the title of a book by Verrier and refers to the subconscious wound left on a baby who is separated from his biological mother after birth.

I ordered the book the following day.  I have not read it yet.  I have no idea if what it contains is brilliant or ridiculous, but if Verrier’s theory is true and if my daughter was “wounded” at the time of her birth, then perhaps there is a connection between her being adopted and the great difficulty she has sleeping in an unknown place.

I don’t know.  I am not an adoptee or a psychologist, and I’ve only been a mother for a year, but I think I owe it to Rosie to at least pay attention.

So for now, when we are away from home, I will soothe her for as long as she needs at bedtime.  I will rub her back and sing her a lullaby and make sure she can fall asleep knowing I am near and that I’m not going anywhere.

What do you think?

Adoptive mothers, do you have children who struggle to fall asleep when away from home?

Adoptees, do you believe the primal wound exists?

 

 

 

 


Would I have the Heart?

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Four years ago, when Anthony and I began to really discuss having children, the big question that needed to be answered was whether or not my heart would be strong enough to withstand the stress of a pregnancy.  Although many women with congenital heart disease successfully carry babies, we spoke to my cardiologist to weigh the risks, which were the same for me as they are for others like me:

  • During pregnancy, the heart must beat faster and stronger to support the fetus growing below it, which puts an extra strain on the heart.  For a person with congenital heart disease, this strain could mean damage to a heart that is already not entirely healthy.  Any surgery the patient may have needed in the future may be needed sooner.
  • Because of hormone changes and other factors of pregnancy, the likelihood of the heart entering an arrhythmia (irregular heartbeats) becomes higher for any woman. The probability increases more if one has a history of arrhythmia, which is a common occurrence in congenital heart disease patients.
  • Many women with congenital heart disease take medications that can be harmful to a fetus.  Before becoming pregnant, then, one must come off these medications and her body must adjust to new ones.

These were just some of the risks explained to me and Anthony.  The way we saw it:  my heart may have been strong enough to endure a pregnancy, but we didn’t want that pregnancy to mean any further health issues for me that would keep me from caring for and raising the baby that came out of it.

So we would adopt.  But even though I knew my heart wouldn’t be put under physical strain this way, I still worried about its capabilities.  As many hopeful adoptive mothers wonder, I asked myself, “Could I love a baby that wasn’t biologically mine?”

During the fourteen months in which we waited to find our baby, I tested myself whenever I could.  When my best friend gave birth to her daughter, I stood at the hospital window studying the sleeping bundles behind the glass: one boy with messy reddish hair and chubby cheeks, a tiny mocha-skinned girl with long eyelashes.  I looked at each of their brand new faces, and asked “Could I love him? Or her? What about that one over there?” Although I thought the answer was yes, I still wasn’t sure.

When we flew to Georgia to meet a prospective birthmother, whose child we did not ultimately adopt, we met her other children.  The youngest was a one-and-half-year-old girl with white blonde hair, tiny teeth, and blue eyes.  We took a picture; I stood next Anthony as he held her on his hip. Once we were home, I stared at the picture daily.  “What if this was our baby?” I thought.  “Would I love her enough?”

I read adoption magazines, forums, and books during those fourteen months too.  When they each assured me that I would indeed love my baby, I sighed deeply and closed my eyes in relief.  But I still wasn’t sure.

 

I still wasn’t sure when the phone rang hours after Rosemarie was born.  I wasn’t sure as our plane landed and during the drive to the hospital.

 

 

Even when we entered the Labor and Delivery Ward and the nurses yelled, “Mommy and Daddy are here!”, I still wasn’t sure.  I wasn’t even sure the first time I laid eyes on her, on her tiny 5 lb. body in a pink stretchy covered in elephants.  I felt warmth, relief, excitement, but did I feel love?

A half hour later, the nurses led us to our own hospital room and wheeled Rosemarie’s bassinet in behind us.  For the next few hours, we were alone with her.  We changed her diapers; we fed her a tiny bottle of formula.  We tapped her back gently after each 1/2 ounce. When darkness fell, we put her in the bassinet to wheel her back to the nursery.

                                       

My socked feet soundlessly stepped forward with my hands on the rim of her clear bassinet.  I pushed her through the door of our room and entered the hallway.  And there it was.  Suddenly and overwhelmingly.  I couldn’t be more sure.  I loved her.

My heart, the one I had doubted, ached with the thought of leaving her, not knowing if she was definitely going to be mine.  It ached with the love I didn’t know I could feel.

Did I have the heart? The answer was a resounding YES! A yes that should be screamed from a mountaintop while trumpets blow, and confetti falls, and maybe even some angels sing.

My heart could love her.  I could love her.  I do love her and I always will.