A Long Overdue Update

Hello, dear friends. I have done a poor job of keeping up with this blog, and while I know we have a pretty darn good list of excuses...

[Moving to a different state]
[Living in transition while waiting for household goods]
[Working to unpack and settle into our new home]
[Dealing with a severe back issue]
[Going to the chiropractor twice a week]
[Rarely actually sleeping]

...the fact is, I really do want to share more details about how Verity is doing since so many prayer warriors care about her [and our family], bless them!!

Picture for cuteness...

In the interest of time, here is a quick rundown of Life with Verity since we drove away from Iowa on July 14, 2017.

• Verity has not seen ANY doctors since we arrived. This is not really by our choice; it's a long story, but "mistakes were made" and we are having to jump through hoops with our military health care in order to get her to her new Primary Care Manager so that we can then start getting her specialty referrals.
• Thankfully, we have not necessarily NEEDED to see a doctor (i.e. no illnesses); however, there are some concerns we want addressed ASAP.
• Probably the biggest issue is that things have drastically changed with her feedings. Whereas she was doing fairly well with oral feeding attempts and seemed as if she would soon make gains, she has instead regressed completely. We have almost given up even trying...except we are determined not to totally give up on the idea of her orally feeding some day. Tongue thrusting, fussing, spitting, spewing, gulping and coughing are some of the ways we can clearly tell that she has not wanted to suck from a bottle. (And yes, I did attempt nursing her a few times, but that resulted in a scream fest each time, and let's be honest...I don't have the energy to do this. I'm done. I'm pumping every 3 to 3.5 hours during the day, so she continues to get breast milk only, but that's it. I'm done attempting to nurse her. Perhaps if she were my only child, it would be different.)
• Besides the rejection of bottle feeds, we ended up dropping the volume of her feeds because Verity started having terrible reflux, as in projectile vomiting through the nose and mouth what seemed to be the entire feed amount. We had worked her up to 75ml but then backed off once the reflux began, even going as low as 60ml. She is back up to about 70 now, though we are keeping the 8pm feeding at 60-65 since 8:30pm seems to be the Vomiting Hour. She is still on a continuous feed at night that goes over 10 hours. The total volume kind of depends on how much I've pumped that day but can be anywhere from 200-240ml total, so 20-24ml/hour.
• Verity's hernia at her belly button seems to balloon out uncomfortably. The surgeon we met with on July 13 (who was doing a follow-up to the g-button surgery, during which he also repaired this hernia), said that sometimes this happens and it usually resolves itself. I don't know anything about this issue, but it looks uncomfortable to me, and I would like some input as to whether it could be hurting her at all.
• We have passed the 12-week mark for Verity to wear her boots and bar 23 hours a day. Technically we are supposed to keep her in them constantly until we get the OK from an orthopedic doctor that we can go to naps and nighttime. But--shhhhh--we are often letting her be barefoot and fancy free while she's awake anyway. Those little feet look pretty good to me, and besides, it helps her be more content. Which leads to the last major bullet point...
• Since arriving in Colorado (a rough estimate), and particularly this week, Verity has seemed to get progressively more miserable. At first we wondered if it were due to the altitude change. Now we just don't know. Perhaps it's altitude; perhaps it's a combination of some of these other factors. Maybe the pressure change is causing pain with her little tiny ear canals. Whatever the cause(s), in general, Verity is not a happy baby. She's a far cry from the contented cherubs we've raised before, babies who got into a good routine early on and loved life. And because she's so unhappy, she doesn't sleep. Oh, she naps here and there, but it's not a deep, restful sleep. And therefore her parents don't sleep. 

I won't take time to outline all the things we've done to help Verity (and us) rest better. Suffice it to say we have probably tried everything, though I'm sure there are other options we could pursue. The point here is that this has been a consistent problem for months, and while it could very well be as simple as "it's a Trisomy 18 thing," my concern is that there is something causing her distress, and I want answers. It is an awful, awful feeling to listen to your baby scream and not know how to help her. Every day is different, every night is different--what works one time won't work the next. 

This week has been particularly brutal for some reason. Whereas often Verity will sleep for 2-3 hours before starting her "night time fussies," this week she has not had any stretch longer than about 40 minutes during the night, with every 5-20 minutes being the average "sleep" interval.

I realize I wrote above that Verity hasn't seen any doctors--however, I did take her to my chiropractor on Monday. She did a wonderful session on Verity, addressing her hernia, her esophagus and midline, and some neck and cranial work. I was so hopeful that it would result in some better sleep! Alas, starting that night things were worse! Dr. Molly encouraged me to bring Verity with me every time I have an appointment so that we can continue to work on her. I am grateful for a caring staff in the Thrive Health Systems who are helping not only me but also our kids. 

