Sunday, November 20, 2016

Holding Space

I've only recently become familiar with the term "holding space."  As I've gathered, to hold space for someone is to be with them and support them in a way that allows them to be wherever they are in life, without trying to fix them,judge them, or otherwise interject ourselves into their pain.

Biblically speaking, I think we could say that this would fall under the realm of "mourn with those who mourn" (Romans 12:15).  It is relatively easy to rejoice with others, but most of us likely need to work on mourning with others.  Coming into another's pain is a difficult thing to do.

Pip's first day with a feeding tube at 9 months old.

The past couple of years, this time of year, I'm again struck with an overwhelming feeling of isolation.  This year a couple of other things have compounded that.  However, overall, we come to about November, and cold and flu season hits.  We can have been sailing merrily along through late spring , summer, and early fall making terrific progress with feeding, occupational, and physical therapy, only to have everything come to an utter stop in November.





Starting in November we struggle to simply maintain at our house.  Every virus that comes in is a potential battle to keep Pip out of the hospital.  It often means weeks without going to church.  We see all of that work, particularly with feeding, regress.  I start to wonder if I'm being overly optimistic about his future when I envision him without a feeding tube, and if I should resign myself to the reality of him having it forever, which we're told is the most likely possibility.

And, this time of year, more than any other, we get more "words of wisdom."  Because I don't know what it's like from any other vantage point, I don't know those realities.  However, I can't help but wonder if things would be any different if we had a diagnosis that was better understood.  That wasn't still so heavily in the research phase--if we weren't waiting for a cure, or even a treatment with solid promise of slowing the progress of mito.  If people could knowingly say "ah, an extra chromosome.  Not your fault."  Or "there's nothing you could have done to prevent that cord around the neck."  However, in our world, the one I know, outcomes are unsure and the condition is poorly understand by most.  We hear "you can't trust the doctors" when we've been told the condition might be degenerative.  This is meant to be hopeful, but when you're trying to wrap your mind around this possibility, it feels dismissive.  Or "this must be the result of a vaccine injury," especially since we also have two children on the autism spectrum.  What do we hear?  "Too bad you weren't as smart as we were."  

I've actually heard people tell those with autistic children "we were planning on vaccinating, but then we educated ourselves."  I'd like to make one thing very, very clear here.  There are more than likely many causes of autism, but regardless of that fact, not one of our children is a "bad result."  That may not be how it's intended, but that's certainly the way it sounds.  Also, don't assume others haven't done their research or prayed about their decisions, either.  It is possible for educated, thinking, Bible believing, Jesus following adults to come to different conclusions, and we must, must be able to walk with one another in love and not assume that another's suffering isn't our own because we knew better. 

We've had the pink drink, essential oils, fermented vegetables, and any number of diets suggested.  
Pip taking his first steps with the help of AFOs and a walker.  Such a happy day, and oh, how far he's come!



When you have children with medical complications--particularly ones that are potentially degenerative, believe me, parents are capable of stunning amounts of research.  If we haven't actually tried it, we've read extensively enough to know why we haven't. In many of our cases, prayer has been coupled with that reading. 

Mitochondrial disease, like many other conditions, is complex.  There are no easy answers.  And it really boils down to this--only God knows why.  So what do we, and so many others walking similar journeys need?  We need a friend.  Someone who can understand why we're not scheduling a million play dates--or even one or two, though we desperately want to.  Someone we can call.  Someone to "hold space" for us.  Those days when Pip hasn't eaten anything orally...again?  Someone I can talk to who won't say "don't be discouraged."  Because really?  It's discouraging.  It is.  I know that there's always tomorrow, or next week.  But he's almost three, and I want to leave the house with a regular snack and not a medical arsenal, and plan a play date, and be seen. Be known.

I think that's what most of us really want, ultimately.  To simply be seen.  Through the managing all of the stuff so well, because we have to, because you would to if your child's life depended on it.  

I like to think, I truly believe, that if Jesus walked into my home, and any other with children like mine, that, apart from healing these precious ones, he would weep with us, as he did with Mary over Lazarus.  He would know this is hard, and not ask us to pretend otherwise.  He would see us, and know us.  To be known and loved.  That, in itself, is a balm to the soul, and a kind of healing that no other offered remedy can come close to touching.
This was over a year ago now, and no, we don't always look this put together.

