The Right Words

A friend and I were talking the other day and she told me how much she likes this blog.  Then she asked me if I could write a post about the things I wish people wouldn't say to me as a special needs mom and the things I wish they would say.  And the truth is, I've thought about writing a blog like that for awhile now.  But the reason I haven't is because I know that most people who ask about Ellie or make a comment about her actually have their hearts in the right place.  They are curious or concerned or want to offer words of encouragement but they just don't know what to say and end up saying the wrong thing.

And truthfully, I feel like I do this all the time myself.  I mean one thing but it just doesn't come out right.  So I can absolutely relate to this feeling of concern that someone would have in fearing they will say the wrong thing.  But the truth is, I would rather someone ask something in the wrong way then to not ask at all.  I do, at times, feel like people avoid us or avoid asking about Ellie because they don't know what to say.  Here's the thing though, all moms like to talk about their kids.  And all moms are proud of their kids.  Moms of special needs kids are no different.  In fact a lot of moms of special needs kids have amazing stories to tell and if you don't ask you might miss out on the opportunity to hear about a real life miracle that's right before your eyes.

With that being said, there are certain thing that I do like hearing more than others.  And while Ellie doesn't seem to pay much attention to what adults are talking about, eventually she will and she is a person with feelings just like the rest of us. So the following are some of the things people have said to me that I'm not especially crazy about and examples of things I really like hearing.  I will note that these are just my own personal preferences and so I can't speak for other parents of special needs children.
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1.  I'm not a big fan of questions or comments that use the word "normal".  For example, "I hope she gets back to normal soon" or "Do they expect her speech, cognition, hand use, etc to one day be normal?"  The questions and comments aren't wrong in themselves but when you throw the word "normal" in there, it gives me a sense that you think my child is something other than normal and to our family, Ellie is just as normal as everyone else.  I won't really expand on this because I already did in a previous blog post.

What I would rather hear instead:

"I'm still praying for Ellie."  I love this one.  If you could say one thing to me that would mean the most, it's this.  I believe in the power of prayers and to know you are still praying for my daughter means the world to me.

"What do her doctors think about her speech, cognition, hand use, etc?"  See, you don't have to use the word "normal" and by asking the questions, I know you care about my daughter.  It doesn't bother me one bit to talk about.

2.  "She's going to be just fine."  There's a mom I know who likes to say this to me.  I know she means well.  But I have noticed when she thinks something is wrong with her daughter, she doesn't say this.  When something is wrong with her daughter she is concerned, as she should be.  The thing is, Ellie's doctors don't tell us, "She's going to be fine".  On the contrary they tell us, "If you ever think anything is wrong you need to call immediately".  So how can she be so sure that Ellie's going to be fine?  It also feels like it invalidates the constant concerns that Charles and I do have for Ellie's health.

Instead she could say:

"She is such a miracle!"  

"You must still be so concerned about her."  The last thing I want is anyone's pity but I do think it shows how much you care if you are willing to put yourself in my shoes for a minute and realize that having a child with a serious illness is not easy.

3.  "What's wrong with her?"  In general this question doesn't bother me because I know what the person really means and I know that just asking shows that the person cares.  What I do have a problem with is when this question is asked where Ellie can hear it.  Because while I understand what you are asking me, she doesn't need to hear that someone thinks something is wrong with her.

You might think it's children who ask this question but that hasn't been my experience at all.  I've been asked the question in these exact words 3 times and all have come from adults.  I think children ask better questions in this instance.  Children ask, "Why does she wear a helmet?"  "What's that on her stomach?" (asking about her G button), and "Is that a leg brace?"  A lot of little girls start out with, "I love her helmet!  Why does she wear it?"  Children get it right.  Simple and to the point without the negative implications.

4.  Please don't compare Ellie to your typically developed child.  When people compare Ellie to their child, it is always done in an attempt to encourage me but it in fact does the opposite.  The times this has happened, it has been people comparing Ellie to their child that is younger than she is.  "It's okay, Carson doesn't talk much yet either.  I really don't think she is much behind where he's at."  When this happens, I can't help but in my mind compare Ellie to their child for the rest of the time we are together and every comparison hurts.  Carson runs, Carson jumps, Carson climbs, Carson calls for his "Mama", Carson asks for "wawa" (water), Carson can make animal sounds, Carson can answer "yes" and "no" questions...... You get the idea. 

This doesn't mean that I don't want to hear about your child.  Because I do.  I want to hear about all the amazing things that they can do because I can relate to the feelings of pride as your child meets milestones, grows, and learns new things.  As long as we aren't comparing our kids, I can be happy for your child's accomplishments just as I am happy for my own children.

