Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Saturday, August 30, 2014

Hospital Update #2

Meagan's MRI went well yesterday.  She handled the sedation well and while she took a little longer than usual to wake up, she did wake up fine.  The first thing she said when she woke up is "Go to bed!!"  She has started to say this referring to her hospital bed.  She knows when she is in her hospital bed, she is basically resting.  She knows when she leaves her bed, it's for some sort of test.  Smart kid.

When we got back to our room last night following the MRI, there was a technical problem in the room, so we were informed we had to move next door.  Meagan was an absolute mess.  By. the time we had walked up she was in complete meltdown mode.  As we moved rooms she became inconsolable.  The bad day she had, the MRI, the sedation and just feeling "blah" all culminated in an epic meltdown.  We were very lucky to have a tech and Nurse who know Meagan really well so once the new room got settled, they advised everyone else to just exit and let Meagan be with me alone to calm down.  (Love nurses like that!) Even doing that it took me a good 20-30 minutes to calm her down.  She was flailing, arching her back, and almost throwing herself off the bed.  After a big bear hug by mommy to keep her safe, and lots and lots of talking and trying to redirect, she did start to calm and soon she was snuggling in my arms.

The first floor nurses are so amazing with Meagan.  Many of them know her well, but even the new trainees seem to be following in the pattern of being good with her.  They even took Olaf's blood pressure (zero!) and temperature (freezing!) to help Meagan be more calm when getting her vitals done.

We decided to go ahead and try another feed at a slow rate to get her some food and see if she could handle it overnight.  The first part of the night was a bit crazy.  She was calmer as far as screaming, etc... but she was extremely restless.  She seemed like she just couldn't get comfortable.  She held her eyes a lot, not crying, but just wincing and squeezing her forehead like she had a headache.  Luckily later on, daddy stopped by which always helps.  Meagan is SUCH a daddy's girl.  Even if she's feeling badly, when daddy comes in, she lights up and just wants to snuggle him.  He stayed and snuggled for a few hours.  It was helpful to have him here to give her some love and also sit with her while I went out front to meet my mom and the girls.  They had driven down to bring me some fresh clothes and so I could have a quick visit with the older girls.  I'm so thankful my mom rearranged things at work to drive down from DC a few days ago so we didn't have to rely (and pay for) babysitters.  It helps to keep things so much calmer at home.  My mommy heart strings were tugged at, though,  last night for sure when I saw the older girls.  I reached in the car to give each one a hug and when I got to Reilly, she just buried her hands in her face and cried.  I reached in and grabbed her and just put my arms around her and told her I loved her and missed her.  Being the oldest is hard sometimes (I know, I'm an oldest child too) because so much is expected from you.  As the oldest typically you are "wiser beyond your years" in many ways... but in those tough instances when you are supposed to be that way, you just want to be little and have hugs and kisses and support from mom.  I knew Reilly was feeling this yesterday.  I comforted her, but then she was such a big girl and said she knows I needed support, not another "baby" as we already had Meagan to be concerned about.  She's a little toughie.  So much to balance and process for a 9 year old - but I am so so proud of her.  I told her she can have hugs whenever she needs to and to be strong and help Nanny (my mom) with the other girls and all the special things I normally do at home.  She dried her eyes and was ok when they left.

Brian left as it got later in the night so he could get home to be with the older girls and help.  Meagan continued to be restless through much of the night, tossing and turning, and finally around 1am she did fall asleep.  I was glad because as selfish as I think it sounds, I was exhausted too! We both snuggled and slept until about 4am.  Meagan woke up and was upset and restless again, and then again, she fell back asleep until about 7am.  At that time, the resident NSG came in and talked things over with me and said Dr. R would be by shortly.   When Dr. R came by, we talked about Meagan's MRI.  For the most part, her MRI was stable.  There are a few changes here and there, but nothing he wants to rush in to surgery for considering everything she just went through in June.  Moreso, the surgery most likely needed (Chiari again) is quite dangerous at her size and we want to buy as much time as possible before that becomes necessary.  Of course we don't want her hurting, but, to be honest, if we have to deal with a bit of fussiness and some bumps in the road, and  if we can help manage that with her new shunt system to at least provide temporary relief, I'm all for that to help her get even bigger and stronger before a surgery like that happens. Of course we don't want her feeling badly but if we can improve it through managing her pressures, I'm on board with that.  If over time she becomes so bad she is miserable daily, or we see a big dip in major skills or basic functions, or an increase in seizures, of course we will revisit that conversation.  Dr. R then turned Meagan's programmable valve up pretty high and said the plan for today is to wait and watch.  If she can handle her feeds and her mood improves, he is willing to possibly let her go home tonight.  He said she has to have improved behavior though and be able to sit up for a prolonged time and be happy/play like her usual self.