Friday, April 29, 2016

Hospital Ups and Downs

Over spring break Pip went down with strep throat.  Because of his probable mitochondrial disease he had extreme feeding intolerance and became dehydrated, hypoglycemic, and had wacky electrolytes.  He earned himself three full days in the hospital.




That episode really threw us for a loop.  After all, this was strep throat.  It's miserable, but it's a common childhood illness that's very treatable.  I asked both the doctor and nurses how often they get kids in the hospital with it.  I kept hearing "almost never."  When Pip is healthy we can almost forget he has anything going on.  Almost.  The feeding tube and leg braces make it a bit hard, but you get the idea.  He does really well.  This brought all sorts of fears racing through my Mommy mind.  Most of all, it made the fact that there is, in fact, something going on with his little body very real.

A few weeks after that we loaded up the car and trekked to Seattle to see Pip's mito specialist and have a repeat MRI and muscle biopsy done.  I asked if what we experienced with strep throat is something that may simply be an issue for Pip with "typical" childhood illnesses, and he said that yes, it might be.  Not what we wanted to hear, but something we need to be prepared for. 



We had a day to spend at the Pacific Science Center before our appointments and tests, which was so much fun!


We had a full day of appointments and learned that Seattle Children's has an anesthesiologist who specializes in mitochondrial diseases.  Pip's been under a few times, and he's never woken up so well.

Resting between appointments

Riding around between appointments at Seattle Childrens

Waiting to be called back for his MRI and muscle biopsy


In good news, Pip's MRI appears to be normal this time around!  If you'll recall, last year his brain MRI showed white matter damage of unkown molecular origin.  Basically, they were checking to see whether what was going on was degenerative.  But his brain actually myelinated!  We're so, so thankful!  Apparently this can happen with mitochondrial diseases.  His MRS also showed a tiny lactate spike.  We're still waiting to hear what, exactly, that means.  We have to wait another few weeks to hear about the muscle biopsy.

So, much uncertainty yet, but also much to be thankful for.




Friday, March 11, 2016

When the Waves Keep Coming

The waves keep rolling over me in crashing torrents.  I shake, I cry, I feel panic wash through me in ways that are new and frightening.  This life, this unexpected life that we've been given has given us opportunities to trust God in ways we never imagined--because we've hit places in which only God can reach us like never before, too.

Last week I was out with the boys, and we had an event that proved to be my emotional undoing.  We were, once again, at the local thrift store to search out free books between school and therapy.  The boys rushed to the toy and book section.  This is also always feeding time for Pip.  After assuring him that he would get to look at books, too, in just a minute, I lifted his shirt to connect his tube to his pump.  However, upon lifting his shirt, what I saw instead of his button, was simply a puckered hole in his abdomen where his button should have been.  Feelings of panic filled me so quickly that instinct took over.



These two pictures show what I should have seen upon lifting Pip's shirt--both without (above), and with (below) the dressing.


You see, it typically takes less than an hour for a G tube stoma to close enough to require going back into surgery to replace it.  We've had the tube fall out once before.  That time, when it was noticed we happened to be at the hospital.  It took the GI many, many minutes of sweat and uncertainty to get his tube back in.  Pip screamed and screamed in pain while I held his writhing little body down and cried and whispered what comfort I could in his ear.  When the tube finally went back in the doctor let out a huge sigh and said "wow.  That was close."  It isn't something you forget.

So, when I lifted Pip's shirt, and rather than seeing his button, I saw this, I panicked.



It had been two hours since I'd last fed him, and I had no idea when in those last two hours it had come out.  For all I knew, it was already too late.  So there, in the middle of the thrift store, I said "Oh God, no.  Boys!  We have to go to the hospital. Now!"

And even though they were in front of a display of toys and books they're allowed to play with, the boys moved--fast.

Once we got to the car I realized that I had two emergency kits--one in the diaper bag and one in the car.  I emptied both, saying "please, God, help!" all the while.  During this time one of the boys asked me why I was saying that.  I said something to the effect of "this is what praying sounds like when you really, really need God to help you!"

