I Have This Fear That People Think Our Story Is Sad

Guest Post:  I couldn't have said it any better myself.


  Several years ago when my daughter Julia was about 2, I met up with a friend for coffee at Starbucks. We had just settled in to our seats with drinks in hand when two little ladies shuffled by us. Upon further inspection and a little eavesdropping I realized the pair was an elderly mother with her adult daughter, who had Down syndrome. Both my friend and I observed them for a few moments before turning back to each other. I was about to comment on how precious the two of them were when my friend spoke first and somberly said, “Some days you see the sad ones.”  I’m sure my face fell. Sad ones? I had not expected that.

  I don’t remember what I said in response; I probably just tried to move us quickly on to safer ground. But the moment stuck with me. We had just witnessed the very same scene but saw two very different stories.
  I saw happiness and family. I saw something I prayed for in my own story: many more years with my daughter.  My friend saw sad.

***

  I have this fear that people think our story is sad.  That people hear or see “special needs” and automatically categorize us as sad.  And no matter how many times I profess the opposite, some people will continue to think my words are nothing more than a positive spin on a negative story.  And no matter how many different ways I try to explain that Julia is a blessing, people will assume I am simply making the best of a bad situation.

  I fear the assumption will remain for some that we are putting on a brave face to hide our disappointment. That we are somewhere between a saint or a martyr for loving our child. That we are admirable for continuing to put our best foot forward given the hand we’ve been dealt, but the bottom line remains our story is sad and we are the sad ones.
  And while I know I will never change every person’s mind on this, the fear of being so grossly misunderstood drives me to keep trying. Julia deserves that.  So once again, for the record, we are not sad about Julia.
  We are not enduring her, we are not tolerating her, we are not suffering as a result of her. We love her, and we like her. And it hurts when loving her is seen by some as heroic — it hurts because nothing could be farther from the truth. It does not take heroism to love our child — and I wonder what I am doing wrong in telling our story that some would still think this is the case.
  In regards to the compliments we are given, I am grateful for them and humbled by them. I know they are being given in kindness, and for that I say thank you! But I do not make the connection between Julia and these qualities. I hope I would be that kind of person with or without Julia. I have a long ways to go, but I want to be a positive, optimistic, grateful, strong, brave, vulnerable, compassionate person period. Not in spite of something or someone.
  And the same is true when I do not display those positive attributes (which is most of the time). When I am moody, and negative, and anxious, and snarky, and grumpy, and overwhelmed — I am those things by my own doing — with or without Julia. She is not to be blamed.
  If I am positive it is not an act of overcoming Julia; if I am negative it is not to be blamed on Julia.





  If you see any good in me, it is by the grace of God.  And when you see the bad, the fault is my own.
  A lot of people are happy in seemingly hard situations and miserable in seemingly great situations. I think we have to stop assuming we understand situations based on appearances and let people tell us how their story goes — and then believe them.
  My story with Julia is a good one. My situation makes me happy. She is my best gift. She is not the hard part of my life; she is not where I have to be brave or dig deep.
  In her memoir, Lena Dunham wrote this in response to people praising her: “It’s not brave to do something that doesn’t scare you.”
  This is how I feel about my life with Julia. I’m not being brave; she doesn’t scare me.  What scares me is thinking about life without her — that is when I have to be brave.
  A little girl with epilepsy died suddenly two days ago. She had been doing well recently, she wasn’t even in a really bad place with seizures. But she died. Unexpectedly. At the age of 13, while sleeping in her daddy’s arms, because of epilepsy.
  This scares me.  And this is the sad story.  But not ours. Not yet. Not while we are still together.
So friends, will you promise me something?  Will you promise me you will try to fight the thought that we are a sad story? Will you trust that the story I am telling you is the true version? That Julia is a blessing, without qualifiers. And every moment we get with her only makes this story better.
And if, God willing, we are given many more years together, and we get to be little old ladies, leaning on one another as we shuffle side by side through Starbucks, will you promise to think to yourself when you see us go by, “Some days you get to see the really happy ones.”? And that will be the truth.




By Laurie Arnold  Follow this journey on I’m Julia’s Mom.

