Showing posts with label ladybugsstory. Show all posts
Showing posts with label ladybugsstory. Show all posts

Friday, June 5, 2015

Hurry Up, Monday...

This morning, I received the phone call giving me the time for Ladybug's MRI on Monday.

At that moment, on the other side of the country, a 19 year old young woman was buried, in part because of the very reason my Ladybug is having an MRI.

I'm a numbers person.  I like research, and stats, and evidence based practice.  And I know the vast difference between the medical situation of that young woman and my daughter's medical situation.

But that fact of the matter is Chiari can be deadly.

Everything has the potential of being deadly.  I told a young mother of a child with cranio just a few days ago that her child was more likely to be killed in a car accident on his way to surgery than he was to die in surgery itself.  I handed over my child to have her skull removed, broken apart, and pieced back together again with confidence knowing the odds were in her favor and that God would protect her.

But our days are numbered.  We're not given a guarantee of anything.  And while I have no fear of the anesthesia, or the MRI itself... I fear what it could reveal.  I fear what the treatment could be.

And on days like today, when I can't push that brain malformation out of my mind because it's staring me in the face on the calendar... I fear what it could cause.

And sometimes, I'm angry.  I've even caught myself thinking, "what I wouldn't give to JUST be dealing with cranio right now."  I see moms freaking out about what to me are simple cases, and I think, they have no idea... I'd love to trade situations.

If you'd told me I'd have that thought 3 years ago, when I first found out that Ladybug had cranio, I'm not sure what I'd have said.  I remember being comforted by the fact that it was fixable.  I remember thinking, it's not diabetes, it's not some sort of chronic condition, it's something you go in, fix, and move on.  Like the rest of the family had done.  I remember telling my family that very thing before I ever got married, that it was fixable!  It was a big deal, but it wasn't... I felt like I could handle it.

But some days... I'm not sure I can handle Chiari.  So I agree with John Newton... "I asked the Lord that I might grow in faith and love and every grace, might more of His salvation know, and seek more earnestly His face.  Twas He Who taught me thus to pray, and He I trust has answered prayer, but it has been in such a way as almost drove me to despair." (And I have thought through this song many times, wondering if I have any right whatsoever to use it because these trials are external, not internal.  But then, with more thought, I realized that every external trial can cause internal trials, by way of doubt, worry, realizing that your words say one thing but your mind's actions say another... so yes, it is applicable.)

Thursday, May 28, 2015

What I Should Be Praying

Once again, my child is challenging and growing my faith.

My mind is spinning, I'm researching symptoms and conditions and treatments.  And my gut is once again telling me there's a problem.  It hasn't been too far off base yet... and this time, the treatment scares me. 

I don't know what to pray for.  I don't know if I should pray that this is just a mysterious pain that goes away and we have a completely normal MRI.  Or if I should pray that there is a tethered cord that explains everything and can be surgically corrected.  Or if I should pray for something more typical like a syringomyelia that can also be surgically corrected. 

I found myself frustrated, stressing out because I can't decide what's the best option.  And then I realized... I love the songs "Bring the Rain" and "Praise You In This Storm."  But when the opportunity presents itself, when the rain comes, and I'm facing a storm... I start stressing, and worrying, and getting upset because I don't know what to pray for.  

What exactly I pray for shouldn't matter.  Because what I should be praying is "Thy will be done."  For strength, peace, patience, wisdom.  




For when we pray, God answers.  And sometimes, we don't like how He answers. 



A Glimpse

I think I received a glimpse into my child's world today.

It wasn't pretty.  It was uncomfortable.  I described it as "my senses have been raped.  Violently assaulted."  


Since the birth of my third child, my womanly hormones have turned vicious. Once a month I turn evil.  I feel insane.  I over-react.  I can't focus.  I don't remember anything I'm supposed to do.  I literally walk in circles like a crazy person.  It's rather scary, especially since I'm the sole care-taker for three rather helpless children.  

So combine that point in my hormonal calendar with the dog not having been let out after he ate dinner the night before, and the fact the dog got into the baby prunes that were set out as a reminder to take them to the food bank, and you have disaster.  I, of course, had forgotten to set up the coffee maker on auto the previous night, so when I went into the kitchen to start the coffee, I had quite the rude awakening.  Thankfully, I saw it before I stepped in it.  

The combination of the foul smell of dog urine and feces, plus the aroma of baby food prunes, combined with the 409 w/bleach that I coated the majority of the floor with, was enough to strip the membranes of my nasal passages.  It was awful.  And to do all that before I had coffee?  After cleaning and fixing my coffee, I tried reading my Bible and calming down.  But I immediately riled back up when I got irritated by something minor.  The springs in the door were squeaking and making a racket.  The kids started screaming.  The dog started barking.  Car doors were slamming.  My shirt was sitting on my shoulders wrong and irritating me.  And I realized I had clinched my fists.  I wanted nothing more than to go into the bedroom, spray lavender scent, and hide.  

Instead, I put on a calming DVD for the kids (thank God for Praise Baby!), poured myself a 2nd cup of coffee, closed my eyes, and put my nose directly over the coffee.  I did some deep breathing, prayed for the Holy Spirit to take over the hormonal rampage on my mind, and after a few minutes of staring at the pretty brown of the coffee and bathing my senses in beauty, I felt much better.

And it was then that it occurred to me... I had been acting like my Ladybug acts.  She doesn't have the hormonal issues that apparently make me extra irritable and sensitive, but that feeling of constant assault, overwhelming smells and sounds... is that what her life is like?  Because if that's how the world seems to her... no wonder she acts the way she does!  No wonder the least thing can trigger a meltdown.  The thought of having to interact with people, of keeping our appointments for that day, had been overwhelming prior to my few moments of beauty.  I have control over what I do; I had the option of cancelling, the option of just not going anywhere.  She doesn't have that option.  She is at the whim of my desires, essentially.  So when she attempts to exert control over any small thing, like buckling herself, and it doesn't cooperate... meltdown city. 

Perhaps, I need to closely consider the effect her environment has on her.  While I have put off any decorating in her room because of the mess that she makes in there, perhaps she needs that room to be calming and beautiful.  Maybe we shouldn't have gotten rid of the Ladybug-cave.  Maybe she needs an area in the house that is all her own, that is calming and soothing and full of beauty, where her senses and nerves can be calmed, rubbed the right way, and she can just chill and relax.  

Thursday, April 23, 2015

What Does SPD Mean To Me?

After reading The Out of Sync Child and realizing sensory processing disorder (SPD) describes my Ladybug far better than any autism spectrum disorder, I mentioned to her pediatrician that if SPD is real, she has it.  And she asked me what that meant to me.

That is an excellent question.  I either think I am crazy, over-diagnosing completely normal childish behaviors, or I feel like no one else has any idea what my life is really like.

So for me, SPD means...


  • As my child gets older, she requires more effort and attention, not less.  She gets physically and mentally harder to parent, not easier.  I look back at nights of colic and think, that was easier.