I found the Foley catheter, the one that the doctor tells you he hopes you'll never need, some lubricant, tore both open, lubed it up, kept crying (literally) to God, and it went in!  His stoma was open!


At that point what was in his stomach started pouring out the foley catheter all over the seat of the van and my clothes.  I found a diaper that was in the emergency kit and wrapped it around the end of the catheter to at least soak up the flow.  Then I picked up my phone, called Ryan at work, and cried.   He said he would leave work and meet me at home.  



The aftermath of having replaced Pip's tube on the living room floor.

Once home I was able to replace his button with a new one, and physically, all was well.

Emotionally, however, is a whole different story, and one I'm still sorting out.  Things have been stacking up for awhile.  I've been trying to get developmental disability services set up for both Abel and Pip.  This is the sort of process that makes you realize that getting support services is more theory than reality in many, many ways.  The red tape, bureaucracy, classes to be taken, and stacks and stacks of paperwork to complete are unreal.  And I broke after this incident.  I became a jittery, crying, shaking, illogical mess.

What is hardest for me to process is the fact that my faith is not gone.  It is very much here, and it is real.  God is here, and HE is real.  However, I always imagined, reading others' stories, that knowing His presence would feel somehow--I don't know, empowering, maybe?  But I am broken.  I'm so far beyond a place in which I can handle this.  The same week in which this happened, Mercy was home from school one day with her Cyclic Vomiting Syndrome, and in our bed all night with it another.  And Abel is clever and witty and hilarious, but autism is also exhausting.  And these things don't rest.  Mercy can't just stop feeling like throwing up, and Abel can't control his neurological function any more than Pip can make his white matter regenerate.



We live in a fallen world.  And I am fallen, and falling.

There's beauty in the fact that our children get to see moments in which we are literally, literally, crying out to God, and then they see him answer.  That is not lost on us.  But just because beauty rises from ashes doesn't mean that the ashes aren't there with the accompanying burns and scars, or that when the waves come we don't inhale some water, enough water to cause some damage, before the storm subsides and the sunset paints glorious color on the horizon.


Wednesday, February 24, 2016

This Special Needs Mom's Daily Schedule

I've toyed with the idea of sharing what a day looks like at our house, and decided to just go for it.  This was Monday, and while this particular Monday had an extra appointment thrown in at the end, that isn't atypical.  There are the regular, recurring appointments, and then the frequent specialist visits we deal with.

5:30am: Ryan wakes up.  On Monday mornings he works from home from in the mornings because Pip goes to a therapeutic preschool program, where he gets PT, OT, and Speech/Feeding in a three hour drop off program.

6:30am: I wake up, forego a shower, and prep everything for the day as quickly as I can. This means packing lunches for 3 kids, making sure we have water, formula, diapers, extra tube supplies in case of an emergency, etc. ready for the day.  I also pack Pip's little backpack, which he takes with him, with a bottle, applesauce, and extra outfit, water, and anything else they want with him that week.  




7:30am: The kids all wake up.  Mercy (7) dresses herself, Gilead (6) needs several reminders, but gets it done in the end.  Abel (4), who is on the spectrum, needs maximal direction and still can't fasten pants or get his compression shirt on himself.  Once Pip is up we disconnect him from his feeding pump and tubes, change him, change the dressing at his tube site, and administer his meds.  Now that he's awake and I have access to his pump I prep it for his morning therapists.  This involves opening a new feeding back, loading it into his little backpack, priming formula through his pump, and making sure all of the settings are correct.  The process takes about 10 minutes.  In the meantime, Ryan puts Pip's car seat in his commuter car.




8:00am:  I leave to take Pip to his therapeutic preschool program.  Ryan is left to feed the other three, comb their hair, etc. and get them to school by 9:15.  This is not as easy as it sounds when you have a child on the spectrum who requires full guidance to get these things done.

9:15am: Ryan and I meet in the school parking lot to switch cars.  I go home for an hour and a half and madly do as many dishes and as much laundry as I can in an hour and a half.


Pip plays at the table during a feeding while I do dishes on a morning he doesn't have therapeutic preschool.


11:20am:  I pick Pip up from therapy/preschool and get updates from his speech/feeding, occupational, and physical therapists.  Then we head to Abel's preschool to pick him up at 12:00pm.  Next we get Gilead at 12:15pm.  The boys eat a packed lunch in the car on the way to therapy.