Meanwhile, we saw GI - they concluded that Meagan definitely does not have any GI issue as a "primary problem".. .in other words, no "thing" we are missing that needs to be diagnosed or treated.  GI's conclusion is that all her GI issues are always a symptom of neuro problems or her issues with pressure changes.  They did decide to keep her on the Nexium (she has been getting it through IV here) at home just to protect her esophagus if she gets sick when she has pressure issues again, but that's the only change they are making.  As of now she is on slow feeds - only about 50-60 an hour to help her absorb more nutrition. (Originally she was on bottles, boluses, and the occasional pump feed at home).  GI recommended continuing this until she is really settled in to the new pressure setting Dr. R set so her neuro issues can really settle out and then if she's doing better over the next few weeks, gradually increase her feed rate as we feel necessary.  He said it may be that she will always struggle with GI complications when having brain pressure issues just since she is so extremely sensitive, but that they will work together with us and NSG to make sure she is handled the best way possible for her GI health.  I was very happy with the conversation and am thankful she has such good GI doctors who really vet the situation before slapping on new diagnoses or medications unnecessarily.

So today we will see how she does at this new setting and hope for improvement as the day goes on.  I'm hopeful as she seemed to tolerate her slow feed overnight and we have seen no more seizures since Wednesday. She still won't take her bottles which is odd because it's really been her main comfort for almost three years, so I'm hoping as we get more settled we will see her want the bottle again.  Fingers crossed! Again thanks for all the thoughts and prayers.  Meagan is very lucky to have such special family and friends.  We will keep you posted if she can head home later tonight!

Meagan had a very special visitor yesterday...Olaf!
 The perfect gift from Ms. Lori, who has been by Meagan's side since birth... 
Olaf  even took a second to grab a selfie with Megs :)

Friday, August 29, 2014

Hospital Update

As I mentioned before, Meagan was recently hospitalized.  Starting this last weekend she wasn't holding her feeds down very well.  Along with that we saw increased irritability, and her grabbing her head a lot as if in pain.  We also noticed she was a bit off balance.  We waited a few days before going to the doctor on the chance it was just an off day or a viral bug, but she continued to get worse.  By Tuesday she didn't want to do anything except lay down on our carpet.  She asked for her bottles but wouldn't drink them and she wasn't handling the tube feeds well still.  I had emailed Dr. R the previous night explaining what we were seeing and they said if not better by Tuesday to go to the ER... so off we went.

Meagan was dehydrated and still not holding feeds and in obvious discomfort when we got to the ER.  It was clear after we saw the ER doctor and the Neurosurgeon on call that she was being admitted.  If for anything, to observe, but considering she just had her new shunt system put in a few months ago, her behavior warranted them keeping her to check things out.

Meagan was fairly miserable and started having issues breathing efficiently at night.  She was getting oxygen ok, but her actual respiratory rate would fall to exttremely low numbers, prompting me to jostle her a little in bed, after which she would take a bigger breath and then stabilize her rate.  We also still had her holding her head in pain and she still wasn't tolerating feeds.  Wednesday morning, Meagan slept.  She slept and slept and would barely wake up.  Dr. R didn't like it so he came down and adjusted her shunt.  He then continued to pump it vigorously by hand, after which Meagan seemed to come around a bit more.  We decided to try continuous feeds on the feeding pump to see if that helped with the vomiting. The GI doctor also ordered her some Nexium to protect her throat from scarring when throwing up, and Dr. R wanted to watch her at the new setting to see if we saw any improvement. He gave her a big hug and kiss before he left for the day and told her to behave.

