SLP Mommy of Apraxia

Category: dyspraxia

  • The Rise

    The Rise

    I have Ashlynn on a new game plan.  We had to take a break from her private speech because of unforseen financial issues in our life, but now we are back and better than ever.

    She’ll be seeing her awesome private SLP again on Tuesdays (who just happens to be my mentor, friend, and speech mom), and then Wednesdays we have insurance finally paying for 20 sessions, which is not to mention the two sessions she gets at school.

    Last night my husband took her in to the new SLP and she was given language testing.  Knowing I would never be satisfied with his summary, he prudently told the SLP to call me personally.  I had already emailed, called and left messages (oops), but hey.  I need to know this stuff.

    Well, tonight she called.  She was lovely actually.  Experienced.  Moms of kids with disabilities will totally feel me when I say, “I instantly had  a good feeling in my gut about her.”

    She told me she tested Ashlynn in language. I was anxious to hear the results.

    Before I get to that.  Let me set the stage really quick.  Two years ago, Ashlynn was tested at school as part of a re-eval.  The ONLY area, and I mean the ONLY area in the average range was her articulation skills, and even then, it was barely.   Language testing was no exception.  The one area kinda close to at least low average was a the receptive vocabulary test where she was to point to pictures depicting certain vocab words.  It was STILL slightly below the average range.

    I was devastated. Despite so much work at home, Ashlynn’s expressive and receptive language skills were tested to be significantly below the average range.  Beating apraxia at that point seemed pointless.  When Ashlynn actually spoke, most people could understand her now, but her language development was so delayed she still hadn’t really found her voice.  She spoke in scripts she had been taught. Sentence formulation consisted of scripts she’d practiced in therapy. If you have any idea about apraxia, then you know how jacked up it is to wish your child *just* had apraxia, and you might have a greater appreciation of just how damn freaking hard that sweet little girl has to work.

    BUT

    Fast forward to today.  The day I talked with this new SLP.  Ashlynn scored a standard score of 90 and corresponding percentile rank of 25 on the picture vocabulary test!!  DEAD average for receptive vocabulary skills.  My heart was leaping out of my chest.

    With a sympathetic and somber voice, she told me Ashlynn had just barely squeaked in the average range for a measure of relational vocabulary, which is telling how two things are alike.  My heart started singing and I think I took her aback.  I had to hear it again. Wait, she scored in the average range for what?? Tell me again.  Well, it’s the low average range, borderline really, but yes……

    I zoned out.  I checked out and started cheering.  OMG.  I work in the schools with her school SLP and this is what they have been working on!!  It’s working!!  She’s doing it!!  We are climbing!! We are RISING!!  We are OVERCOMING!!  I texted her school SLP.

    “Private speech gave Ashlynn the TOLD and she scored in the 25th percentile for picture vocab and 16th for relational. That’s ALL you.  Thank you for working with her.  I can’t believe it!”

    Her response was golden: “I believe it!  Ashlynn needs the gift of time to develop and mature.  Her brain is working hard right now but it will get easier and better!  Proud mama time!!”

    Um…people..cue the waterworks.

    It took me some time, but I finally found Ashlynn’s village.  I can’t help her overcome on my own, but I found a village who not only believes she can, but is helping her to do it.  There are so many working parts.  There is general ed, and special ed.  There is school speech and private speech. There is private OT and school OT.  There is physical therapy, extracurricular activities, and a legion of family members praying for her.

    Most importantly though, there is Ashlynn.  She is a fighter.  She doesn’t look like one, but she is.  That face is deceiving.  She has this understated determination, this quiet ferocity, and this unceasing resilience.

    It’s good to look back and see what we have conquered.  At times though, it’s too overwhelming to look up and see what’s left ahead.  So in this present moment, we will look a few steps in front of us and as my dad always says, “just keep your head down and working,” and one day, we will reach the top.

     

     

     

  • It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    It’s like juggling 8 balls at one time desperately hoping one doesn’t roll away

    There is not one day that goes by I don’t think of Ashlynn’s disability (ies).  As a basis of comparison, I have my four year old son.  He has some concerning behavior issues, and I do think (worry) about them often; however, I do not think of it EVERY SINGLE DAY.

    Apraxia and dyspraxia make that impossible.  There is always something else to worry about.  Something else in which I don’t feel like I’m doing enough.  Let’s take speech.  Her speech is intelligible (hallelujah praise Jesus my baby has her voice); however she also has dysarthria, which makes her overall speech slower, and she has a language processing problem heaped on top of that, which makes it extremely difficult to express herself, even though when she does you can understand her now.  She also has a lisp, which is pointless to work on right now because she doesn’t have her two front teeth.  That will wait, but it’s still on the  “to do” list.