  • Any mistake costs me time.  A cabinet not latched.  The kitchen not blocked off.  A jar not put away.  And typically, it doesn't cost me a few minutes.  It often costs upwards of 30 minutes, sometimes more, by the time I clean both the child and the surroundings, in addition to the cost of the item wasted.  There is NO room for error. 

  • I must weigh the need to go to the bathroom or anything that takes me out of sight of the kids against the risk of finding mayhem when I return. This means simple things, like showers, toileting, personal hygiene and maintenance, must either happen at 6am or it doesn't happen at all.
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  • Every event, every day, is approached with "how will she cope with this?"  Meltdowns are more likely after social events.  I decide whether or not the benefit outweighs the possible consequences.  Changes in plan are often accompanied by screams and resistance.  She may appear very placid in public, but when we return home, the windows may rattle as she apparently simply can't cope with anything else.

                                                                
  • I am to the point of deciding my time would be better managed by devoting myself 100% to my children during their waking hours, rather than trying to get anything accomplished around the house.  Because if my attention is elsewhere, she is likely causing mayhem that will take even longer to repair.
     
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  • I am continually running on empty.  I am mentally exhausted.  I am constantly trying to come up with things for her to do, ways to stimulate her senses and meet her seemingly unquenchable desires.  Ways of handling her meltdowns.  Forms of discipline and training that will work.
  •                                                   
  • I struggle with hope.  Because things are getting harder.  I look forward to her being in school.  But I wonder if I will need to home school, and how in the world will I do that?  Every time I've thought things are getting better, they've stopped improving.  And I try to focus on what has gotten better.  Such as, she is no longer obsessed over closing doors.  Yet what has that been replaced by?  Painting herself in oatmeal & Nutella. Can we go back to the door closing?                                             
  • I feel guilty.  Because I'm living the life of which I dreamed.  And yet... I can't wait for bedtime.  I want to enjoy my children.  I reach the end of the day and my creativity and patience are long gone.  I feel foolish for having so many children in so few years.  I could never have known what it'd be like, and I wouldn't trade any of them, but I still sometimes feel guilty for putting them through a childhood like this. 





     This is part of why I have started making extra effort to get pictures of the grins that come when she's enjoying something.  Because I need that visible reminder that something I'm doing is working.  That I'm not making her miserable all the time.  And I take pictures of the messes, because as much as I'd like to forget them sometimes, I want to remember so that when my children are grown and I see a mom struggling, I will remember that these years that are supposedly awesome can be really tough.  
And I am aware that every child has their own unique challenges.  Just about all kids get into things.  Many kids enjoy getting dirty.  Most kids pitch fits.  And 3 is a tough age.  Each individual thing depicted in the pictures above, for example, is not what bothers me.  It's all of it together.  It's the daily, multiple times a day, stuff that exhausts me.  Perhaps, in another year, I'll say to myself "you really were nuts.  She's grown out of all that and is a completely normal kid and you over-reacted."  But in the meantime, if using techniques created for kids with issues helps, then I'm going to read those books and use those ideas.  

Sunday, March 2, 2014

Results of the Eval

The girls and I survived our solo trip to Billings this week; three years ago I would never have imagined I'd travel 5 hours alone through the middle of nowhere in my 3rd trimester with two toddlers.  Now... eh. Box of extra blankets/winter gear/kitty litter in the back, DVD player propped on the armrest for the kids, box of snacks in the front seat... And I've got the getting into the hotel alone down to a science! I was so thankful, though, that the roads weren't as bad as I'd feared they'd be.  Billings got over 6 inches of snow just a couple days before we arrived, and was supposed to get another 6-12 inches the day we left, but I only drove about 15 miles with scattered ice/packed snow, except for the side streets which were still completely covered.  Thankful for prayers and sunshine!

So, the autism evaluation.  I'd been dreading it since November.  But I left completely happy with the results, which were... nothing!  They didn't make a single diagnosis.  No label.  *happy dance*

Here's what we did learn. (Which, I must brag... is exactly what I'd said after my own research.)  She's delayed.  Well, duh.  She has several red flags for autism spectrum disorders.  That is what people who are only around her briefly focus on.  However, there are two categories required for an ASD diagnosis.  One is social interaction/communication.  This is where her red flags are.  She definitely has problems in this area.  The second is behavioral rigidity.  This is where we find the classic sign of lining toys up instead of playing with them.  And while she does show a few problems here, she displayed none while she was being evaluated.  So they do not feel they can diagnose her with ASD at this time, and feel doing so or putting any other diagnosis on her would be premature, since she'll be having surgery that may impact her delays. 

I am perfectly okay with this.  Normally, I want answers.  But in this case, I want the treatment first and then we can consider if answers are actually needed.  They would like to see her back 6 months after her surgery to re-evaluate and see what's happened.  I'm all for this and think it's great that her progress (which I fully expect to see) will be documented so well.   

So a bit more detail... my report on her behavior does indicate some of the behavioral rigidity that is needed, but I didn't feel she exhibits enough to put her on the spectrum and they agreed with me.  I frankly feel that the difficulties she has in this area have been caused by us as parents.  I mean, you can't take a child through 4 different houses in a single year and expect her to come through completely unscathed.  In addition, she is my child.  And she's her daddy's child.  And we both can be a little OCD.  We're talking the child of a mom who sorts her M&M's by color.  The child of a dad who breaks his fries into two even lengths and then swirls them in the ketchup in a very certain manner, twice one way and once the other, before eating them.  So if she wants to line up her Teddy Grahams before eating them and insists on all doors being shut, I think she's entitled to do so without being labeled as autistic! And for once, the medical world agrees with me.  *sigh*  What a refreshing change! 

As for the social communication area, this definitely needs some work.  I knew she was weak in this area and that's why I was willing to go through this eval, in hopes of getting some tips on what I can do to help her.  She needs a different mother.  I'm a very reserved, sedate type of person.  But Ladybug doesn't respond well to that.  As the child psychologist discovered, she is perfectly capable of totally ignoring that type of person.  But the more animated and dramatic she got, the more Ladybug responded and interacted.  So I am going to have to work on that myself.  Ah, what we do for our children... =)  This will also be important for me to keep in mind if we ever have a choice in her teachers/therapists.  

Her communication is of course a problem area, but I was pleased to hear they feel she is "primed for language development."  It pains me that we are in an area where there is no speech therapy available until age 3; if we were in TN, she would be in speech no doubt.  But since we are where we are, they gave me some tips and resources that will let me help her myself until she's old enough for professional speech therapy.   At this point, despite the fact she is very difficult to understand, they said not to worry much about articulation but to just focus on expanding her language.  I've always practiced the "no baby talk" rule because I believed that was best for language development, but apparently, at least in Ladybug's case, I need to revert to toddler-speak.  Because she will repeat back anything I say, I'm to break my sentences down to 3-4 word phrases.  Then, when she repeats back 2-3 words, I can repeat what she said and add a word, and so hopefully get her to build her phrases.  