 As the day went on, Meagan continued to have the same behaviors.  She even ended up throwing up her continuous feed, so at that point GI talked about putting in a Jtube to bypass her stomach and put her food directly into her intestines.  I was not opposed to that if that's what it took to get her nutrition, but, I was not ok with doing that without vetting every possible Neuro cause of what is going on since that has been her pattern in the past. Meagan also had a few seizure clusters - but a new type.  She had three clusters of what are called drop (or atonic) seizures.  You can read more about them here, but basically it is when there is a sudden loss of muscle tone, most often noticed in the head as it will suddenly drop like dead weight forward, and then recover, and then repeat.  Meagan did this about 5-8 times in an obvious pattern in each of her clusters. Each cluster was about 30 seconds long and the nurses thought with the repeated clusters it was time to let Dr. R know.   Dr. R went ahead and called Dr. F (Meagan's Neurologist).  Rather than go through more doctor visits, and considering she already has the epileptic history, he decided to just push up her Trileptal dosage to hopefully curb the new breakthrough seizures.

This morning I talked to GI and Dr. R and Blair about my thoughts and they all agreed that we should try a few more things neurologically first before changing Meagan's GI habits.  The GI doctor said she felt the GI symptoms were basically just that - a symptom of something else going on.  Today Meagan still is holding her head and eyes as if in pain, and she also refuses to sit up, or if she does for a second, she flops over or arches really far back.  Dr. R said that based on that information alone, he may need to mess with her new valve some more to find a good spot for Megs that is at an even higher setting.

In a little bit we are off to MRI just to double check her other brain issues and Chiari..etc... to make sure all that anatomy is stable and that we aren't missing something.  If all that is stable then Dr. R will come and dial up Meagan's shunt even more and then we will wait and see if symptoms subside and feeds get back on track.  That's where we stand at this point.  We are so lucky to have such a great group of specialists looking out for Megs.  They truly care about her well being, and are such good listeners whether it be listening to the parents or the nurses...which is such a critical piece in getting Megs the best care possible.

We will update more tomorrow once we know the MRI results and what the plan is!

Meagan relaxing with pain meds and fluids....as you can see she is not a fan of the gown. Oh well - whatever works!  The child life person on the Neuro floor remembered Meagan absolutely LOVES Frozen, so she found a copy and has let her watch it over and over in her room.  It keeps her very content while we wait for tests and results! 

Thursday, August 28, 2014

We Will Be Right Here

***Disclaimer: I started to write this post before Meagan was hospitalized.  We aren't really sure what is going on yet but as soon as we have anything definitive I will post an update.  For now, I wanted to complete this post about her school evaluation and plans for the year.***

Meagan had her hearing test and county school evaluations this week. She did fine at her hearing test - she was a little nervous to go in to the booth without me, but once I took her in there and got her settled with the audiologist and some toys, I was able to sneak out and Megs did just fine on her own.  She responded to everything she was asked to do and the audiologist said she passed well enough to have no restrictions at school.  The audiologist said they would retest Meagan's right ear before Kindergarten because it was getting more negative feedback than normal and they want to make sure that doesn't get worse.

Meagan hamming it up at her hearing test...

The next day Meagan had her school evaluation. We arrived at the testing school and met the team.  The PT, OT, SLP, Feeding Therapist and Nurse were all very nice and were immediately met with a big "hi!!" from Meagan. As soon as I put her on the ground she scooted right over and started playing.  The different therapists started their evaluations while the Nurse and I went to another room to go over Meagan's whole case from birth until now.  Once we were finished going through her complex history, we walked back to the testing room.  Before we even got there, I could hear several doors down the hallway absolute belly laughter coming from the room.... from the therapists! When we walked in, one of them turned to me and said "Oh my...she is hilarious!"  I just smiled and said "Oh, I know!"  Once the eval was finished, we got all the paperwork necessary to move forward and schedule her IEP meeting in early September.  Once we got home, I called the Special Needs Preschool teacher to leave a message with my information and to hopefully set up a class observation time.

A few mornings later, I had sent the older 3 girls off to school and it was just Maura, Meagan and me at home getting things done and making sure Maura was ready for school too.  I sat Meagan on my bed while I folded some nearby laundry and Maura hopped right up with her.  As you know, Meagan has a lot of sensory issues - a big one being her head.  She hates hats, headbands, and even her hair being brushed.  She absolutely screams if I ever have to put it in a ponytail or even try to put a sun hat on her.  So it amazed me when I saw Meagan allow Maura to mess with her head a little bit.  What was even more amazing, was when Meagan started to become irritated with it, Maura just adapted.  In the video you can hear her saying, "Meagan, I'm not brushing your hair! I'm just rubbing your head!"  It thought it was the most clever thing.  There she was, a 4 year old, trying to word something differently so Meagan would let her keep doing something that she really has a hard time tolerating.  I watched for a bit and then started to record it.  I just love the care that Maura has for her baby sister.