    Oh, but then there is dyspraxia and it involves motor planning issues with gross and fine motor skills, which in turn, affect ALL of her ADL’s (Activities of Daily Living). This includes: dressing, toileting, feeding, hygiene, getting her shoes on the right freaking feet, putting on her pants that aren’t backward, brushing her teeth without it ending up all over the counter, or showering and actually coming out of the shower cleaner than you went in.

    I make her do all these things first independently, despite it taking 3x longer than her brother who is almost 3 years younger.  It would be so much easier to just get her dressed or brush her teeth for her, or shower her;  but I know with motor planning, EVERYTHING is going to take about 1000x more repetitions and because of that, I can’t let her slack.  I can’t do it for her.  I have to watch her struggle and sometimes cry for me to help her, and force her to do it because I know she can.  There are nights it breaks my heart when she begs me to just help her put on her shirt and I tell her no.  I tell her no for her own good.  I know it’s hard, but the brain has more plasticity now and she has to learn how to do these things, and the only way to get better is to do it herself over and over and over.

    I think about stuff down the road.  How the heck is she going to ever be able to do her hair?  She can brush it, but how do I teach her how to get it in a hair tie?  These things will never come easy for her.  She can’t even put a headband on straight. Should I buy a bra for her now and have her start practicing?  The list goes on and honestly, at times, it seems endless.

    I attended an executive functioning training recently, and many kids with global apraxia are going to have issues with executive functioning.  They just are.  Ashlynn is one of them.  There are things to do to help. A lot of things actually, but they need to be put in place.  A lot includes visuals, visual aids, etc.  I sat through the entire training thinking about application to Ashlynn (I was there to apply it to my students in the classroom).  I started stressing that I’m not teaching her these skills and if I don’t, there is only so much the school can do and she will be a mess as an adult.  I need to start working on that.

    Oh..but she has homework, and we need to work on that too because like with everything else, she needs about 1000x more repetitions than a peer and we are the only ones to help her get those reps in.

    Seriously, I just don’t know if there are enough hours in the day. I texted another apraxia mom and I knew she would get it and wouldn’t judge me.  I was right.  She responded,
    “There isn’t a moment that passes.  I hate how consuming it is.  I sometimes feel paralyzed by it.”

    She reminded me that our kids our capable, but they require the BEST of us constantly to be successful.

    She’s right.  All of it.  So here we are.  It’s all consuming. I said not a day, but she’s right, it’s not a moment passes without being reminded Ashlynn has global apraxia.  It’s not one area that’s affected.  Sometimes I wonder what it would be like to just worry about the speech, or just worry about the motor skills, or just worry about homework or just worry about executive functioning, or just worry about language processing.

    That’s not to downplay all the kids who have one or a couple of these problems, but it is to say that each problem adds an additional weight to my shoulders and sometimes it feels like I’m juggling 8 balls in the air and working desperately not to have any fall and roll away.  How do I keep them all in the air?  There is no answer….there is only what Michelle said…this disorder requires the best of us and not just sometimes, but CONSTANTLY so that we can be sure our children our successful.

    Taking pictures for a visual schedule to remind Ashlynn of the steps to going to the restroom.
  • Neurology, delays, a dream, and a miracle.

    Neurology, delays, a dream, and a miracle.

    Most parents of kids who have a child with global apraxia will at some point visit the neurologist.  It’s usually before the age of 7, which is the age Ashlynn is today.

    I remember the referral, although the dates are a little fuzzy.  We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens.  Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard.  Really hard.

    Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it.  The pediatrician, knowing I was in the profession tread lightly.  The result though was a possible referral to the neurologist.

    I declined.

    So curious to me now.  Why did I decline?  Why wouldn’t I have at least gone to the appointment?  The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit.  I pounced on the cop out and religiously massaged her calves every night.  By the time of her next visit, her heel cords were looser and she could flex her foot.  I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral.  Of course I said no.  I could help her.  I could do this.  I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t.  We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.

    Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist.  I actually would have went sooner, but our insurance sucks!  I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do.  We have her in all the right therapies, I would wait when maybe my insurance would get better.  This past year I switched the kids to my insurance plan.  It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.

    Ashlynn’s “ballerina toes”

    The appointment itself was good.  She took our case history, and did an exam on Ashlynn.  She was a lovely
     person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues.  I was so proud.  I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress.    I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.