5.  "I can't even tell anything is wrong with her."  I never really know how to respond to this statement.  Should I point out for you all the ways she is different from other children her age?  Usually I just kind of agree and move on because I'm sure the person is just trying to be encouraging even if their statement minimizes everything Ellie has been through and continues to go through.  And just like the problem I have with the world "normal", this too indicates that the person thinks something is wrong with my perfect little girl.

It's much nicer to hear:

"She sure is a determined little girl."

"I know you must be very proud of her."

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I want you to talk to me about Ellie, whether you know the right things to say or not.  When I have Ellie with me and we meet someone new, I actually feel more awkward about the situation if that person doesn't ask me about Ellie than if they do.  I don't know if they just think they aren't supposed to ask or if they actually don't want to hear about her.  And since I find it awkward, I will oftentimes go ahead and tell the person all about Ellie, whether they wanted to hear about her or not.

I'm still learning the right and wrong things to say myself.  Recently Payton saw a man in a wheelchair and she blurted out, "Maybe he had a stroke!"  Being the mother of a child who has had strokes did NOT prepare me to be able to respond to Payton's comment.  I didn't know what to say!  He acted like he didn't hear her and so I acted the same way.  I hope people will forgive me for saying the wrong thing or not saying anything at all when I just don't know what to say.

I think the best advice is to always speak from your heart and then the person listening will know your intentions even if your words don't come out right.  The intentions behind the words are far more important than the exact words you use.  So to my friend who asked me to write this blog, thank you for caring enough about my feelings to ask me to write about this topic.  You are careful with your words and on top of that, I know your heart and I know that you only mean good in the things that you say.  I think most people mean good whether they use the right words or not.

How Ellie is doing these days

As I posted the other day, it has now been over a year since Ellie's first stroke and brain surgery.  Then it was exactly 2 months later that she suffered her really bad stroke on the other side of her brain.  The second stroke (and several smaller strokes to follow) is what has left her mentally and physically disabled.  Yes, it's finally registering for me that she is disabled in many ways.  As we get closer to it being a year after her major stroke, I am starting to accept that strokes cause permanent brain damage.  I think I was in denial of that for quite awhile.  I kept thinking she would just bounce back from it like she did her first (much smaller) stroke.  And one day she may regain all the abilities that she lost but that doesn't mean the damage isn't still there.  Things have always been a struggle for Ellie and I know that isn't going to change.  What comes easy for many children isn't going to come easy for her.

But Ellie is a determined little thing and I know she has it in her to keep overcoming all that is stacked against her.  I see 1 year old babies doing things that she can't do and sometimes I feel a wave of sadness but then I remind myself that they haven't overcome multiple strokes.  

As Payton said recently, "Everyone is different.  Some people have black hair and some people have blonde hair.  Some people have curly hair and some people have straight hair.  Some people have Moyamoya and some people don't."  

We aren't waiting and hoping that Ellie "gets back to normal" because to us Ellie is an normal as anyone else.  In fact, we are so used to Ellie the way that she is that we sometimes are surprised when we see typically developed kids doing things.  For instance, sometimes when I see Skyler use both hands to grab something my initial reaction is, "Woah, how did she do that?!" before I remember that most babies do use both hands.  Or when a little 2 year old at church, who was sitting in an adult sized chair, started leaning to reach play dough and I ran to be by her side because I thought she was certainly about to fall out of her chair and hit her head.  And when I go to pick up Skyler, I am always careful not to put pressure on her feeding tube (that she doesn't have!)  To say we are praying Ellie "gets back to normal" would imply that we think she is currently something other than normal and that just isn't the case at all.  Ellie is perfect just the way she is.   

Working hard in therapy

But, of course, we want to provide Ellie with the opportunities to accomplish all that she can and so she continues to receive 6 therapy sessions a week at our house through a pediatric home health company.  And so that's been the story of our lives with Ellie in 2015 so far.  

In speech therapy Ellie is making improvements in the number of sounds and ASL (American Sign Language) signs that she knows.  We are extremely blessed to have a wonderful speech therapist.  Ellie remains nonverbal and communicates mostly through screams, grunts, and pointing.  But she does have a few sounds and several ASL (American Sign Language) signs that she uses now with meaning.  Her outward communication is equivalent to that of a typically developed 9-12 month old.  

Her understanding of things is higher at about 12-18 months.  She can't identify a single color or shape even though I work with her on those things regularly.  She is starting to be able to point to a few body parts when I ask her such as, "Where are my eyes?" but won't point them out on herself.  She is also starting to point out a few common animals and objects when I ask her to find them in picture books.  She can follow directions that are very familiar to her but is unable to follow unfamiliar directions.