As the week went on, we were discussing Meagan's school options.  We got a call saying that actually they were going to change her from her home school to a different school - I'm sure the SN program there is great as well, but, it's in the wrong direction for me to drive and handle the older girls' schedule, and it's not our neighborhood school where I know a lot of families.  There was a lot of internal struggle as I went over the back and forth of if Meagan should even go to school this year, or if we should wait.  She's my "baby" and also thrives so much from being home with me and working with me.  She also has no lack of social interaction as her sisters are constant "mini therapists" for her every day, just as I had witnessed with Maura that week.  Yet, I could still see some of the benefits of her attending the SN preschool to get some of her services like OT or feeding therapies.  Many pros and cons went back and forth in my head until one night later in the week.  

That particular night, we were hanging out in the kitchen. We had the Frozen soundtrack on and were listening to Meagan's favorite songs over and over again while we made dinner, did work, etc... Each of the girls took turns singing with Meagan, helping her "dance," and sitting with her. I was watching the girls and enjoying them playing together really letting the music just pass me by.  I mean, how many times have I heard the Frozen soundtrack....? Probably one too many times.  However, I started to listen at one point and the lyrics caught my attention. It went:

"......'cuz for the first time in forever, I finally understand.  For the first time in forever, we can fix this hand in hand.  We can head down this mountain together. You don't have to live in fear. 'Cuz for the first time in forever, I will be right here........"

I realized at that moment if we decided to keep Meagan home this year, she would be ok. School will be so wonderful for her, and we are very excited about it,  but there is no rush if we aren't ready as a family, especially when the program we were hoping for didn't have a slot for her.  We weren't impressed with her secondary placement - so there's no need to jump in where I know I won't be comfortable.  If something changes in the future, and our local school has an opening,  then we can re-evaluate.  She has everything she needs where she is - her in home therapists (who are staying with her even after her third birthday - yay!), her parents, her pets, and best of all, her sisters.  Right now, she absolutely thrives on close relationships, and she already has that built in with her home team, family and therapists alike.  When she does go, the one thing that will never change would be her sisters' love for her. Their understanding of Meagan and who she is has grown exponentially this year, and it is truly inspiring to watch them invent their own ways of working with her or helping to understand things she is afraid of. Their special way of teaching her and caring for her that no school could ever offer her, and if we can give her that for another year, we will.  It amazes me the way the older girls can bring things out of her that no one else can.  Most importantly, the gift they give Meagan daily of never feeling alone is invaluable.  Meagan's favorite song is right - hand in hand, they are going to do this together.  We will be right here.

Friday, August 15, 2014

Time and a Place

I was debating whether to write about this but after thinking about it, I feel it's important.  It's not a complaint, so to preface, don't read it that way.  It's more of an observation and as a mom, I want to teach my children about their presence when out in public, and about respect.....so here it goes.

First, what happened:
I was having lunch with a fellow special needs mom.  I had all 5 kids with me, and she had her child with her who also has Hydro.  We were enjoying a nice time catching up and bouncing things off of one another having to do with our SN children.  My older four kids were sitting there talking and eating nicely.  They were being quiet and respectful and having a great time.  We happened to be sitting next to the front tables so Meagan's wheelchair could fit and still leave plenty of room for the servers. People walked in and out, as in any restaurant, and the lunch continued smoothly.  At one point, two young women came in.  The server greeted them and nicely led them to a table near us to seat them.  Before even going near the table, one of the young ladies turned her body away from the server, faced my friend and me, looked us directly in the eyes, and said in a loud and purposeful tone full of attitude, "Ugh, I don't sit near children (think of the most snotty disdainful tone you have ever heard)..... We need another table!!!!" With that she glared at us with an unfriendly stare, flipped her hair back towards the server and stormed behind the server to a different table across the room.  Both my friend and I were taken aback by this young woman's brash nature, and even the waitstaff around her was suddenly fidgety and extremely uncomfortable.  One of the waitresses even came by our table and said "don't worry about it" while another staff member apologized for the young woman's behavior.

Second, the response:
My friend and I were utterly speechless.  For those who know me, I'm rarely speechless. :) And that is usually a good thing.  I'm a strong independent woman and mother, and this has helped me through numerous uncomfortable, or inappropriate situations.  But I was speechless.  As everyone knows, having the 5 children including Meagan we have had our share of "comments"...but even those I can dismiss as "ignorant" or just a lack of exposure to larger families, and if persistent, I have responses at the ready.  This young woman, however, was just trying to be mean.... and the effort put forth was shocking to us.