    She was a resident, so she went to get her supervisor for the final conclusions and recommendations.  The supervisor came in and examined everything she missed.  I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate).  She didn’t say this aloud, but I knew as an SLP that was what she was examining.  They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing.  I nodded my head.  It’s what I was expecting.  I know many, many kids now in the apraxia world and this is the next step.  We want to see if there is an actual cause we can pinpoint for all the motor planning issues.

    Then, this.

    “We would classify her at this point as a developmental delay (insert loss of breath.  Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”

    I just stared back at them.  I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level?  They heard her talk, ok.  They have my case history, ok.  I wouldn’t put her at a 4 year old level based on that.

    “Does that sound about right?”

    I kept staring.  Her dressing skills.  They asked me in detail about her personal care, adaptive skills we call them, and, oh yes.  Yes.  She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….

    “Ms. Smith?  Does that sound about right?”

    I nodded my head.  I couldn’t get any words out.  It felt cruel.  It’s not their fault, it is just the way these appointments are.  I thought of Ashlynn’s four year old brother on the way out.  He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.

    I looked over at Ashlynn holding my head walking out of the hospital.  She was smiling holding my hand, and holding a notebook and pens in the other hand.  Always working that girl.  ALWAYS.  During the appointment she “took notes” for the doctor and gave them to her at the end.  The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level.  Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude.  I wanted to cry, but I won’t.  That’s not to say I’m against crying.  It’s just to say it’s not how I want to process it all.  I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.

    I turned on “The Fighter” by Gym Class Heroes.

    “Just waking up in the morning
    And the be well
    Quite honest with ya,
    I ain’t really sleep well
    Ya ever feel like your train of thought’s been derailed?
    That’s when you press on Lee nails
    Half the population’s just waitin’ to see me fail
    Yeah right, you’re better off trying to freeze hell
    Some of us do it for the females
    And others do it for the retails

    But I do it for the kids, life through the tower head on
    Every time you fall it’s only making your chin strong
    And I be in the corner like mick, baby, til the end
    Or when you hear this song from that big lady”
    One last thought.  My dad has never been a dreamer and he certainly did not encourage us to dream.  He encouraged us to work, stay out of debt, and have a plan B.  He’s a practical man.  I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out.  Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life.   That’s why it was surprising the other day when my mom called me and said,
    “Dad wants to know if you know what Ashlynn’s name means?”  Seems like something I would know.  I didn’t know though.
    “No, what?”
    “To Dream,” she responded.
    We both paused.
    “Wow” I managed.  “Dad told you to tell me that?”
    “Yes.”
    I was silent.  Honestly it was hard to process.
    “He told me the other day too, Laura, he believes Ashlynn will be a miracle.”
    Silence.
    “Wow” I managed again.
    So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”
    So work baby girl, and I’ll work alongside you;  but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.
    My dad with four of his grandchildren including Ashlynn
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  • There is either fear or hope. Pick one

    There is either fear or hope. Pick one

    Life would be so much less complicated if we lived on breaks.  haha.  Yes, that is my opener and I realize it’s not only a statement captain obvious would make, but it’s completely devoid of reality.

    Seriously though, breaks are awesome.  Family comments how far Ashlynn has come.  We are all stress free (well at least from school and work stress).  We can spend time as a family doing things together we wouldn’t normally have time to do.  We’re not in “go” mode all week trying to get to school, to therapy, get the homework done, and all the other million appointments we have.

    I don’t have a daily reminder of how hard things are for Ashlynn, like tonight, doing homework with her again.  Don’t get me wrong, she’s improving…so, so SO much.  It’s just, when we’re doing homework,  I realize we’re improving, but nowhere near the pace the class is going.  I feel like Ashlynn is more keenly aware of it too now, or maybe she always has been and now she can just verbalize it.  Tonight we did her reading, her math, and then practiced her spelling test.  I think she said at LEAST 8 times something like, “it’s just my brain!  ugh.”

    We are not punitive.  We are patient.  We tell her EACH time, something to the effect of, “Ashlynn, it’s okay sweetie.” and I might add, “you have apraxia and also have a hard time getting the words out, it’s okay.  The more you practice the better you’ll get,” but then she’ll stumble on a word again, or say the wrong number when we are counting by tens and hit her head and again announce “Ohhh my brain!’

    Hearing it once is hard.  Hearing her say it twice is hard.  Hearing her say it repeatedly despite our words of reassurance and patience is excruciating.

    Damnit.  Damnit.  I had to walk away and have my husband help her.  This isn’t fair!!!

