Thursday, March 19, 2015

More Than a Cleft

Our daughter has a cleft lip and palate (and upon further investigation it sounds like she might actually have a "double" cleft).  There is no mistaking it or overlooking it.  But she is so much more than that.  Yes, she has a medical need and yes, we are in the process of addressing all of it, but there is so much more than what is presented at surface value.  She has a mind.  She has a heart.  She has a personality and brokenness that runs deeper than what meets the eye.

Today was a hard day for me.  It was difficult for Hannah in some ways too, but today was especially hard for me...for the adoptive mama of a baby with a cleft lip and palate.

We have gotten out of our cocoon a couple times this past week and each time we have gone out, I have overheard inquisitive children pointing out Hannah's obvious cleft to their mothers.  One said, "Mama, that girl lost her lip!!"  Another said, "So sometimes people can have broken lips?"  These comments didn't bother me.  I would much rather people ask about it and talk about it over trying to ignore the enormous elephant in the room.  I am okay with that; being in public and people asking questions or commenting.  It is normal and okay.  I understand her cleft isn't something you see everyday and there will be questions as a result.

I have not, however, been prepared for the response in the medical community.  We have seen three doctors since coming home with Hannah.  I have been saddened by their inability to look past her cleft and look deeper at some of the more significant needs and issues that are hiding behind the cleft.  Sweet doctors, I am so thankful for you.  Really, I am.  You are going to give our daughter a life she never could have had in China and you are going to pour your sweat and energy into reconstructing her palate and face so she can speak with confidence and feel good about the precious girl looking back at her in the mirror.  Don't get me wrong.  I am very thankful for you and for all that you are about to endeavor to do for our child.  I could not provide a full, healthy life for her were it not for you.  But let this adoptive cleft mama say one thing,
"Yes, my daughter has a cleft lip and palate.  Yes, it needs addressing.  But please...just please, take one moment and look beyond that.  She is more than "just" a cleft."

Each doctor we have seen has been so immensely focused on repairing her cleft it has been overwhelming.  Don't get me wrong.  I get it!  I see the need and understand all too well the speech delays that will come as a result of prolonging her life without the repair.  However, I also have the social worker heart and mind within me and there is so much more going on.  Yes, she is a medical need, but she is more than "just" her medical need.  Wonderful, wise, educated doctors, please...learn a thing or two about adopted, fostered, abandoned, traumatized kids from hard places.  Yes, her medical need requires repair, but so does her heart.  Please, please stop for one moment during an exam and ask me about her heart.  How is she adjusting?  What is her trust like?  Is she bonded to you?  Do you feel bonded to her?  Does she seem to feel safe or secure?  Then, in all that, please take a moment and ask me how I, the adoptive mama think (or worry or have concerns) about how the suggested treatment might impact those things for her.  Will it reopen wounds of trauma?  Is it too soon?  Does the benefit of the treatment now outweigh the risk for damaging or setting back the bonding process?  These are not things doctors typically need to think about or discuss with patients, but when it comes to the adoptive parent and child, they are considerably real factors in the decision making process.  Each doctor I have met with has rushed past this.  Not one real look at her heart or emotional needs.  Each doctor has been an expert in his or her field and left me feeling completely impressed and trusting of them and their knowledge, however, they each see the need in their particular realm of specialty as the most pressing need.  They all seem to think their medical need is most urgent.  Must treat it now.  Must correct it now.  But really, is there harm in pacing ourselves?  One thing is for sure, each doctor I have seen has immediately commented that nutrition is not an issue for our girl.  She eats and eats well despite her physical limitations.  Please, amazingly smart doctors, give me the information I need to make a wise, prayerful decision for our daughter.  Tell me the truth about her medical need.  Be a straight shooter about how urgent it truly is, but then take a moment to help me balance that urgency with the urgency to gain her trust and faith in me as her mother.

Today I took Hannah to see an ENT.  I was not prepared for this appointment.  At all.  I was not prepared for the sense of urgency that came from it, nor for how desperately confused I would feel after it.  I truly thought we were going to just go, check her ears for infection, discuss the possibility of tubes, and move forward.  But then there it was.  The urgency.  This need is greatest, most urgent.  I really liked the doctor a great deal and loved how he interacted with both me and Hannah, but yet, that inability to get past the surface level need was ever present and it left me feeling like I wanted a second opinion.  I think I am facing a major wake up call and a tough blow about the medical field.  Doctors are just not really very educated about adoption or the sensitive needs of an adopted child that makes all medical procedures far more traumatizing and difficult than it would be with your "typical" child.  This is hard for me.  Hard for me to be comfortable with.

Today was also hard for me because I took Hannah to a new doctor.  New doctors mean there are new forms to complete.  I also received an additional set of forms in the mail to complete for a doctor we are taking her to see next week.  I knew I would never know a lot about Hannah prior to her arrival in our family seven weeks ago.  I knew it would be difficult.  I was not prepared for just how hard it would be to to take a virtually blank medical history form back to a receptionist and whisper through the child is adopted and I do not know her medical history or the history of her biological family.  I am sorry, but I cannot complete anything on this form.  I do not know if her mother had cancer or if her grandfather had kidney issues.  I do not know if there is a history of asthma.  I do not know if she has allergies to medications, environmental allergens, or latex.  She is a mystery and I am so sorry, but this form is blank because I just do not know.  This is hard.  As mothers we know everything about our children.  We rattle off schedules and foods they like and what makes them tick.  Truth be told, I am still very much in the stages of figuring this out.  I honestly don't even know what her favorite foods are because she eats everything I put in front of her right now because she is afraid I may not feed her tomorrow.

All this makes me stop and think about how Jesus sees us and how He could see us.  He could see only our problem, the ugly scars and oozing scabs of sin.  But He sees so much more.  He sees our heart.  He looks past our need, yes, an urgent need and looks at the heart.  He starts in the heart and tenderly begins working away at the outward, ugly need to find a solution for our sin problem.  I am so thankful He sees me beyond my urgent medical need.  He sees beyond my sin and looks at my heart and transforms me from my heart outwardly. 

So, thank you amazing doctors for providing healing for our daughter in the days and weeks and months and years to come, but would you please stop just once and look at her?  Really look at her?  She is more than just a cleft.

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