Third, the plan of action:
I have heard people mention numerous times that I am a "mama bear."  I take this as a compliment, because, frankly, I think any mother is absolutely a mama bear to some extent.  It is just instinct.. We are here ultimately to protect our children, so it is a natural occurrence that comes to the forefront when needed.  As we finished our lunch yesterday, we contemplated how we could have reacted to that young woman.  Perhaps a comment we should have thought of faster. Or maybe approaching their table and saying something. I even jokingly contemplated parking my children outside at the window where her new table sat, but we of course realized as funny as these ideas were, none would be productive or effective.
 We were still in shock at how rude the girl was and at a loss as to why she would go through such a public effort.  As my friend and I left the restaurant, we said our goodbyes and went to our respective cars. Just when I had closed my door to start the car, I happened to turn and look at the car next to me.  There were the two young women.  As soon as they saw me, they pulled down their sunglasses and gave me a purposeful 5 second disgusted look, and then proceeded to back out of the parking space at lightning speed (to make a point I suppose - glad all my kids were safely in the car!)

Of course inside I was quite angry about the whole thing from the restaurant comment to their continued attitude upon noticing me in the car.  And then Reilly asked me "Mom, why was that woman so mean? It made me sad."  That's when I took a step back and realized that she was right.  As shocking and rude as the young woman had been, and as much as it had insulted my friend and me, and our children, it was worse than all of that.  It was sad!

Fourth: Thoughts
I have no clue if we will ever cross paths with that young woman again, but, I'm sure I will never forget her.  If my 9 year old can pick up on the sadness, then the young woman must know it as well, even if not continuously.  And that's not a way to live.  As Mother Teresa said, "Let no one ever come to you without leaving better and happier.  Be the living expression of God's kindness: kindness in your face, kindness in your eyes, kindness in your smile."  As much as I really wanted to give that woman a piece of my mind, I realize now why God may have helped restrain that urge. That woman's sad view of children and of the world would not have been helped by anything I had to say - someone that blatant and that resistant to joy would not be moved by much.  It would have to be an internal transformation, and that is something I cannot influence verbally.  But by our actions, by the children behaving and smiling and having a great time, by my friend and I keeping silent in the end and just continuing our lunch, and by our prayers for the young woman maybe, just maybe, she will have a change of heart.

I do not know her, or what she may have experienced.  Perhaps there is a valid reason for her disdain towards children and her need to outwardly express that.  I just hope that I raise my girls better than that.  People are entitled to their opinions, and yes, I even mean opinions to not wish to sit around children or perhaps opinions that somehow kids are noisy and annoying.  That's ok.  Not everyone is a "kid person" and it's just part of humanity that we all have our limitations.  However, I do hope that in the future, the young woman is at least changed enough to know her presence and simply have respect for her other human beings in public places.  My parents always said "there's a time and a place"...and this was a prime example.  I really don't mind what the reason is she didn't want to sit near us - but there was no respectable reason to tell us that, and make such an effort to turn to us and proudly announce her dislike of children.  She could have easily asked for a table across the room, without proclaiming her reason why, and then proceeded to talk with her friend at their new table about how she doesn't like to be around kids.  Obviously there is something there that bothers her so much, she felt the need to publicly make it known and act disrespectful above all.

Fast forward to last night. The girls and I were sitting and cleaning up from some groceries.  There were some brown paper bags that we were collecting from our grocery boxes to put into the trash.  Reilly started to rip up the bags to make them easier to fit into the trash can.  As soon as she did this, Meagan just absolutely lost it and started laughing.  We thought it was hilarious, so I grabbed my camera and Reilly did it again - and Meagan laughed hysterically! Over and over.  It was so silly, but it brought so much joy seeing her laugh and laugh and laugh, we started to giggle as well.  I couldn't help but think of the young woman we had encountered that day and Reilly's comments to me.  She was right.  It was sad.

 As I listened to Meagan's infectious laugh I couldn't help but think all Meagan has been through.  And here she was, laughing hysterically....at ripping paper.  I realized she had something that woman didn't - pure joy.  There's a time and a place for us to vent, profess our dislikes or annoyances to our friends, of course.  But there is always a time and a place for joy and respect - and at the end of the day, I'm at least glad my girls realize that.  I hope, somehow, that young woman finds it too.