    I got on my phone and checked fb.  In the apraxia group a woman posted a picture of her son crying while looking at a reading passage.  My heart broke all over again.  Stupid apraxia.  Stupid apraxia.  Ashlynn isn’t crying….yet.  Will she be? Will she get to that level of frustration?

    I was feeling down again.  Two weeks back at school and I feel sad again.  All that joy and happiness of the vacation gone.

    Then I read this.  A blog post by an adult who had grown up having apraxia.  She outlines the day she went back to her old reports and progress reports and how she discovered that in early elementary school she spent 80% of her time in special education. She says the reports all started with how teachers would comment she was a hard worker and tried hard. I immediately thought of Ashlynn.  Every report says that about her.

    She talks about how she just wanted to feel normal.  She says you could see her “subtle progress” through the years as she started spending more and more time in general education.  By highschool she still had report cards that said she was a hard worker and tried hard, but now she had a GPA of 4.5. She muses that she doesn’t even know when that transition from “special education” to “straight-A honors geek” even happened.

    She concluded that apraxia fueled her strong work ethic, and though she is sad she never achieved “normalcy” she decides maybe it was all for the best.

    I needed to read that right now.    I needed to read that because I needed hope.

    You know what drives parents of special needs kids?  You may think it is the love for them, and yes of course that is true.  However, at the core, even on the darkest days, what drives us to face a new day with strength while we hold their hand is….hope.

    Hope is the belief that despite any challenges we may face and how many times life will knock us down, we will wake up tomorrow still standing, still growing, and still achieving.  Sometimes hope may be a flicker, and other times a fire, but as long as it is still there, we will continue to rise

    again

    and again

    and again.

    Thank you Alyson for sharing your story AND re-igniting HOPE.

     

  • SLPMommyofApraxia Top Ten Posts of 2016

    SLPMommyofApraxia Top Ten Posts of 2016

    This year was a little rough on me.  However,  positives and good things still happen in any bad year.

    I personally believe the life we are given, your life, my life, Ashlynn’s life…we are given this life to learn to and to grow.  Christians may refer to this as a “cross to bear.”  I know at times, life has seemed incredibly unfair, but in that unfairness I have met some of the most amazing people I would not otherwise have met, and I have experienced joys I would not otherwise have experienced.

    I hope regardless of why you have found this website, you have left with a better understanding of apraxia.  I thank all of you who read, comment, share, and like my posts.  It helps us to know we are not alone and though I started hoping to educate and support others, I have found that it is I who has also gained from it through your comments and support.

    I also thank everyone who collaborates with me, professionals who reach out to me wishing to learn more about apraxia, and anyone who reads this with an open mind and willingness to learn more about apraxia.

    Here are my most viewed posts of 2016!

    Why I’m angry and even more passionate as we approach the 4th Annual Apraxia Awareness Day:  
    Read here

    Overgeneralization: A Caution for Clients with CAS: Read here

    Anxiety as a Special Needs Parent Feels Like…: Read here

    Feels Like We’re Falling Down the Hill Again: Read here

    Why Would Anyone CHOOSE to Coordinate a Walk: Read here

    Tips For Carryover in Childhood Apraxia of Speech Part 1: Read here

    Guest Post, The Day I Met Ronda Rousey and She Told My Sister to Keep Fighting for Her Words: Read here

    Why are SLP’s Still Using “Mouth Exercises” for CAS?: Read here

    The Do’s and Don’ts of In-Home Speech Therapy: Read here

    Don’t Just Teach the Speech!  The Importance of Co-Articulation in Childhood Apraxia of Speech: Read here

    I started this blog in 2012, and since that time, these are the Top Ten Posts of All Time!

    Her Fight Our Fight: The Day We Met Ronda Rousey: Read here

    Strategies to Promote Speech and Language in the Pre-Verbal or Minimally Verbal Child with Apraxia: Read here

    What is Childhood Apraxia of Speech: Read here

    Why Nature Ways More Heavily Than Nurture: Read here

    Prognosis is Not Just a Funny Word, There’s Nothing Funny About it: Read here

    DTTC: Evidence Based Practice in Childhood Apraxia of Speech. An Interview with Dr. Ruth Stoeckel: Read here

    What is  Your Future Like When you Have Global Apraxia? Read here

    I Failed Her: Read here

    Interview with Reagan: A 17 year old with CAS: Read here

    Interview with Sharon Gretz, Executive Director and Founder of CASANA (apraxia-kids.org): Read here

    Despite any difficulties, I still LOVE this New Year’s picture, because yes, in spite of any pain, something wonderful is ALWAYS around the corner.

