The toughest job in the world…

I’ve heard it said that the toughest job in the world is that of a mother.

I wholeheartedly agree!

Last Monday I revised that statement to read:

The toughest job in the world….for me…. is being LUKE’S mother.

It’s not because Luke is so hard to take care of or deal with. He is a sweet sweet boy!!! It is because Luke’s special needs make me acutely aware of how pivotal each and every decision I make for him is. And it can be exhausting.

Let me backtrack just a tad bit. For those who don’t know, Luke was adopted from China in May 2007.

His listed SN was cleft lip and palate.

Here is our “special needs” reality:
-Cleft lip and palate III degree
-Plagiocephaly (flat cylinder shaped head from lying in a crib 24 hours a day)
-Hypoplasia of the corpus callosum (brain abnormality)
-Growth hormone deficiency
-Strabismus ~ both eyes (lazy eyes)
-Amblyopia ~both eyes (The brain does not fully acknowledge the images seen by the affected eyes)
-Autistic-like behaviors
-Dental issues (I didn’t even KNOW that baby teeth could be crowned!)
-Gross developmental delays in both cognitive, fine motor and speech.

And folks… that’s just what I have been able to discover. I still have a gut feeling that there is MORE.

So, given what is laid out before me, every decision I make, every doctor, therapist or educator we chose to work with, every classroom placement, daycare setting, medical testing, IEP wording… to me it seems every decision always bears this huge weight.

I find myself asking “AM I making the right decision? Is this decision going to help him get to where he needs to be? Are these people trying to be a help to us or just trying to push him through the system?”

My end goal is to do everything in the world for this boy so that when he becomes an adult he can live a full, healthy independent life. He lost 2 years in the orphanage so I feel like I have to fight twice as hard for him now.

I am constantly looking for allies in this journey. The only ones we have found are the families in the trenches with us that are fighting the same fight. Where are all the professionals giving skilled advice? From day 1 we have had really bad luck finding doctors that are willing to work with Luke. They are sure “interested” in him…. like they would be interested in a lab rat. Luke is a “very interesting case” I have been told over and over. However they offer us no assistance in navigating this road.

Just to give you an idea… here is Luke’s “Roll Call of Doctors” (as we like to call it).

2 neurologists: #1 told us that there was nothing wrong with Luke, #2 made us BEG for 9 months for an MRI which ended up proving he had a brain abnormality. This is after Luke had an abnormal EEG which she said she thought was INCORRECT.

1 geneticist: This is the doctor that granted us the MRI. LOVELY LADY but not a full time doctor for Luke since he has no genetic issues.

3 ophthalmologists: #1 told us to wait for the “eye fairy” to fix Luke’s eyes… and he was serious when he said it, #2 wanted to take measurements of Luke’s eyes for the next 2 YEARS to see if is eye issues resolved, #3… his motto is “measure twice, cut once”…. He wants to fix Luke’s eyes and he realizes the eye fairy AND/OR time is not going to resolve Luke’s issues.

4 pediatric dentists: #1 ~~~what is the deal with Children’s Hospital only taking MEDICAID for oral surgery! #2 didn’t want to work with Luke because he has developmental delays #3 didn’t want to work with Luke because he has a fistula in his cleft palate #4 is a lovely young woman who is trying her darndest to find an anesthesiologist who will put Luke under General Anesthesia for 2 back teeth to be crowned and 2 front teeth to be extracted.

3 pediatricians: #1 asked us directly WHY we adopted him ~ as in "lady, this is your own fault since you adopted a special needs kid"~… ummm… nice knowing you…bye bye now! #2 fought me for every test I wanted to get Luke even though his developmental delay diagnosis would cover the tests #3…. He's new and we are praying for a great experience.

1 endocrinologist ~ diagnosed his growth hormone deficiency right away and ordered additional testing.

2 cleft teams : #1 although the plastic surgeon is fantastic… the rest of the team was horrible. Case in point.. We showed up for surgery to have Luke’s uvula repaired and the intake nurse tells us we are there for a cleft palate repair. We say that we aren’t and that it is already repaired. She does not believe us and gives us overnight parking passes and additional insurance paperwork. We reiterate that his palate is already repaired and we flip him upside down to show her the inside of his mouth. She doesn’t relent! The paperwork states PALATE REPAIR so that’s what she’s going with! All day we battle this. He has his uvula repaired and we come home a few hours later. We get the bill from the hospital… know what they charged us for… wait for it… here it goes..… PALATE REPAIR!!! #2 is the plastic surgeon we changed to who also has experience removing NEVUS. GOD IS GOOD!

2 ENTs: #1 Part of the original cleft team who did Luke’s first set of tubes. She didn’t even take the time to meet with us after his surgery #2 did Luke’s new ear tubes in March. Everything is going well so far.


I guess I just cannot relax; I cannot stop weighing all the options, sifting through all of the choices and wondering if I am doing MY BEST for this boy. Wondering if the decisions I am making have the most positive impact on him. So right now…. The toughest job in the world… is being Luke’s mother.

Even though it’s the toughest job right now and maybe for a long long time… I think back to that day in the Civil Affairs office when we official adopted him. When we told them we would love him and care for him, provide medical care and education and then we signed on the dotted line….

I meant what I said and I said what I meant….and this momma is faithful 100%.
-Adapted from Horton Hears a Who which we have watched 20 times this weekend!