Monday, August 11, 2014

The Love of Dance

So Meagan being the youngest means she gets to go everywhere her big sisters go.  Often times, this means she is tagging along to something having to do with Irish Dance.  Being that Irish Dance is the girls' main activity and sport, there isn't a month that goes by where they don't have some sort of show, competition, or classes.  There are a lot of benefits to Meagan being in this environment. Most important are the relationships she has formed with several of the dancers and their parents.  In essence, during class times (which are several times a week), Meagan becomes sort of "part of the dance family" and bounces from parent to parent snuggling, exploring and playing.  The parents don't mind at all and jump right in loving on Meagan and often times being surrogate therapists helping encourage her to crawl around or holding her up to stand or "walk" around the studio waiting room with them. Even the teachers jump in taking time to give Megs a high five, a fist bump, or talk to her about her feet and encourage her to "dance" in her own way. We are very lucky that there are such good families at the dance school - it truly is like a second family.

Meagan's vocabulary has grown from being around the dancing.  She learns lots of rhythm words, and lots of descriptive words when the girls talk about kicking higher, or going faster.  She has even learned new words like "pretty" or "sparkle" and lots of her colors from all the gorgeous costumes and hair pieces the girls wear to compete.  It is so sweet to watch her with the dancers being so gentle and examining every part of the dress taking in all the beautiful colors and textures of each costume.

Feeling the different textures of Kaitlin's costume

A more "practical" skill we have noticed lately has suddenly taken off and in large part, I am realizing it has to do with the dance classes.  In most classes, the girls are counted off by saying "1, 2, 3, 4, 5, 6, 7, off you go!"  Meagan started trying to repeat this a few months ago by saying in her own way "fiiiii (5), siiiiii (6), sevnnnn (7), off you go!"  It was the first time we have really heard her start to "count" or even say numbers or repeat them in order.  As the months have gone by and Meagan has sat through countless classes, competitions and shows, Meagan picked up more and more numbers and would say them more clearly each time.

One day while driving in the car, we hear from the back seat "Daddy, count!"  Meagan then proceeded to start at 1 and would say every other number with Brian filling in the gaps.  She almost made it to 16 before pausing and going back to 1.  We were astounded.  We didn't know that she had soaked this up so I asked her to do it again.  And she did! Below is the video from that day:

Ok then... I guess we love to count!

As of late, with the gait trainer being a 'no go' dancing has actually become a motivation for Meagan.  If you ask her if she wants to get up, she usually says no.  If you ask her if she wants to work on walking she often says "no! no walk!"  But lately, if you ask her if she wants to dance, she will say her usual "5, 6, 7, off you go!" and then scoot forward so I can pick her up and help her stand up to "dance."  This is how we are now getting her to weight bear a little on her feet and encourage her to stand....by asking her to dance.  It's quite hilarious.. and quite the work out! 

Irish dancing with Pop Pop

I remember as we started to realize Meagan's physical limitations and struggles... and at the same time watching the older girls take off in Irish dance... and I often wondered to myself "would Meagan ever be able to do that?"  I often wondered how we would incorporate Meagan in her sisters' activities when she did things in such different ways... how would we help Meagan find things that she loved too?  Seeing Meagan now, and the motivation she has drawn from Irish dance, have answered those questions.  She may not dance exactly like her sisters, but when at shows or competitions, seeing her clapping to the rhythm, or smiling at the music and costumes, or seeing the absolute joy pouring out of her facial expressions as her sisters practice show me that she, too, loves dance.  Practically, exposure to dance has allowed her to progress in skills like counting and colors due to being around the Irish dance environment and the wonderful school families and teachers who have taken Meagan right under their wing without batting an eyelash.  And most importantly, Meagan has found new motivation to do the things that are hard...like working on standing or walking... the things she really doesn't want to do but has to do.  Resistance has turned in to willingness.... if we frame it as if we are asking her to dance.

 It warms my heart to see Meagan love something her sisters also love doing.  The girls' love of Irish dance has not grown to be a barrier as I feared, or leave Meagan as a bystander, but has rather been a mechanism to allow bonding between sisters, education and acceptance among the dance family, and unintentionally has become an art Meagan loves enough to lead her to a progression of skills that would have otherwise not existed. Famed American dancer choreographer Martha Graham said, "Dance is the song of the body. Either of joy or pain. It is the hidden language of the soul." Meagan may mostly dance in her heart, but the skills and motivation she is gaining from it in her own way are astounding. The inclusion she feels is uplifting. And the joy it brings to her soul...... well, that is priceless.  