This sounds incredibly easy, but it's hard to put into practice!  For example, she's no longer in a crib but if she were, I'd go get her and normally say "Are you ready to get up?  Are you hungry?  Do you want to eat some breakfast?"  Instead, I need to break that down to the bare essentials.  "Ladybug want out?  Ladybug hungry?  Ladybug want eat?" And give her time to repeat back each phrase if she will, repeating back with correct pronunciation what she said and adding an additional word.  And at some point practicing "me" vs "you" and trying to connect those prepositions for her.  Perhaps this comes naturally to some people, but after speaking to her in full adult language for 2 and a half years, this is a hard habit to change!

Her weakest area was actually pretend play.  You never realize until you go through this with your child how important pretend play is for development.  When they told me what she's "supposed" to be doing I was floored.  I've been thrilled to see her imitate any pretend play at all.  But, the heartbreaking yet awesome thing is her play peer would be ~18 months.  Well, I have one of those built in!  I expressed concern about the complete lack of interaction with other children, despite how well she interacts with adults, and they explained that if I have her in a room with a child her age, they are so far ahead of her in their play skills that they are going to ignore each other.  What I need to do is focus less on age and more on skill level.  This isn't a case of the child 4 steps ahead of her being able to help her along like I thought; I need a child who is at most one step ahead.  Turkey is the perfect play partner for Ladybug.  And the examiners showed me some very practical ways that I can encourage interaction between them and help Ladybug to that next level of play.  

Overall, I was very impressed with the evaluators.  Not once did Ladybug show stress by her hand/mouth movements or biting herself.  She actually had fun.  I could tell she was mentally worn out towards the end, but the way they handled everything meant no meltdowns.  They provided excellent care for Turkey, thankfully by a retired RN who recognized that she was really sick and had the developmental pedi take a look and listen to her to make sure we were safe to head home.  (Pretty bad reaction to her 2nd flu vaccine I think)  And they explained their decision about diagnosis so well and gave me lots of practical tips to take home.  We kind of wondered if we were wasting our time since we're having surgery done no matter what at this point, but I definitely feel it was beneficial.  Plus, the developmental pedi fully agreed that surgery out of state is the best option for us, which was nice to hear. 

Wednesday, February 26, 2014

A Mother's Thoughts on a "needs surgery" email

How do I describe the thoughts and feelings I experienced when I got the email saying my daughter needs surgery?

What mom wants to hear that they're going to take the back of her child's skull off?  This isn't like putting tubes in ear drums.  This isn't like getting put to sleep for a non-invasive test.  This is big, to quote Barney Fife.  This is a procedure that's only done one place in the entire USA that we know of.  This is bloody.  This is painful.  This is messy.  This is expensive.

But this is her chance.  This is what I've fought for, since I first found out she had closed sutures at 15 months.  I didn't know this procedure exactly was what she needed, but I knew something needed to be done.

And incredibly, or maybe it's not so incredible given the last few months, when I got that email, I had peace.  Finally.  Despite probable out of network doctor.  Despite being in Texas, which is a long way away from Montana.  Despite facing balancing a newborn baby and a fresh post-op child through Denver airport, which wasn't the kindest to us car seat-toting parents. Despite having no idea how to handle caring for Turkey, who may very well be upset at seeing her big sister unable to jump on the bed.

It'll work out.  I really believe that, just like this crazy move to the middle-of-nowhere Montana, God has opened this door.  And He's closed the other ones.  I think He gave me a brain and a gut and when I no longer feel comfortable, it's time to move on.  In all honesty, finding this doctor, knowing to check for this particular brain malformation, was a fluke.  If I'd just trusted our first doctor, none of this would be happening.  And I think God's had His hand in this.  And His hand will see us through... through the insurance battles, the airports, the surgery, the recovery, the medical bills... It may not be pleasant.  Just like the move out here hasn't always been pleasant or easy.  Sometimes, you have to deal with grey shag carpet in the dining room and kitchen sinks that don't like to drain.  There may be challenges with what we face now.

But He is in control.  He is the Great Healer.  And He is going to take care of my child.  And while I need to believe that no matter what, I must admit, it's a great comfort to me to know the name of the person He's going to be using!

I'm taking her on a trip for her autism evaluation starting tomorrow.  Last week, I was dreading it.  I didn't know how I was going to get through it without crying.  Now, I no longer fear it.  They can say whatever they will.  I know the doctors say they can't promise anything, but I believe this surgery is going to give my child a chance to learn and develop like she did in December after her skull changed shape overnight.  There will be things to work on, but whatever label they want to stick on her is not the end of the world for me anymore.  I have hope.

Thursday, February 20, 2014

Who do you really trust?

I was on my hands and knees picking up craft pompoms, pretend baby bottles, shape blocks, and puzzle pieces. (btw, this is horribly painful when you are 36hrs post-TDaP shot.)  The house was silent, which is a rarity.  Pandora had timed out, the Mechanic was at EMT class, the kids had gone down easily at 1900.  And a song phrase ran through my head that I'd been pondering off and on since hearing it this morning.  I'd first been introduced to it at our church the first week in Glasgow, but it'd been quite a while since I'd heard it.

"You are peace, You are peace, when my fear is crippling."

I've been in desperate need of that peace.  My fear, my anxiety, has gotten to the point of crippling.  I've needed to cry and release some of the tension, but I haven't been able to find that release.  The anxiety is too deep to be released by crying over some sappy movie or song.  But finally, as I sat on the couch this afternoon, holding my phone with the MRI report and a notebook next to me (those things have been within arms reach of me pretty much constantly since Monday), a few hot tears spilled out.  I was sitting there thinking how there were tons of things I needed to be doing, but I couldn't focus on any task long enough to finish.  I was so angry that this doctor wasn't calling me back.  I blamed him for my failing my glucose tolerance test.

And I wanted to know, where is this peace?  Cause I didn't have an ounce of it.

And while picking up the swath the two toddler hurricane had left behind, it occurred to me.

I'm placing my trust in doctors.  We pray every night for the doctor to call us and tell us he will help Ladybug's head so she can learn easier and not hurt.

And while you do need to trust the doctors who are making sure your child continues breathing while under anesthesia, and you really need to trust the doctors who are slicing your kid's head apart, ultimately... while they are tools, they aren't the healer.

I'm angry. I'm frustrated.  But, this doctor is not the end-all of my child's healing.  God can use him, if He so chooses.  Or God can slam the door shut in my face and say no, this doctor isn't going to do surgery on your child.  Or God can say no surgery at all.  He can heal her without surgery.  He can chose not to heal her at all, with or without surgery.  I'm trying to play God.  I'm trying to manipulate circumstances in the way I see fit.  That is part of my job as mama bear, in a way... but I also need to realize that I'm not completely in control.  And neither is the doctor.  And neither are the two, or three, of us put together.