1:00pm:  Gilead and Abel have therapies until 2:30pm.




3:30pm: Mercy has a GI appointment to keep up on her trouble with neurogenic dysmotility, which we're told is likely a result of a mitochondrial disease.  I mention that she's also had several bouts of the "stomach flu" recently that have increased in intensity, but nobody else has caught.  An hour later we leave with a diagnosis of Cyclic Vomiting Syndrome and three new prescriptions.




5:30pm:  We get home.  I haven't been on top of things enough to have a month's worth of freezer meals or whatever stashed away in a long time, so I frantically try to think of what to feed my starving family.  I start in on a from-scratch stir fry.  It's both economically difficult and nutritionally difficult to eat pre-fab meals when you have food allergies in the house.  In the midst of preparing dinner Pip is due for a feed, so he needs a bottle, and then it needs to be poured into his pump and he needs to be set up with that.

6:30pm:  Ryan works on getting the kids ready for bed.  I work on yet more paperwork until I start reading to them at 8pm.  Most of the time Ryan does the reading while I switch to laundry or dishes and have a bit of "alone time."  By now, since it's the end of the day and everybody's tired, we're usually into meltdown time, too.  Those of you with children on the spectrum know that the meltdowns we're talking about aren't typical preschool meltdowns.  By the time the kids are in bed, we're sucked dry.

8:30pm:  The kids are in bed.  I do more paperwork.  Ryan works on dishes.  At 9pm we call it quits so that we can actually see one another a little bit before we go to bed.  Tomorrow we'll wake up and have a very similar day.  And we'll start it with dishes in the sink, laundry on the couch, and stuff on the table, because we quit at 9pm the night before, if all goes smoothly.  

This week our Saturday morning will consist of taking Mercy in to have fasting labs drawn to check for metabolic problems.  Seattle wants them before seeing her, and GI here wants them before starting her on preventative meds for cyclic vomiting syndrome.

The first week of every month we get our medical supply shipment.  Roughly a dozen boxes filled with formula, syringes, feeding bags, venting bags, extensions, etc.  It takes approximately 3 hours to properly put it all away.  Sometimes 4 by the time we break down the boxes.

This week alone we will have had GI, PT, OT, Speech, Feeding, and Developmental Disability appointments. Plus lots of phone calls.  I often get phone calls during other phone calls.  And I have three stacks of paperwork pending.

I lived life before special needs, and it was different.  Even when we were "busy," the pace was much, much slower.  As the parent of children with developmental and medical needs, there's a constant tension between meeting their needs and maximizing their potential and not going completely crazy.  I don't think I'm there yet...


On Looking Good

I sit down with yet another stack of paperwork, and a tear slips down my cheek.  I've already been to three appointments with my children today, one of which brought yet another diagnosis, and I just don't feel like I can do it anymore.

But we don't look like we're falling apart.  In fact, I hear at every turn that we look so good.  And I am thankful.  I shudder to think how overwhelming this would all be if Pip weren't at a baseline.   However, I'm apparently good at unintentionally looking more together than I actually am, which makes answering questions like "how are you?" feel like a huge dilemma.

When I'm asked how I am, there are two options before me.  I can go with "fine," like the majority of good Americans, and people can take from that what they will, or I can answer honestly with "tired," "overwhelmed," "scared," or whatever is most appropriate at the time.  Then I get to watch the listener wrestle with the obvious contradiction between how I look and what I just said. 

Life as a special needs mom is a unique kind of exhausting.  I read once that it isn't as easy as we make it look, and that sounds so....conceited.  However, I really believe it's true.  There's a lot that happens behind the scenes that nobody sees.  And quite frankly, when we aren't looking "good," we're so far beyond good we aren't out--unless we're at the hospital or some such.

We've adapted to tired, and overwhelmed, and just plain so exhausted we can't see past our tears.  I try to remember that all of the best intentions are being laid forth when I'm told I look "good."  That it doesn't invalidate anything that I'm feeling.  But I wonder if I'm this exhausted and feel like I'm accomplishing nothing, when will I ever do anything that matters?  I see other special needs moms being support brokers for other special needs families.  They're working a job.  Or getting another degree.  Or volunteering for church ministries.