Completely wiped after a few hours of watching and clapping at a competition

Wednesday, August 6, 2014

Knee Pads

Meagan's gait trainer was returned last week. Between Mrs. M, Brian, and myself, we decided it was best as we were seeing no improvement and continued misery, which in the big picture, was not ok with any of us.  When Meagan's PT then told us she had another child who could use the trainer and had tested well on one already with no fighting, we decided with all the factors we had already been contemplating, it was best to return it to the PT and let the child who would actually benefit from it have a shot.

As people found this out, we got a lot of "oh no!" or "aw, that's too bad"..etc especially following our last post of hopefulness that the gait trainer would work out.  None of the comments were malicious in any way...they were all very well meaning.  But they were definitely comments of projected disappointment.  I think when things like this happen, sometimes people not in our shoes don't understand that a setback can really occur at any time, and be permanent, or be temporary.  Sure... we were hoping that Meagan could get over being strapped in the trainer and realize she could finally move with her feet..independently! But it was just not meant to be at this time.  We are still working with Meagan on weight bearing by holding her and letting her stand by the couch, or tap her feet on the floor.  While she doesn't get as much of a "workout" this way as she would being fully on her own weight in the trainer, it is at least getting her upright time to time and she is at least having fun with it.

This occurrence, plus some conversations with fellow special needs moms this last week about some setbacks they have also been having with their children really brought to light how much of a rocky journey this road really is.  Speaking personally about brain issues, it's all part of it.  The brain is an amazing thing, but also an unpredictable thing.  So sometimes it works wonders of progression, and sometimes we have a bump in the road that was either not foreseen, or that comes out of nowhere. Sometimes, it seems there a lack of awareness of the actual process by which brain kids accomplish new things.  And that's understandable.. I know before Meagan, I was not as aware as I am now (although I was admittedly more aware than most typical parents, as I had been around my mom's school students long enough to realize some parts of the special needs journey).
Having 4 older 'typical' children, I can completely understand this mindset.  Thinking back to my other daughters' development, although they each developed at their own pace and quite differently, there was at least a general theme that held true.  Once they started to accomplish something, that was it - accomplishments kept coming. Better, faster, and on to new things.  As soon as my oldest mastered supported sitting, she was sitting on her own within days.  As soon as my second born could pull up on the couch, walking was not too far behind.  As soon as ...... and you get the trend.  This is common for most parents.  The child will hint at a milestone, dabble in it, accomplish it, and then master it.  I think this is why it's hard to grasp how a special needs child just simply doesn't move forward on to the next logical step.. or even harder to grasp is when a child is on the path to accomplishment but simply just stops doing what they already knew how for no apparent reason.

Having a special needs child is certainly a long road. Heck, being a parent at all is tough! I knew this when I "signed up" for this journey and would often visualize a never ending road as a way to prepare myself. I would think of it when we would drive across flatter lands like Texas or Central Ohio and I would look down the high way....how it almost seemed to touch the sky and the end of the road was not visible to the eye at all.  While this image has held true to a point, I realize now after many experiences of the unexpected setbacks it has been a false picture.  Instead, now I think of it as the hiking path on the mountain near our home.  A lot of climbing. No end in sight. And a lot of rocks and roots along the way that cause us to stumble, trip, and even fall at times.  But like on any good hike, we finally make it to a "scenic view" stop where you can see for miles.  Beautiful trees, scenery, and best of all, a breath of fresh air and a pause in the trail. For a little while, we can rest. And just take it all in.

To my other special needs moms out there who are struggling at the moment or facing a setback, hang in there.  The hike isn't easy, and it's especially hard when things happen without explanation.  We have to do so much that is "out of the ordinary" and be such "mama bears" all the time, that when things come out of the blue, it throws us off even more.  It sucks - there is just no other way to say it.  But know that there are lots of us on the hike with you.  When you are struggling or hit a rut in the trail, we are right there.  The falls hurt, but that's just part of it all, so keep on going.  Because there is absolutely no better advocate for your child than you.  And although the rocks hurt, those scenic views are so worth it.  You and I both know that's why we keep allowing ourselves to fall...because throwing on some knee pads and continuing on the trail is the only way we can reach that next beautiful stop to let our kids shine... and reach the potential they deserve.