The only way I'm going to get peace is to realize that God is the one in charge of my child's brain and skull, not me.  Not the doctor.  Not the other doctor.  Not the other other doctor. And I've got to trust Him enough to be willing to say, You know best, and I chose to trust You.

Nothing can prepare you for parenting...

Monday, February 17, 2014

A Chance

I sat in the floor and listened to her. And I could understand almost everything she said. We had a simple conversation, about stacking blocks and her little brother and a fellow playmate' s snazzy boots. I watched him pretend to drive a truck, and then pretend to fix the roof of the truck, or had it turned back into the slide house again?

When I got home, after I fed everyone lunch, I pulled her into my lap and squeezed her.  And I held and kissed her head, for once not feeling the lumps but thinking only of the heart inside that little body.  I hope and pray for now she has no idea.  It may be hard to believe given all I write, but I honestly forget how different she is.  I'm not interacting directly with her age often, so I don't realize what a gap is growing.

Is she oblivious? I hope so.  How long will she stay that way?  Will she be able to make friends?  I talk about her new friends, try to learn their names so I can talk to her about them in hopes that calling them friends will create reality.  She won't be two forever, and it doesn't take long for little girls to form cliques.  They throw daggers far too early.  How long will it be before they're thrown, and before she realizes she's excluded?

This is why I'm fighting for surgery. I want her to have a chance. A chance to develop normally.  A chance to be able to communicate and build friendships with her peers.  A chance to learn without having to struggle for every gain. I know there are no guarantees. I know there's a risk of complications. But if something doesn't change... how behind will she fall? How isolated will she be?  And how much hurt will her heart experience?

I'm trying to teach her to hug.  To teach her to give and receive affection.  Because just giving her affection isn't working.  But I can't teach everything.  I need her to have a chance of absorbing it, the way her sister does.  I'm not asking the doctors for a miracle. I'm just asking for them to give her a chance.

Monday, January 27, 2014

The latest...

So I know there's a way of organizing posts into nice little sections... need to figure that out.

This is a newsy post, mostly a record for myself so I have some context for my other posts.

The latest thing in the family is the ordeal of trying to get Ladybug's head taken care of before Squirt gets here in 14 weeks.  (Yes, he'll get another nickname once he arrives.)  At the moment, we have her on antibiotics, allergy medications, and must-be-made-of-gold ear drops in an attempt to clear up some sort of respiratory infection and rid her ears of fluid.  This is so we can then get clearance to have her put on a ventilator for her brain MRI.  She's been sedated 3 times before, but each time she's continued breathing on her own.  This time, though, I suppose because it is a longer procedure, the sedation is going to be deeper; they will actually have to insert an artificial airway and breathe for her.  When I found this out my mommy heart skipped a few beats, but then my medical side took over and realized it's okay.  This is what I'm told they'll be using, called an LMA (laryngeal mask airway); it's between a bag mask and full intubation. I've played with these in CPR/ACLS classes; fun stuff till it's real.
http://emedicine.medscape.com/article/82527-overview#a09

http://emedicine.medscape.com/article/82527-overview#a15
Basically, if she goes under and gets ventilation with any sort of cold/illness, it runs the risk of turning into pneumonia.  An adult can be told to deep breathe and cough; a toddler, not so much.  When I try to get her to cough on command, she gives me a little fake cough which doesn't do diddly squat for her lungs.  She's not been completely well since we landed in TN over a month ago, so as much as I want to hurry this along, I know waiting is probably best.  She certainly doesn't mind taking medicine; she loves the stuff, which is sort of disturbing actually...

The worst part of trying to get her well is keeping her from picking up any other germs.  There have been 3 cases of whooping cough confirmed in the county since January, and not vaccinating is pretty popular up here. (not going there not going there not going there)  We're vaccinated, but that can't guarantee 100% protection.  So basically we're going to be staying in for the next couple of weeks, which I hate to do but don't feel I have much choice about.  If I thought she wouldn't have been disappointed, I'd have kept her out of the nursery this morning at church; she's a creature of habit, though, so going to church and not going to nursery to play might have caused some issues. But no library story hour, no play group, no museum, no starting day care one morning a week like I was really looking forward to...

The reason behind all this, if anyone ever reads this that doesn't already know, is that we are looking for signs of increased ICP (intracranial pressure).  The best of the best doctor in the craniostenosis field gave me some suggestions for tests after I emailed him a brief history and some pictures and CT images of Ladybug's head.  One test, a basic eye exam, we do routinely anyway; another test, an rVEP, which is basically an EEG while looking at a specially designed moving pattern, can't be done in the state on pediatric patients.  So that left us with an MRI, which our "local" cranio doctor had also mentioned as a possibility at her November appointment.  I'm having our local pediatrician order the test since I haven't heard back from our "local" cranio doctor about the radiologist's opinion of the correct CT scan. 

I feel I'm walking a bit of a tightrope at this point... doing what I feel is best for my child while risking making medical professionals angry with me.  This is either going to cause them to respect me, or it's going to cause them to dislike me which may or may not spill over into their treatment of my child, possibly children if Squirt also has this issue.  The doctor I know I'm not making mad is in Dallas, and that's a bit of trek to make... but if that's the best person to treat our children, then we'll do it.  

But back to the increased ICP... I'm unsure just how much they can tell about that from an MRI.  I know they'll be able to tell how much space between her brain and her skull there is; how definite they are about how much there is supposed to be at this age I'm uncertain.  They will be looking specifically for a condition called a Chiari Malformation.  This is where part of the brain, the cerebellum, is pushed down into the spinal column area.  This is not a good thing... when you start squeezing the brain enough to cause that, you have issues.  From what I've read, this is prone to happen when the lambdoid and sagittal sutures are closed, which Ladybug's are at least partially.  Also according to my research, this can cause symptoms that can be mistaken for autism, and these symptoms can wax and wane depending on the ICP at the time.  Hm... sounds a lot like Ladybug to this mama.  I'm not positive she has this, but it's a big enough possibility that I feel this test really needs to be done.  
http://www.chiariinstitute.com/chiari_malformation.html

If something is found wrong on this MRI, it is quite possible that we'll need to act quickly to correct it.  Since I'm 25 weeks pregnant now, this is why I'm pushing to get this done ASAP.  If my child needs surgery, I need to be there with her.  But I'm 5 hours away from any place that could do anything she needs, potentially 1,500 miles from a surgeon who will do what she needs. And traveling after 34-35 weeks is pretty frowned upon... On one hand, I'm upset that we were shorted an entire month thanks to a mistake, but on the other hand, had the mistake not been made I might not have felt the need to even do this test without the "local" doctor saying we needed to do it. Once we're on the other side of this, assuming there is another side, I might go into more detail about just what I've dealt with in the last two weeks.  Suffice it to say for now, it's been ugly.  

So that's what has consumed me most recently.  Turkey is just along for the ride, using her grin to endear herself to everyone but fully capable of bursting into a full blown lay down in the floor kick her feet fit at any moment her will is challenged.  Every child is challenging in their own way... parenting is a wild ride!  And Squirt, as far as I know, is just hanging out, packing on ounces and inches, practising to be a soccer player. Hopefully I'll have packed on a few pounds myself at my appointment tomorrow; just hope I haven't overdone it and sent myself into GDM!