Check her out!

  The other day my mom was at my house and she was going to take Sadie outside to put her in her wheelchair, as her school bus would soon be arriving.  She was about to walk out the door when Sadie wiggled a little funky and my mom wanted to put her down to readjust her position.  As she was bending over to put her down, Sadie decided to put her feet down. It pleasantly caught us off guard.  Sadie decided to just continue to weight bear on both legs.  Then my mom decided to let go to see what Sadie would do and VOILA! She stood there all by herself, head held high and back straight.  As we were watching her, I was wishing my cell phone wasn't dead so I could take a picture, thinking that by the time I ran and got my real camera, she would have fallen.  However, she continued to stand there like a champ, just staring at me.  I decided to attempt to go get my camera.  Not only did she continue to stand but she followed me with her head, watching my every move.  I came back and snapped a few pictures, then she started wobbling and my mom caught her before she collapsed.  We were in complete shock!  My baby stood!  It was the most beautiful sight.  I was told to never expect anything from her. Here she is standing alone, no one holding her up.  Yes, she was leaning a little on my mom legs, but that was it.  We rarely see her weight bear on both feet, at the same time, for a long period of time without being in her stander.  In the past, and even today as I write this, when we hold her/attempt to stand her, she will either pull up both her legs like an infant, or she only puts one leg down, like a flamingo.  Not sure what came over her at this moment, but I'll take it!  I'm not naïve, I know that this was probably a freak moment, BUT if she does it once, she will do it again.  She's proven that to me over and over again.
   After my mom put Sadie on the bus to go to school, she also left my house.  As I sat there alone, thinking about what I just witnessed, I started to shake from excitement and adrenaline and I cried happy, disbelief tears.  Thinking back to Sadie's first year of life and listening to all the negative things that all these Dr's kept telling me.  How I kept thinking they have to be wrong, I had so many hopes and dreams for my baby and had so much faith in her, but yet got so discouraged at times by what others would say or even sometimes by Sadie's own actions..  All the therapies, all the Dr appt's, all my own therapy sessions with her at home, they are all worth it!  How proud I am of this little girl.  How far she has come.  How she is proving Dr's wrong, left and right.  It was such an over whelmimg feeling.  I don't even know how to describe it.  Every moment, every comment that has been made, every tear we shed,  has all been worth it when I see her accomplish a milestone.

Hope sees the invisable, feels the intangable, and achieves the impossible.  -Anonymous

Goal Met

  For this school year one of Sadie's IEP goals was to be able to tolerate being upright for long periods of times and to sit independently up to 45 minutes.  Check! Goal accomplished.  :)  This little girl is awesome at sitting.  Well sitting in a chair, on a bench, or on her new bed!  Unassisted with no back behind her.

Sitting so perfect and proud!

  We are still working on sitting on the floor.  She's done it a few times, but not enough to say that she has the skill.  Weird, she can't figure that out. You would think that it would be easier because of having a wider base with her legs in a ring shape.  But that's ok, we will continue to work on that skill and use the skill of "chair sitting" for now.

   

Why Dreaming Big Is Mandatory

Guest Post: by Stacy Warden

When you dream big about your child’s future, others around you have a tendency to think you can’t grasp the hard truth in front of you.
Dreaming big doesn’t mean we’re ignoring the challenges that our child faces or the probable outcomes based on medical predictions.
When we dream big we encourage others to dream big with us.

And dreaming comes in all different forms and sizes.

While we all of course are dreaming the ultimate dream – complete recovery and healing for our child with special needs – we have so many other dreams that have the potential to be life altering.
We can dream about the invention of a new product that would make it easier for us to travel, for our child to participate with his or her peers, or assist them tasks needed for independent living.
We can dream about new technology that will allow us to hear our child’s voice, digitally enhanced by using their own vocal sounds to create what their voice would actually sound like if they were verbal.
We can dream about a world that never stares at a child with special needs.
We can dream about government resources and insurance benefits not being so hard to access.

We can dream about lots of things and it’s okay to dream big - because dreams can and do happen.

