Those Baby Blues: Focused on Grace


Eye Accessories are all the Rage? Didn’t you know?

We went for Grady’s Initial Eye Evaluation yesterday. Grady’s eyes are absolutely my favorite part of his beautiful face and any chance I get to photograph them just steals my heart. As one friend said it “They are like windows to the world”

Grace is moving within me for sure as we ventured through the appointment, from start to finish.  No fear, no anxiousness and my blood never reached boiling point, when usually it would. Grace.

Phil 4: 6-7

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

They diagnosed him with Far Sighted-ness, Strabismus & Astigmatism with a re-check in 6 months:

Strabismus- (eye misalignment) is also more common. Family members may notice that the eyes do not line up well with each other, but often the strabismus can be subtle, even to the pediatrician. The folds of skin I mentioned between the eyes and the nose can also cover up the underlying strabismus, or make the eyes appear as if they are crossing even if they are not. It is important to diagnose strabismus as a child, as crossed eyes can result in amblyopia (loss of vision also known as lazy eye) and loss of stereopsis (the use of the two eyes together, or depth perception).
LONG-SIGHTEDNESS (HYPERMETROPIA)-About 40% of pre-school children with Down’s syndrome are long-sighted. This is often associated with a convergent squint. These children have to use extra effort to focus their eyes and this is more of a problem for close vision.ASTIGMATISM –About 30% of pre-school children with Down’s syndrome have astigmatism. This means that the image seen is distorted because the image is more out of focus in one direction than the other. The astigmatism can be either long-sighted or short-sighted or a mixture of the two.

The Kicker-  Insert Grace here.

I asked a few questions, mainly for curisotiy purposes and the fact that I am so new to the world of eye accesories that I may have come off naive on the whole topic. I continued to ask the eye doctor if Grady is a candidate for Contact Lenses: She said ..No, typically children and adults with Down Syndrome are unable to keep up with the responsibility of cleaning them, eye drops ect…

Then I asked, if Grady can someday get eye corrective surgery when he is older so he doesn’t have to wear glasses? She said … Usually with Down Syndrome, especially boys, they just don’t care enough to think about getting the surgery, these things don’t matter to them… then to top it off she told me …Plus they can’t take care of themselves after the surgery, eye dropss, eye patch and regular after surgery care..

I was calmly ready for the debate, I didn’t have to roll up my sleeves or anything, but I was ready to tackle her comments. She pretty much threw us in a “Disabled Box”… Yes, I am realistic about eventual delays..yaddah yaddah yaddah. Please don’t go discounting my son’s future desires and wishes or my own for him.

Amazingly my blood didn’t boil and that is by God’s Grace alone, I gracefully responded to her remarks and “facts” with … I guess you really don’t know though do you? she repeated what I said back to me agreeing, and realized that she opened a can of worms and quickly exited the room.

Dear Grady,

Today we learned that there is a good chance you will be wearing glasses in a few short years.  And if someday those glasses get in your way when your competiting in the Special Olympics…or you want to go on a Hot Date and don’t want to wear them any longer, or if the get in your way when you want to lay a kiss on that pretty lady…we won’t let anyone tell us you don’t have the ability to care because if you do,  WE will find a way.

If that way is corrective surgery, I will take care of you afterwards, I will put those drops in your eyes…I will do anything possible to help you in this journey we call life. The “Ski’s” the limit little man.

Meanwhile,  I can’t wait to see you in those glasses. You are going to look adorable. When I was younger I wanted to wear glasses sooo bad, so now I have just one more reason to live vicariously through you. It’s a good thing.

I love you,

Mommy


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14 thoughts on “Those Baby Blues: Focused on Grace

  1. Audrey says:

    I can’t believe the doctor responded that way to your questions! grrrr!

    Grady is going to be such a little stud muffin with those glasses, cant wait to see them on him! 🙂

  2. Melissa says:

    I HATED my glasses when I was younger and couldn’t wait to get contacts, then the surgery. While I think little ones in glasses are super cute, I hope Claire doesn’t need them (she is a little far sighted) just because I didn’t like them. I hope she got her daddy’s super eyes instead of my bad ones. 🙂

  3. Adrienne says:

    He will look adorable with those glasses! And don’t let any doctor tell you what will be or what won’t be! If the surgery is possible and you think he’ll do better with that than don’t let anyone tell you he can’t get it!

    And this is a big deal because it’s about your Grady and something different for your family, so blog away baby!

  4. Laura Kraengel says:

    I hate when Dr. say that THEY can’t take care of the things that need to be taken care of drops bandages ect.. you would think Dr’s would be more educated on what early intervention for our children. It is unfortunate that people look at DS as a disease or as a curse. My little peanut is doing great and I give credit to his theropists and my wife and me who put in the time and energy but most importantly never treated him any different than his brother though it might(might is the key word) take him longer to reach his goals HE WILL REACH HI GOALS. good luck with your glasses Grady see you at the olympics. and don’t waste any energy on negitivity.
    Your DS family
    Chris

  5. Courtney B says:

    This entire post is just proof (again) why you should be and always will be Grady’s mom. You love your child. Your child is NOT disabled but different. I am currently in grad school and cannot stand when people call special ed candidates disabled. That drives me insane, he is just as able to do anything as you or I…he just may need to do it differently or with more effort. Ugh, ignorance is NOT bliss.

  6. Christie says:

    Erin……poo on this doctor! Most all kids at this age are far-sighted and MANY outgrow it. This is perfectly normal. Now, the strabismus is something to keep an eye on…I know we have struggled with this for Jared since birth and he is now 8. Astigmatism is quite common too and more often than not will correct itself when dx’d at this early age. The eyes are still developing. Find a new eye doctor, this gal is off her rocker and obviously does not know squat about kids with Ds.

  7. Kayla says:

    So glad God gave you grace…I don’t know if I would’ve been able to stay as calm as you. I need to pray for grace. You’re right, that doctor doesn’t know if Grady will or will not care about glasses and want contacts or corrective surgery….maybe he will and maybe he won’t? Either way, he should have the option. If we can teach our children to bathe themselves…I don’t see why we couldn’t teach them about contacts or help them through the recovery of corrective surgery. I love the letter you wrote to Grady…so beautiful. I think he’s going to look so cute in glasses. His blue eyes are stunningly gorgeous…they’re truly soulful.

  8. Heidi says:

    If this was a pediatric ophthalmologist that you visited, then how did she have so much information about adults with Down Syndrome? She probably has met very few or she may not know any adult persons with Down Syndrome. She was probably just talking about stereotypes that came to her mind, not out of any expertise in that area (not of course to discount or disrespect her actual area of expertise). Fortunately, Grady is really young and there are several more follow up visits before any decisions have to be made. I’m confident that you and Paul will make the best choices for all of his medical care. I think I’ve mentioned before, but our pediatric ophthalmologist, Dr. Afran, is wonderful, if you are looking for a second opinion.

  9. Jennifer says:

    Amen sister! I’m so happy that you were able to stay in Grace during that appointment- it has got to be VERY difficult in the face of that sort of negativity and ignorance! I am going to carry this theme into our pediatric opthamology appointment this week! (I’m nervous, because I know there are some issues, but am hoping that the doctor is compassionate and thorough.)

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