Thursday, January 9, 2014

That Mother

"I'll become a skull CT, and you won't understand me," says Baby Bunny.
"If you become a skull CT, I'll learn to read you, so that I can understand you," says Mama Bunny.

I am looking at CT scans online, so that I can learn to identify a closed suture from an open one, and maybe even a patent suture from a non-patent one.

I'm sure this makes radiologists and surgeons cringe.  They go to school for 4 years, and then train for an additional 4-8 years to learn to read these things.  And this mother thinks she can do a better job than they can?

Better? No. But does that stop me?  Nope.  Because the only way for my child to get the care she needs, is if I know enough to question.  And if I do question.  And express doubt.  And get very specific.

I am becoming that mother.

In a perfect world, I wouldn't have to be that mother.  I could trust that everyone else cares just as much about my child as I do.  I could trust they're double checking names and medical record numbers and dates of birth.  I could trust they're keeping in mind the age of my child at the time of the test, not just her current age.  I could trust they're putting her as a priority.

It's not a perfect world.  In an imperfect world, boob enhancements and nose jobs take time and brain cells away from my child.  And mistakes get made.  Honest mistakes.  They happen.  I get that.  I worked in a doctor's office and know how things get lost, people get sick and take vacations, things get shuffled to the bottom of the stack.

And that's why I'm here.  That's why I'm that mother.  Because I want to know that my child is getting the best care she can have.  Because by trusting you, a human, I'm assuming you care just as much about my child as I do, and will be just as careful.  And while there's a time and place for that, this is not that time.

Hopefully this will make me a better and more understanding nurse in the future.  For right now, though... I pity the medical staff that treats my child, because they're going to have to deal with me, and I'm on the warpath for some answers.

Tuesday, November 19, 2013

A Mother's Reaction to the Journey to Answers

I'll admit, I shed some tears that night.  I'd figured I would, no matter what I was told; pregnancy makes me prone to crying.  But after battling to get her to bed that night, when I would talk very seriously to her and she'd just smile and laugh, I began to loose faith that this is just normal toddler behavior.  I began to realize how out of control I'd begun to feel, that I was losing the ability to reach my child, to connect with her.  And it may be normal, I don't know.  I've never had a toddler before.  And every child is different.  But having yet another person say the word, and losing all my arguments against it, my defenses crumbled.  Because my arguments against it aren't from a maternal instinct of what is or is not true about my child.  They are from a selfish instinct.  The instinct that says, I am not ready to be the parent of an autism spectrum child.  That I can't handle a mental problem.  I feel I can do surgeries.  I can do medical.  I may not want to do it, but I feel confident that I can learn to manage medical situations.  But mental... psychology was my least favorite and worst subject in nursing school.  I didn't get it.  I hated those clinicals.  I want to understand my child.  And I don't understand autism, or PDD-NOS, or auditory processing disorder, or any other diagnosis that might be on the table right now.  And that scares me.  How can I raise a child I don't understand?  That thinks and processes differently than I do?

And my reactions in the past week weren't helping my thoughts.  I'd gotten so frustrated that it felt like I was talking to a brick wall.  That we weren't able to do a simple task that she'd been capable of doing just the week before while she was in her "lights on everybody's home absorbing everything" phase. (She does this every so often, times when it seems like she can hear and she reacts and responds and is, well... normal.  And they always give me hope that she's going to catch up soon.  And then she goes back into her world, often for months on end.) And I remember thinking, sitting there in the floor surrounded by Cheerios, that I hoped she had a hearing problem so that I'd know that the reason she was sitting there staring blankly and not moving was because she wasn't hearing my instructions.  She was just in her own world...

And I've said that so many times.  She's just Ladybug.  She's in her own world.  Leave her in her own world and she's perfectly content.  Interfere in her world... she might take kindly to it and she might not.  But I don't want her to be in her own world.  I want her to be in my world.  I want her to see what I see, hear what I hear, enjoy what I enjoy... I want to connect with her.  To understand her.  To know her heart.  Not in some sort of controlling way, but in a loving way.  So that I know how to help her.  And I think that's what scares me the most about this journey we're embarking on.  That I won't know how to help her.  That she'll be beyond my reach.  That she'll stay in her own little world, and I'll be shut out.  And when she's frustrated, and crying, I'll be clueless to know how to reach her.  That what I do will only make it worse.  And that kills my mother's heart.

Today, the llama and sheep and goats came to our side of the field, and got up on the dike so that we could see them.  I grabbed the girls and went out in the chill, bare feet and all, to see the "amina" (animals).  I sat them on the porch railing, and we watched them.  And they watched us.  And we talked about the llama mama, and the sheep that say baa, and the goats that say meh.  And she smiled.  And she and I looked at the same thing without effort.  And she repeated the names and sounds.  We connected.  Side by side, not face to face, but I'll take it. And I treasure those moments.  Because yesterday, nothing I did could reach her.  We talked.  We disciplined.  We distracted.  And nothing worked.  And I felt that distance so keenly when Turkey stopped sobbing and melted into my shoulder the instant I picked her up, pure love.  Some of that, I'm sure, is just toddler.  It's two.  Or personality.  I was never a loving child.  But I can no longer hold fast to the idea that there is absolutely no other issue with her outside of pure medical science.  Because I don't know.

And what little reading I've done has said one thing loud and clear: early treatment is the closest thing to a cure you'll get.  Waiting only makes things worse. So when our EIst called this evening to ask how quickly we wanted to move forward, I told her to go for it.  I want the assessments done, all of them, to get as much information as possible so that we can help her the best we can.  I've heard of autistic kids "slipping away" and I don't want that to happen.  I don't want the feeling of not being able to reach her to get any more frequent or desperate than it already has.  If we do the assessments and she's negative, awesome.  But we have to know... we have to try.  Even though it hurts so bad to admit it.

The Journey to Answers...

So I'm unsure how much to record here... detailing the lives of our children is a new problem my generation of parents faces.  Before, the most you'd do was in baby books and journals, which could be burned if necessary, but now what we record is forever saved on some hard drive or cloud or archive that I don't understand.  So if things disappear from here, I may be moving them to a more private location, or deleting them from the readily accessible web.

Our time in Billings was much more productive and overwhelming than I'd anticipated.  We saw five different doctors in addition to the sedated ABR.  So here are the results...

The ENT was great; tall and skinny so I guess he reminded her of the Mechanic since she let him pick her up.  He cleared her for anesthesia and made sure her ears were in good enough shape for testing, since she had a cold.  He mentioned a possibly dairy allergy... apparently dairy allergy can cause problems with hearing/ears without other strong symptoms like anaphylaxis. With her peanut allergy and eczema, other allergies may need to be considered, especially with the amount of dairy she consumes.  Something to check into...