Playing hard in therapy

Ellie still has no use of her arm or hand.  I hear all the time, "Wow, she looks like she's moving her arm a lot more!" and I wonder what people are talking about.  Yes she bring it up as balance and can manage to move it out of her way but she's been doing those things since at least January.  There is hope that one day we will be able to get her to use it as an assist.  An example of this would be that she could use it to do things that require 2 hands such as picking up a large ball even if she does so with her hand fisted.  But for now, if she can't do something with one hand, she won't do it at all.

I think Ellie's walking is about the same as it was in April.  She walks with a limp and sometimes her toe drags and she falls forward.  Lately she's been having some trouble with falling right onto her G Button which causes her pain and bleeding.  She is getting better about going up stairs with assistance but still can't climb or jump.  

But dance, yes she can dance and she loves it!  I remember a moment when Ellie was very sick in the hospital.  She was undergoing a sedated MRI and I was sitting in the waiting room in tears.  I was attempting to distract myself with my phone, just trying to keep from melting down in the hospital waiting room when a friend wrote, "Get an image of how you want to see Ellie after this is all over and keep reminding yourself of what you want. Perhaps a really happy fun recent moment. Hold that in your mind and keep telling God that this is what you want. When you find yourself consumed with scary thoughts go back to that happy smiling active image. I'll do the same."  I responded with, "I want to see her home, dancing to Party Rockers in the living room with her sister and a big smile on her face."  That's what I wanted more than anything in that moment but Ellie was in such bad shape that I questioned whether I would ever again get to be home with my baby, watching her dance.  So now we dance every night and it's a daily reminder of how much I have to be thankful for and how far Ellie has come. 

This has been a long summer already.  Summer used to be my favorite season--- swimming, soaking in the sun, enjoying time outdoors, the long days.....  But these things aren't possible with Ellie. We live 2 blocks from the beach that Ellie can't play on and water she can't swim in because her g button can't be exposed to sand or water that isn't chlorinated. She also can't be out in the heat.  Heat causes your blood vessels to constrict and since her issues are with limited blood flow to her brain, heat could actually lead to her having another stroke.  Heat can also dehydrate a person which would also affect her blood flow but thankfully if we realize that she is at risk of dehydration we can give her extra fluid in her feeding tube to prevent it. We are outdoorsy type people so being stuck inside for weeks on end hasn't been easy.  Needless to say we are ready for fall and some cooler temperatures!  

When you are stuck indoors all summer you have to make your own fun!

Ellie will have a surgical procedure called a cerebral angiogram on Tuesday to help determine if her brain surgeries were successful in creating a new vascular system in her brain.  This is a minor surgical procedure and she should be able to go home later that day but there are risks to this procedure such as it causing a stroke, excessive bleeding, and problems related to going under general anesthesia so we certainly wouldn't mind some prayers!  Ellie has only had one other angiogram performed and it was done after her first stroke and used to confirm the diagnosis of moyamoya disease. 

Her recovery from that angiogram was one of the scariest moments of my life.  She woke up from the procedure without issue and was resting in the recovery room with Charles and I also in the room discussing the results with her neurosurgeon.  When suddenly her mouth opened really wide, she got a distressed look on her face, and she didn't take a breath.  I started yelling, "She's not okay!  She's not okay!"  Then her alarms started going off as her oxygen levels dropped.  The nurse ran in and started giving her rescue breaths.  Thankfully after just a few rescue breaths she resumed breathing on her own.   But she proceeded to do this several more times.  To this day we still don't know the cause of these episodes but we are looking forward to having this angiogram behind us.

Thank you all for continuing to follow our journey.  I will update everyone on Ellie's angiogram on Tuesday.

Hard to believe she is 5 months already!

Age:  5 months
Weight:  15 lbs (70%)

Height: 24.75" (57%)
Clothing size: 3-6 months but they are getting too small
Diaper size: 2

Hair Color:  Dark brown

Eye Color: Hazel-ish/ Brown-ish

Favorite songs:  "The Itsy Bitsy Spider" and "The Wheels on the Bus"

New things:

 *  We've been giving her Prevacid and she is nursing without issue and seems less hoarse.  Hopefully that means it is working.

*  Skyler laughs often when I talk to her.  Especially when I ask her, "Why are you so cute?!"  and when I talk to her about bears.  You know, offering advice about how if you ever see a bear you should run really fast because bears bite.  Everyone has these kind of conversations with their 5 month old, right? 
*  Prefers to nap in her car seat even when we are at home
*  Starting to like toys and to chew on things
*  Likes her pacifier