    Happy New Year Everyone!

    Laura

     

     

     

     

     

     

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  • Reality check. Once upon a time, I feared I may never have children.

    Reality check. Once upon a time, I feared I may never have children.

    Gratitude.

    Finding gratitude.

    I truly do believe gratitude is one of the most important practices on a path to happiness.

    I’ve been having a hard time lately again. I hadn’t felt this discouraged since Ashlynn was first diagnosed about 4 years ago. I worry so much, and even though we work sooo hard, harder than most people it would seem, we continue to stumble backward. It’s such a terrible place to be.

    I start seeing the trees instead of the forest.  I start counting each star instead of the galaxy.  I start to get consumed in the nuances.

    But then……

    I went for a girls night.  Had sushi and wine with some great friends.  The best friends really.  Girls who have known me…all of me….me before kids.

    There were four of us this night.  I have the oldest kids.  My other two friends have children 2 and under, and the fourth woman was just married and looking forward to becoming pregnant.

    My kids are older now, so I could stay and chat, but the two with young infants had to leave.  I stayed and shared a glass of wine with my friend who had just gotten married.  I asked her how married life was, wistfully remembering that exciting first year.  Her immediate and large smile made my heart happy as a I remembered that feeling through her transparent emotions.

    Her countenance shifted as she detailed the possibility of having PCOS – poly cystic ovarian syndrome.

    My mind raced back to two supplement bottles in my cabinet above my fridge.  I was immediately and surprisingly reminded I had PCOS.  That seemed like a lifetime ago. Memories came flooding back to me in that moment.  Memories I had seriously forgotten.  I read the anxiety on her face.  I remembered it, because I had experienced it myself.  It’s terrifying to think you have a condition that can prevent you from conceiving a child.  In that moment talking to her,  I remembered  feeling desperate, scared, and anxious.  Since I have had two healthy kids, I hadn’t thought of PCOS since this very moment, talking to my friend.  Something that had consumed my daily thoughts I had clearly forgotten about.

    Mind blown.

    It started coming back to me though.  She asked me how I was dx.  I started to say it was based on what I said, and then I remembered I had had an ultrasound that proved it. I asked her if that sounded right and she readily agreed in affirmation.

    Wow

    How had I forgotten that?  I started to remember more.  Oh yes.  Only one of my ovaries was working and they discovered that on ultrasound.  I remember now.  Wow.  Again, how had I forgotten that??

    Crazy

    Crazy because I now have two children.  Two healthy, beautiful, amazing children. I have two souls on this Earth who call me “mom.”

    Insert tears.  “Blessed.”

    Blessed.

    Blessed.

    I realized talking to my friend, until that moment when she was unloading her fears to me, I had completely forgotten about, and written off any memory of PCOS.

    I personally am astonished. I’m astonished because this was SUCH a  big deal to me.  How could it not?  I had a disorder that could potentially cause infertility!

     

     

     

     

    I’ve been feeling down…but in that moment.  In that moment of talking to my friend, I remembered how desperate I felt to have a baby.  I remembered how blessed I felt to kiss this baby…to smell this baby…to nurture this baby as only I could….

    And I remembered how blessed I felt to hold her, to touch her, to smell her and to breathe her.

    My baby girl.  My perfect, sweet, and lovely baby girl.

    I have been so consumed with other things, I had seriously forgotten I had worried about ever conceiving a child. I think back now, and that worry had been so pointless.  I have not one but TWO amazing kids now. I am so incredibly blessed.

    Me and my little man

    It made me think.  I get caught up in the learning, the attention, and the this and the that.  At the end of the day, I’m so grateful and happy my children inhabit the Earth.  When it really gets down to it,  nothing and I mean NOTHING is as important as the fact they are HERE. They are LOVED.  They both give MEANING to my life.  My life is better because Ashlynn and Jace are in it.  Period.  The end.

    I will ALWAYS fight for my babies.  It’s how I am.  It’s in my blood. Perhaps though, I needed to be reminded that I HAVE babies, for that in and of itself is a privilege.  A privilege I had forgotten.

    Suddenly, it put things in perspective.  I remember indignantly refusing genetic testing because I would love and accept any baby no matter what.  I do still vehemently believe this (although in an ironic twist we will probably be pursuing genetic testing for Ashlynn), and thanks to this conversation, I remembered that no matter what Ashlynn’s challenges, no matter what potential challenges Jace has or  will have…. I STILL would have signed up for them,

    just for the the chance to be

    A Mother

    To be their mother.