The audiologist was also terrific.  She was able to do the sound booth test, which Ladybug failed, checked her tubes, which are functioning fine, and was even able to do the ear-bud test that we'd tried twice and hadn't been able to do.  But, the results, while not as bad as the soundbooth, were still abnormal enough to justify doing the sedated test, so off we went to meet the anesthesiologist.  Amazingly, Ladybug had only asked for milk once despite being NPO since 8pm the night before.

The hearing test was functionally normal.  There is a mild hearing loss in a certain range of frequencies that does not impact communication, either the ability to hear voices or to learn to speak.  So, we have no need of hearing aids; yay!  They do want to continue monitoring her hearing because of the cranio, I suppose, and the partial hearing loss to ensure it doesn't progress into something that would affect her.  But for now, her hearing is essentially normal.  When I say her name, or give directions, or say a word, she is hearing me.

The question then is, why are we not on track with her communication?  Why has that consistently been behind?  When I asked the audiologist who performed her test, she told me that we don't know precisely what she is hearing, only that the sound is reaching her brain and the brain is reacting to it.  She may be "misinterpreting" the sounds... whatever that means.  I don't know if she can misinterpret to the point of hearing Charlie Brown adults, or if misinterpreting means she doesn't recognize the difference between my voice and the hum of the refrigerator.  But, regardless, the problem does not lie in her ears.  It's not a simple medical issue.

Physically, she did great with the anesthesia.  They had to stick her at least four if not five times for the IV, which they finally got in her foot, but thankfully I wasn't there and she was already asleep at that point.  They gave her Versed to chill her out before the procedure so they could get her sedated easier, and it was actually kind of funny.  Poor little thing was sitting in this giant hospital recliner with her doggie Wubbanub, and her bunny, and her new hippo the surgery center gave her, and she started just falling over to the side.  She'd get this glazed look, and then she'd rouse and try to babble or watch the cartoons, but then she'd glaze over again and start slumping.  I told them I needed a prescription for that stuff to go home with!  It'd sure make car trips a lot easier!

Our cranio clinic was the part that was a lot more than I'd expected, but that was a good thing.  I feel confident that these people are going to do what is best for Ladybug without me having to hound them every step of the way, persuading them that something is going on with her.  Our first visit was with a geneticist; despite the known genetic mutation, we'd never seen a professional in this field.  He took a detailed family history regarding the cranio and any known developmental delays, and found it interesting that despite multiple cranio patients in the family, developmental delays have not been an issue for anyone except the first to have cranio, whose mother was told he was going to die because they didn't know anything about cranio or the surgeries to correct it.  He wants us to come to a genetic clinic in his office to discuss further testing to search for other mutations that might explain the delays.  He said even a small inversion can be enough to cause problems, and with one mutation already documented, the idea that others might have problems isn't far fetched.

The second visit was with the actual cranio surgeon.  I was so pleased... while I didn't get exact answers, I got someone who is going to dig a little to figure out how best to help Ladybug.  He had a great bedside manner with Ladybug, interacting with her to try to make her comfortable.  The most refreshing thing was he said we had done the right thing as parents to push to keep her monitored when we felt something was wrong.  It was so encouraging to hear that we've not lost our opportunity to fix any problems, and that he's looking past the textbook cranio of "obvious within a few months, surgery in the first year, or no problems" to consider the strange history of our family.  He differentiated between "functionally closed" and closed sutures, which cleared my confusion regarding when sutures are supposed to close.  They "close" around 2 years of age, but they are not "functionally closed."  They are able to continue expanding until a person is in their 20's. So the question is going to be, are her sutures "functionally closed" or did they just close early but are going to continue allowing her head to grow.  Right now, her head is at the 50% which is great, although I need to look back and see what her head circumference percentiles have been from the get-go.  He is going to obtain the actual CT images rather than just the reports to decide for himself if he thinks there might be a problem with compression of the brain.  Compression could cause delays, and would need to be dealt with.  He's going to see her again no later than 6 months, sooner if he sees something in the CT that needs to be addressed more quickly.  (This is the CT from this past January.)  Depending on what he sees, she may need an MRI to check the brain itself.  That means another sedation... sort of hoping that isn't needed!

The last visit, and the most overwhelming, was with a developmental pediatrician.  She wasn't originally scheduled to see this doctor, but after hearing a more detailed history from us and interacting with her they felt she needed to be seen.  I'd thought of trying to locate a developmental pedi after the practically normal hearing test of the previous day, but wasn't sure how I would find one being in Glasgow where we're short on actual pediatricians.  I have no problem with family doctors, that's who cared for Ladybug for the first 18 months of her life, but when you get to this point you need something a little more detailed.  Thankfully, that was worked out for me without me having to say a word!  This doctor observed Ladybug while asking us some questions and reviewing her history, and then asked "has anyone mentioned the possibility of autism to you?"  I cringed.  Yes, they have, and I've pushed that possibility out of my mind and out of her charts.  I was insistent that we not consider that until we dealt with the medical issues of hearing.  But now that hearing is off the table... I couldn't push it away any longer.  But I had to argue, just a little.  She's affectionate.  And Ladybug conveniently hugged the Mechanic's legs to prove my point.

And the doctor agreed, yes, she's physically affectionate, but not mind affectionate.  Huh?  Normally, I'm on top of the terminology in medical offices, but this one I'd never heard.  She pointed out that Ladybug had yet to look either of us in the face, wasn't making eye contact, wasn't watching for our reactions.  She admitted she'd only been observing for 5 minutes, but we couldn't argue... since birth, eye contact has rarely been there.  It's so rare, it seems normal to me, at least for Ladybug.  But when Turkey came along, I realized what a difference there was... she and I locked eyes at less than 2 hours old.  And the eye contact is long, and frequent.  I've noticed the difference, and I've tried to dismiss it... Ladybug's older and has grown out of eye contact.  Or come up with some explanation.  But apparently my explanations aren't right... she should be having eye contact, and she's not.  We discussed her social interaction, or rather, lack of social interaction.  And the doctor suggested we have her do a detailed developmental assessment, coordinated through the early intervention network but using the resources of a different region than what we're in.  I thought we'd had quite a few assessments, but apparently this is different.

But, as devastating as just the mention of that word was to me, the doctor left us with hope.  She gave us a task: don't give Ladybug anything she wants until she makes eye contact.  She told us to get in her face, to move with her, until she looks us in the eyes, and then immediately reward that.  She said if we catch this, whatever it is, at age two, we can teach her appropriate social interaction.  If we wait till she's school age, it'll be too late; she'll be set in her ways and we won't be able to change her.

Wednesday, November 13, 2013

Though the Fig Tree Does Not Bud

Call me melodramatic if you wish.  Or just call me an emotional pregnant woman in pain.

