What Defines my Daughters: Dealing with a Diagnosis

I always knew my children were special, but I did not expect for them to have special needs. Prematurity, Hypotonia, Global Developmental Delay, and Sensory Processing Disorder, are all diagnoses that have been assigned to my daughters.

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Deb Evans Photography

Lani and Libby were born at 32 weeks, and have faced challenge after challenge ever since. Here is a peek at what is currently going on in their lives, and what all of this means for our future.

Diagnoses Central

Lani and Libby are still under 2 years old, so there is still much we do not know about what may be going on with them. What we do know is that early intervention matters.

Hypotonia

IMG_8279We can control how strong or weak our muscles are by exercising. What is entirely out of our control though is muscle tone. 

Muscle tone is what you’re born with, and it is basically how responsive your muscles are to your brain.

Hypotonia, LOW-tone, means your muscles and brain take longer to communicate.

Lani has Hypotonia of the Lower Extremities, while Libby has Global Hypotonia (full body). Here is a post that goes into more detail about Hypotonia: Becoming Princesses

Hypotonia isn’t something you “grow out of,” but that does not mean our twins cannot thrive. Both girls wear Surestep SMO’s to protect their ankles and reduce falling. Lani wears derotation straps to keep her legs rotated correctly, and Libby wears an abdominal brace for core support.

Global Developmental Delay

GDD is a fancy way of saying that a child is significantly delayed in more than one area. Both girls have been tested in multiple skill areas to help identify which therapies they need to receive. They currently receive Speech, Occupational Therapy, Physical Therapy, Aquatic Therapy, and Medical Nutrition Therapy. 

Sensory Processing Disorder
Difference

SPD is a diagnoses that is given when someone’s brain interprets different senses in either a more heightened or dampened way.

Typically, you can take in the world around you without feeling completely overwhelmed or entirely unaffected. That is not the case for someone with Sensory Processing Disorder.

You will notice that I changed what the “D” stands for in SPD. I did this because right after we received Libby’s diagnoses, a dear friend of mine spoke life into my heart.

She asked my permission to not use the term “disorder,” because that implies something is wrong. 

Libby just sees the world differently, and that’s because God wants to use her to teach us all something remarkable.

This leads me to my next and final thought, what actually defines my daughters?

Fearfully and Wonderfully Made

Our weeks are full of shuffling from one therapy appointment to another. My daughters have more medical specialists than they do friends.  Instead of just letting them play, we have to actively teach them how to play with things appropriately. There is no “break” or rest time for us as parents, because most things do not come “naturally” for them.

I found myself intensely studying Google and articles trying to learn more about my daughters and how to help them, when it hit me quite suddenly…

Look to GOD more than Google for answers.

I opened my Bible to the story of Jesus coming across a man blind from birth. People questioned “whose fault it was” that he was blind.

Christ’s answer floored me…

….but this happened so that the works of God might be displayed in (her)

John 9:3b (pronoun changed by me) 

What defines Lani and Libby are not their diagnoses, their skill levels, or their therapy schedules. I also simply cannot answer the infamous “Will they ever be able to…” questions. Want to know why?

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Ashleigh Jameson Photography

You may hear “special needs,” but all I see is a mega-phone for proclaiming God’s majesty.

The question itself is wrong.

The question is no longer WHAT defines my daughters, but WHO defines my daughters. 

Those who look to him are radiant with joy; their faces will never be ashamed.

Psalm 34:5

Ashleigh Jameson Photography