I'm not doing any of that.  I'm surviving.  On minute, one hour, one day at a time.  From where I sit, this doesn't feel good.  It feels like failure.

Wednesday, November 25, 2015

A Long Diagnostic Road

As many families of children with complex medical issues can tell you, the road to diagnosis and treatment is often long and exhausting.  It's looking like ours will be no different.

We just returned from our second trip to see a neurologist who specializes in mitochondrial disorders at Seattle Children's Hospital.  The first trip the appointment was for Pip, and I flew with him.  This appointment was for Gilead, since he constantly complains of muscle pain and fatigue and disautonomic issues.  




This time we went as a family, which was quite the adventure.  Lots and lots of car time over four days with four young children.  The doctor is highly suspicious that Gilead and Pip both have a nuclear form of mitochondrial disease, meaning that they inherited a faulty gene from both Ryan and I.  Apparently there's a one in four chance of your children getting it if both parents carry a faulty gene.  However, given Abel's autism and Mercy's neurogenic dysmotility, motor delays, and motor ticks, we may have "won the jackpot" and have passed the genes on to all four of them.

Because Pip is the most involved, given his severe GI issues, his motor delays, the *leukoencephalopathy on his brain, and other quirks, the next step is to repeat the MRI of his brain and perform a muscle biopsy on him.  A repeat MRI will show us whether the leukoencephalopathy is progressing, and a muscle biopsy will hopefully show us whether there are damaged mitochondria and help identify DNA.  There are three drugs in the pipeline for mitochondrial diseases, but they're targeting them to specific DNA, which is why it's important to try to nail those down.

The MRI and muscle biopsy will be done in Seattle, which means another tip.  A longer one.  We'll meet with the anesthesia and surgery team on one day, and then he'll have the MRI and surgery the next.  Then we need to remain in the area for at least one day following the biopsy just to be sure there aren't any complications.  Mito kids are more prone to those.  I'm not sure how we're going to manage this.  Taking all of the kids would be hard, but I want Ryan with me.  However, childcare may be downright impossible if he did come.  We're just breathing and trying to trust God one day at a time.

Some of you may recall that since someone hit me on the interstate last year I've had a phobia of interstates since.  After successfully completing the trip to Seattle I was finally relaxing.  Then, about halfway home, we were hit on the interstate.  Again.  You can't make this stuff up.  It was incredibly ironic.  We were passing a vehicle that had spun into the median (a big, grassy one), and police were already there.  Traffic was slowing.  A lot.  Then the car in front of us suddenly pulled over.  We managed to stop on time, but the guy behind us didn't, and rear ended us.  





As it turns out, the car in front of us that pulled over was the news crew, pulling over to get footage of the accident--and in doing so caused another one.  Thankfully, we'd slowed enough everyone was okay.  We now need to replace all of our children's carseats and go through the hassle of a claim, but we're thankful God had his hand on us.

So, now we need to figure out when will be best to return to Seattle for more extensive testing, and this mommy needs to rest in God and not panic about logistics and potentials. 


*Leukencephalopathy means that Pip has white matter damage to his brain, that appears to be a leukodystrophy-like disease of an unknown molecular origin.

Leaving the CREC, Part 3

We said we'd explore why we thought the CREC had so many issues with abuse.  However, we've come to realize that we just aren't qualified to really, fully analyze that.  We do believe we have some pretty solid ideas, but we also aren't prepared for the kind of backlash that posting those could potentially bring.  Especially in light of the fact that there are many, many people in the CREC who we truly love.

Therefore, at this point, we are happy to be listening ears for those who need someone to talk to regarding their CREC experiences.  We know the pain is real.  We've experienced it.  We're also thankful to be in a place of hope and healing now.  We're thankful that God has delivered us into a church community that is full of grace and compassion and gospel love.  We'd love nothing more than the ability to extend that love to others who need it.

So here we stand.  We've been broken by our experiences, and forever changed.  We aren't fully healed yet.  Some things send me into almost PTSD type states.  However, slowly but surely we are being shown that Christ's love doesn't look the way we thought it did.  It is glorious, and we are made new in that revelation.