The next few days hold a lot in store for my little family.  This pregnancy is proving to be, like the other two, a tad worrisome.  This particular doctor isn't concerned, on the other hand, he isn't the one constantly wondering if the little heart is still beating or if the blood and pain are signaling that there's a problem.  Of course if there is a problem, there's very little that could be done about it anyway, since bed rest isn't exactly an option when you have two toddlers.  So I'll just keep watching and waiting and praying and hoping for the day when I can feel definite jabs and kicks and squirms to let me know things are okay in there.

I head to Billings tomorrow, and Ladybug will be having her sedated ABR on Thursday.  It's going to be ugly.  She can't have anything to eat or drink after midnight, but we have to see the ENT and the audiologist before we can go to the surgery center, and her procedure isn't scheduled until 1230.  That's a long time for a child that is constantly wanting milk and saying "hunry."  And as much as she hates doctors now... I feel sorry for our fellow patients, because I doubt I'm going to be able to control the screaming.

And then Friday she'll see her new cranio doctor.  We'll get that second opinion we've considered several times.

On one hand, I don't want my child to have a hearing problem.  I don't want her to have to have hearing aids.  I don't want her to have surgery.  I don't want her to have to get put under yet again, and have her hair shaved off, and have a big scar, and go through all that pain.

On the other hand, I am tired of wondering why.  I'm tired of the delays, the frustrations, the fluctuations in understanding that she has.  I'm tired of wondering if she's not picking up the Cheerios because she can't understand what I want her to do, or if she's not picking up her Cheerio's because she's being a typical stubborn disobedient toddler. I'm tired of stomping my foot or clapping my hands to get her attention and people looking at me like I'm treating her like a dog.

I fear that we may get no answers.  I fear that we may get answers with solutions that aren't pleasant.  There's no good end to this.  And yes, I know that's the worst possible way of looking at things.  Once again, pregnant emotional hormonal in pain woman here.

I want a simple, pain free fix.  Cheap fix would be good too.  In short, I want a miracle.  I want her to wake up and suddenly be all caught up.  For her head to be just fine, for her muscles to be strong, for her words to be clear, for her to be able to answer a simple question like "Where do you hurt?"

Sunday, in a guided prayer (which was new to me), we were instructed to think of someone in the Bible that God did something for.  And then we were supposed to praise God for His grace towards that person, and for His grace towards us.  Immediately I thought of the many examples of children being healed.  My God is capable of that.

And then the sermon was about how we react to unanswered prayers, prayers that aren't answered the way we want in the timing that we want.  And we went through example after example of people who prayed, and who God didn't answer them with an immediate yes.

This of course left me thinking, how am I going to react as I'm driving back Saturday?  Any news I get is going to be difficult.  And with this pregnancy, what if the pain continues?  What if something happens to this baby?  What if I get some sort of unexpected news at my next appointment, or my next ultrasound?  Will I be able to say, as Habakkuk said,

Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls, 
yet I will rejoice in the Lord,
I will be joyful in God my Savior
The Sovereign Lord is my strength;
He makes my feet like the feet of a deer,
He enables me to tread on the heights.

Thursday, October 17, 2013

Smart?

Someone said my child was smart today.

I was speechless.

I didn't know what to say.  I'm ashamed of what popped into my head.

I've bought into the "tell a kid they're smart and they won't work as hard" mentality.  So I focus on "good try."  Or "I'm proud you're working so hard on this."

But outside our little house... smart is still the word.  I hadn't thought about the lack of it bothering me. Until I stood there, at a loss for words, because someone called my child smart.

A refreshing point of view, and yet, a dagger through my mother's soul.  How do I view my own child?  I can get so bogged down with the problems that I don't see what she can do.  I focus so much on getting her to put two words together that I don't enjoy the way she says the one word unlike anyone else, or I don't appreciate how she signs please so often her sister thinks it's a sure way of getting a bite of what we're eating.

How to balance realism with hope, knowing what needs to be worked on with what can be celebrated?  I haven't figured it out yet.  Some days, I can think of little else.  Others, I convince myself we're normal and everyone else is advanced.  And who defines normal anyway?

Thursday, October 10, 2013

The Question With No Answer

Why?

This is one of those posts in that category of not special needs, but special needs.  Where I talk about how my life as a parent isn't what I thought it'd be.  Where I find myself in offices I didn't think I'd ever be in, discussing problems I never knew existed outside the NICU.

It's more than just "why my kid?"  Definitely far more than "why me?"  It's like asking "why does digestion occur?"  I'm not asking for a great philosophical explanation.  I'm asking for the mechanics, the building blocks of stomach producing acid and the muscles contracting and the cells absorbing.  I guess I'm asking "how" as much as "why."

Because it seems like there's always something.  And while I knew when we received the FGFR2 mutation diagnosis, we could be spending time in offices I'd hoped to avoid, I didn't anticipate the broad range of issues we've encountered. I don't think I could have.  Because it's not like all of these issues are linked to cranio.  If they are, it's not documented in any research article I've ever read, and I've read a bunch.

And of course, I wonder if there's something I did.  Did I not heat the lunch meat long enough?  Was it that hot dog that gave me the stomach ache?  Did I not control my sugars well enough?  Was it the stress of that horrible summer?  Why is this child the way she is?  Why does she have to struggle?  Why does her body just not function the way most bodies function?

I want a simple answer.  I want a diagnosis.  A gene.  Something they can point to and say "this is the cause of all the problems, because they're all linked."  And most importantly, I want them to say "and here is what the future looks like.  Here are the other things that might happen and what we can do to help avoid or treat them."  I want a blueprint.  I want a syllabus.  I want a map.

I don't do well at this fly by the seat of your pants thing.  I like a flight plan.  I like to know what's going to happen, when it's going to happen, and what I need to do to prepare.  I hated surprise outings on weekends as a kid.  "Where are we going?"  "It's a surprise."  "What do I need to wear?"  "Clothes."  "What kind of clothes, outdoors or indoors?  Active or sedentary? Seeing lots of people?  Dirty or clean?  Do I need food?  Should I bring a book?  How long will we be gone?"  "Just get ready."  Argh.  I hated those kind of trips.

Yet, that's exactly the trip I'm on.  I'd like to imagine that the rest of my parenthood will be smooth sailing.  But it won't be.  I'd like to imagine that her muscles will strengthen, her hearing will be fine, her head will not change, her development will go away, and nothing new will come up.  But after the last two years, I know that's about as likely as pigs flying.  And it's frustrating. Because I want to prepare, to study, to ready myself for what's ahead.  But that's not how life is.  It's especially not how life is when your child isn't "normal."  And who defines "normal" anyway?

Monday, August 19, 2013

Trials of almost two

So much I want to write about, so many pictures I want to post, and I'm still restricted to a Kindle.  But, we had internet installed today, much sooner than I'd thought, and we might be making the treck to Billings this weekend to get our stuff, which finally made it the 30 hours.  All in time...