When we dream big we plant the seed of greatness to grow.
We are challenging the universe to put our intentions into play.
Dreamers are never low on hope because they know that anything remains possible.
People might want to try to convince you that dreaming sets us all up for disappointment on the special needs journey, but I tend to think it’s just the opposite.

Dreaming presents us with recognizing there are endless possibilities, sometimes it even encourages us to chase them.

Parents designing equipment that they know that could benefit those with disabilities; parents knocking on the footsteps of Congress dreaming of changes that will allow those with disabilities to be able to change in public restrooms with dignity, dreams that we can make this world a better place for our child so they will be safe and supported once we are long gone and or no longer able to care for them.
Dreaming is more than okay.
And we need to hold onto all these dreams.
And then we need to find active ways to try to make these dreams a reality.
And maybe secondary dreams could happen in the process; like watching our child sit for the first time, speak “momma” and then form sentences, and then talk non-stop, or be able to transition to eating solid foods… dreams are endless.
Don’t give up on them.
It’s healthy to dream.  

A new bed!

  A while back I wrote a post about looking for a safety bed for Sadie.  As I was looking, I also started to deal with insurance, looking for grants, charities that donate beds, and I reached out to facebook looking for a carpenter.  I was going no where fast.  Insurance is ridiculous!  And I know I've mentioned it in this blog before, but I HATE dealing with them!  They do not care about special needs what-so-ever.  They barely cover equipment or food or prescriptions or appointments.  You have to fight and fight and fight, while they deny, deny, deny and then FINALLY they will "cover the cost", and it's a smidgen of the cost.  Our society has failed our special needs community, but that's for my soapbox story some other time.
  Just as I was feeling the frustrations of going no where, my prayer was answered.  My mother in law ran into her cousin in a store who she doesn't speak to often.  As they got to talking she discovered that he had made a safety bed for his grand daughter, who has cerebral palsy, a few years back.  Bless this mans heart, he said that he would be happy to make Sadie a bed.  He is a retired carpenter and was looking for a winter project.  Could this really be happening?!
  He came to my house and we chatted about all of Sadie's needs and her future and he shared his stories and his love of his grand daughter.  He then showed me pics of the bed that he made for her, It was exactly like the beds I had picked out. He then took measurements of me, Sadie's room and the mattress that she would be using, so that it would be totally customized to our needs.  As he was leaving he stated that it should be done in a few weeks. WHAT?!  A few weeks?  I was expecting to get her bed for a her 5th birthday, that's why I started after her 4th birthday, in HOPES of getting it by her 5th.  I figured this whole process was going take at least a year.  He also said he was only going to charge me for the materials. $400-$800 versus $7000-$10,000. WHAT?! Seriously? God bless this man!  Sometimes in the special needs journey, well I guess any journey, you can get so frustrated that you stop having faith in humanity.  Then something happens and a person appears in your life, and faith is restored.  It's like a breathe of fresh air when you don't have to fight for something.

  A couple weeks ago he delivered and set it up.  It is absolutely beautiful and perfect (and huge and sturdy).  And Sadie LOVES it.  It is a twin size bed.  She can turn circles in this bed without hitting the sides with her head, legs, or arms, like she has been the last 6-9 months or so in her crib.  She can even lay the width of it all stretched out, without hitting the sides.  We love it and she loves it. What else could we ask for?  Thank you Joe, you truly are an Angel to Sadie and our family.

 

 

 