I wanted to record a little of what this move has been like for Ladybug.  She'll be two in about six weeks, and that's a hard time in the best of circumstances.  She's at that age of developing independence, yet still needing so much help.  She's at that age where she knows those blocks stack a certain way, that puzzle piece goes there, but she's just not coordinated enough to get them how they're supposed to go.  She's at the age where she knows what she wants, but can't quite express what exactly she needs us to do. And it's very frustrating to her. And to me as her mommy too.  Many times a day we have conversations that sound like this: "elpa elpa!" "Help with what?" *puzzled look* "elpa elpa, peese?" "What do you need help with?" *stomp feet, scream*

I try to remember that this is normal (right?), and that the screaming and tears are going to be worse than before because everything is different. To add to the madness, I'm also limiting the Wubbanubs to nap and bedtime only, for both girls. Turkey doesn't care, but this is difficult for Ladybug.  I know, though, that we'll be moving homes at least twice more in the next few years, so I can't justify waiting any longer.

We took Ladybug into church with us Sunday, and that's the most subdued I've ever seen her not sick. She just laid her head on her daddy's chest and held her Wubbanub.  It is very different from what she's used to, so I guess she was just coping... makes me wonder what's going through her head.  Really hoping that this is the last time we make such a move and that this truly becomes home.

Tuesday, June 25, 2013

Pitiful


This, folks, is the face of eczema. 

Before the last two years, I thought, how bad can a skin condition like this be?  It's just a rash.  It can't make your life miserable. 

Then I had a child with it.  As a baby, her eyelids bled because of it.  Then it got better.  Now, it's worse again.  And it's worse this time around. 

Not every day is like this.  I presume the really bad days have triggers.  Today, she ate salsa and a pasta salad.  I know one of those made her face and wrists really red, so I'm guessing one of them aggravated the eczema.  Unfortunately, she really liked both of them.  So I either have to figure out what in which one caused it to get so much worse, or I can just not give her either.  Or I can just let her be this miserable every day.

If you have no children, or if your children are tough with no health problems, you can't understand what this is like.  There isn't much worse than knowing your child is hurting and being able to do absolutely nothing about it. 

This was one of those days that I wanted to quit.  She is out of my league.  She's over my pay scale.  She is more than I bargained for when I got pregnant.  I've called on others to help with ideas for treating her eczema and so far have come up short. 

This is motherhood.  It's the getting out of bed the next day knowing you are going to do the same thing you did the day before.  It's having hope, that someday you will be able to help your child.  Or if you can't, someone else will.  It's the hope that your child won't hurt forever, won't struggle forever. 

It's coming to the end of yourself and realizing that you have no idea what you're doing, yet you have no choice but to get up tomorrow and do whatever it is you do again.  It's realizing you can't fix it.  You can kiss the hurt, but it won't always go away.  You can tell them they're doing a great job, even when you know the rest of the world would say it's lousy.  You can tell them they're beautiful even when you know the rest of the world will disagree.  You tell them they are wonderful and special when the rest of the world will tell them to blend in and just be one of the crowd. 

But in the end, only three things remain.  Faith, that there is eternal meaning in the laundry and lotions and bedtime stories.  Hope, that God will care for your child even when you can't.  And love. 

Tuesday, June 11, 2013

Give them Jesus

While working with Ladybug on stacking blocks, I had my Indelible Grace station playing on Pandora.  Fernando Ortega's version of "Give Me Jesus" started playing and while it may seem a leap, my thought process made sense in my own head.  I never hear this song anymore without thinking of a sweet baby girl whom I never had the opportunity to meet, who blessed my children by giving their mama an eternal perspective. 

Give my child Jesus.  You can have all this world.  You can have all the developmental milestones.  You can have the 4.0 GPAs.  You can have the honor roll.  You can have the high school letter jackets.  But give my child Jesus.  Give my Ladybug Jesus.  Give my little Turkey Jesus.

In her morning, give her Jesus.  As she toddles, splashes, and babbles, give her Jesus.  As I kiss her goodnight and tell her that Jesus loves her most of all, give her His love.  

When she's alone, give her Jesus.  When she goes through those years of feeling like no one understands her, give her Jesus.  When she doesn't understand herself, give her Jesus.  

When she comes to die, give her Jesus.  

As I gazed at my little Turkey as she fell asleep on the couch, the same thoughts came to mind.  She hates being alone.  She wants to feel me.  When I put her in the crib, she held my hand with both of hers.  

When she's alone, give her Jesus.  When it's dark and she can't feel anyone near her, give her Jesus. 

Monday, June 10, 2013

Busy Day!

 Score one for mommy.  Many moms are familiar with Sophie the Giraffe.  The crazy over-priced but supposedly awesome teether.  I have rarely seen it less than $20.  I took a couple hours alone this weekend to do some shopping, and found this little gem for, brand new, $2.  Yes, $2.  No zeros.  Sundry Store is awesome!! 
 Look what we did today!  Ladybug can stack blocks!  We have been working on this skill off and on for several months, ever since the "charts" said she should be able to stack.  After finding some mismatched bowls stacked in the middle of the kitchen, I decided it was time to pull the blocks out again.  Sure enough, a couple demonstrations and she took off!
 Going for three!
 And she did it!  Three blocks!  Until you are a mom, especially of a child who has to work a little harder than some, you have no idea how incredible this is.




I don't know what it is about me and this house and dogs, but they seem to be attracted to me.  This little fellow dashed through my yard and about got run over on one of the many trips he made across the street.  So the neighbors and I chatted for the first time, about what to do with the little fellow, and I ended up taking him inside.  Then I plopped him in the basket of my double stroller and the kids and I walked in ever widening circles till he jumped out and acted like he knew where he was going.  When I heard a bunch of yappy dogs going nuts, I'm guessing he found his brothers and sisters.






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Sunday, January 13, 2013

Milestones

I'd like to post more regularly this year; of course I say that almost every year so we'll see if things are different this time. =)

As a mom, I focus a lot on milestones.  Rolling over, walking, using a sippie cup...  I spend time on babycenter.com, and a frequent topic is what our little ones are able to do.  Frequently, I've felt like I'm reading on the forum for children several months older than Ladybug.

One of the things I'd like to change about myself in the coming year is how I think about my children.  I think of Ladybug as being behind; I describe her as slow and delayed.  And while that is technically true, I want to guard myself against letting that define who she is.  As my pediatrician put it, "She's just Ladybug."  She is where she is, developmentally.  And it's okay.  It doesn't make me a failure as a parent.  It doesn't mean she's dumb.  She just is.

It's so easy to focus on what she can't do.  But this year, I'd like to focus more on what she can do.  Today, for the first time ever, she stood up in the middle of the floor by herself.  Instead of paying so much attention to what other children her age are doing, I'd like to simply enjoy what she's able to do right now, and work with her on the next step.

She'll be going to a Bible study with  me and Turkey this week for the first time, and she'll be in a class of her own.  I'm excited for her; I think it'll be good for her to be around other adults and children, who'll teach her Bible stories and songs.  I've been trying to decide whether or not I need to talk to the children's leader about her developmental status.  I think I'll simply let them decide which class she's best suited for, and let them know that if they need to move her out of her age group it's okay with me.