Two Appointments

  At some point in Sadie's month and half of being sick we managed to venture out on her "good" days to see a couple of Dr's, the neurologist and pulmonologist.  Appointments I had been anxiously waiting for since her results from her last sleep study.
  Neurology appointment:  With such a huge change in Sadie's breathing while sleeping, there was a thought that maybe this was regression or deterioration of part of her brain.  That was my main question for the Doc.  After an examination (one that Sadie slept a majority of) and a million questions. It was determined that it was not deterioration.  She is progressing too much in too many other areas for that to even be a question.  Although he really couldn't answer my question as to why her sleep apnea has gotten significantly worse.  We both hymned and hawed over doing another MRI of her brain, but we decided against it.  I'd rather save more radiation to her little body for when something major or a significant event happens.  Over all it was an uneventful appointment but reassuring that he didn't think it had to do with changes to her brain.
  Pulmonology appointment:  This appointment I dreaded, but still really wanted to know answers about her sleep apnea.  I also was "happy" that Sadie was still sick cause I wanted to know her opinion on her lungs/breathing/overall respiratory status. The Dr examined her and said that her lungs were not really that "junky" sounding and that it was more of her upper airway. She just suggested the deep suctioning which is what i had been doing. So that was reassuring.  Then it was on to the main subject.  I think I asked her a bazillion questions, some questions that I don't think she was prepared for and kind of threw her a little bit as she stumbled for words/answers (but that's ok, it keeps her on her toes).  The two topics the we discussed: 1. Was the change as significant as the respiratory therapist made it sound when she gave me the results and 2. is there anything we can do about it?
  Was it as significant of a change as the therapist made it sound?  The answer, unfortunately, was yes.  The Dr explained that all of Sadie's sleep studies have progressively been getting worse, but this one was a huge jump.  A ratio (and no I don't know what ratio it is) doubled itself in 9 months and with that big of a jump it means that the oxygen that she currently wears at night is no longer triggering her brain to breath. Not good.  I knew what was going to come out of the Dr's mouth next.  Before she could say anything I asked her "are we at the crucial point that something needs to change or do we still have room to play with because I am dreading what you are going to suggest".  She paused (for quite a bit) looked over all of Sadie's test results from the last 4 years, "looked back at me and said "Yes, I feel like we are at a crucial point that we need to change something.  That was a pretty significant jump for 9 months".
  The plan:  Sadie is going to have another sleep study, but this time it is for her to trial a c-pap and/or a bi-pap machine for her to wear at night.  These machines do different things, but essentially the point is to "breathe" air into her when she doesn't take a breath on her own.  *sigh* I am truly dreading this machine cause i know that Sadie is not going to be happy with this mask over her nose, nor will she like the fact that she will have a much harder time flipping and rolling around in her bed.  But if we are at the crucial point, then this is what we are going to do.  We are just going to have to make it work.  The Dr did say that sometimes these machines don't help either, or the sleep is worse because of the fighting of the mask and at that point the mask is doing more harm then good.  But only trial and error will tell us what direction Sadie will go in.  So now we wait for the next sleep study.

The last month or so

  Oh my goodness!  It has been a busy couple of months.  As you know Sadie was sick mid January.  High temp, then a wet cough.  Then she seemed to get better for a few days, and then went back down hill again.  At the end of week 4 of her still being sick I called her Dr and they started her on an antibiotic (did I not call that one? She always ends up on an antibiotic). We were guessing at that point she probably had a sinus infection. Who knows if that's what it was or not, but it worked.  A 10 day course of amoxacillin and voila! she's back to healthy again.  Or so we thought.  We had a one healthy week and then back to a high temp and sleepy again.  Really, again?

Yep!  Luckily, it only lasted a week this time and then her body kicked back into healthy mode.   Now we are just finishing up week 2 of being healthy and there are no signs of illness.  Fingers crossed it stays that way, but I figure it's the end of winter and no one in the house is sick right now, we may be in the clear for a while.  One can only hope, right?

  She also developed a new rash.  I thought is was from the amoxacillin at first cause thats when it appeared.  Now I'm rethinking the whole thing.  It's still there.  It doesn't seem to bother her. But it's spreading.  I guess we will be going to the Dr for that at some point.  I think it is exzema.

 

 

 

  So besides Sadie being sick for about 6-7 weeks, I also started a new job.  I've been searching for a "work from home" job as an RN for the past 4 years.  Never actually thought I would find one, but was hopeful.  Well, I found one.  My prayers were answered.  I started the training a few weeks ago (you know, right in the middle of Sadie getting sick again, perfect timing. NOT!).  So in a few months, when I'm deemed competent, I will be able to work from home.  I'm praying this all goes as well as I'm planning and playing it out to be in my mind. Again, only time will tell.

  Aubrie also started basketball.  She's not on a team, just taking classes to learn about the game.  Does that little girl love it!  She is definitely my little sports girl.