So, that's where we are at. Once we get into the system at our new military treatment facility, I have a host of appointments/tests I plan to ask for, including: 

• GI--let's see why reflux is all of a sudden an issue
• Ortho--can we graduate from boots and bar 23/7 to naps and night?
• Cardio--we need a baseline echo so we can keep an eye on her heart
• Swallow study #2--this was recommended to us before we moved and will hopefully give us some clues regarding the oral feeding issues
• Sleep study--now that she's older, I'd like to see if she is dealing with any kind of apnea. (The NICU staff assured us that it wasn't an issue while they were observing her back in March.)

Any Trisomy mamas who happen to be reading this...would you add anything to this list? 

Thank you for reading this far. And thank you for praying us all along this journey. It's definitely a stressful season for our family. Now that we are a little more settled, I will try to put some of my current thoughts and feelings into words on this blog...meanwhile, here are a few more of my friend Melissa Pennington's beautiful photos of our Verity. Stay tuned for more in future posts! :-)

Milestones

The last week has been insane with pack out activities: getting ready for yet another military relocation now that Ted's two-year command tour is officially over. I'm in my house...alone...and I don't have to be anywhere for an hour and a half, so it's the perfect time to sit, breathe, and reflect a bit. You're welcome to join me for awhile. :-)

Twenty years ago, on June 28, 1997, I became the luckiest girl on earth. That's the day I married my Ted, the day I stepped blithely into the role of Air Force wife, the day that would seal my fate as an eventual mother of nine...NINE?!?!...children. (Oh, if you asked us back then, we would have told you that we planned to have two, MAYBE three children. If you don't know our story, maybe someday we can have a long visit over a good cup of coffee!)

I had no idea what I was getting into. This military life is not for the fainthearted. If I had known some of the difficulties we would face, would I still have said "I do"?

Absolutely. And I would do it all over again. One thing I've learned...each challenge that we have muddled through has only made us stronger as individuals AND as a couple. That's not a credit to us, because we are two incredibly sinful, weak people. Our journey with Verity has revealed ugliness that is all too easily hidden in relatively "easy" times.

But we have received grace upon grace, praise Jesus!

And so here we are, celebrating our 20th anniversary, which coincided with the same date as the Change of Command ceremony, at which my husband relinquished command of the Best D*** [insert kind of squadron here] Squadron on June 28, 2017. It was a wild and wonderful ride, an incredible opportunity for Ted, and though there were sticky situations and a number of sobering events, we are thankful that overall, this was a really great assignment. And I think it's completely kosher (not to mention unbiased!) for me to say that morale and production soared under my husband's leadership.

Here he is, my amazing husband. He gifted me a beautiful pendant during the Change of Command ceremony in honor of it also being our 20th anniversary. Shown below is the cross necklace with ruby in the center: Ted's gift to me on our wedding day was a specially made cross with a ruby from my
grandmother's engagement ring at the center. We used that engagement ring, but Ted replaced
the middle ruby with a diamond. That necklace was sadly stolen from our house when we lived
in Italy, so Ted decided to build upon his original design! This one has the birthstones of our children surrounding the ruby.

After the ceremony, we celebrated with friends and family at a park, and then he and I escaped for a much-needed overnight alone, the first since our anniversary in 2014.

What a lot to celebrate! An ever-deepening marriage relationship and a successful completion of a command tour that also completes 20 years of active duty service.

But wait...there's more!

In our family, the 28th of any month is now a reason to celebrate! And on June 28, our little Verity turned four months old! All of these milestones made her pretty sleepy...I didn't get any photos of her with her eyes open that week, it seems! We had out-of-town guests, some dear friends from our previous duty station, who visited us and got to attend the Change of Command and did a lot to help us prepare for our moving week(s). One of their daughters, Sasha, brought a whole bag of handmade goodies for Verity, which you can see in the photo below. This little girl! So loved and prayed for! Sasha and her siblings (and parents!) have joined the ranks of those who have been blessed by our little Verity in person.

As I close this post and prepare for a homeschool moms' night out, I can't help but tie these two precious people together: my husband and Verity. I remember when our oldest was born (October 18, 2000) and watching Ted in the hours and days following our daughter Charis's birth. He was so gentle and caring, so perfectly natural in this new role of Daddy. I remember feeling incredibly grateful upon learning that this was another dimension of my husband that I would get to see and love, a role that I had no way of (truly) knowing about ahead of time. I mean, you can assume and hope that your chosen life partner will be a good parent when the time comes, but you can't REALLY know until it actually happens.

I've seen heartache and desperation exuding from Trisomy parents who are all alone in this journey. Whether it's a spouse/significant other who walks away during the pregnancy, saying in effect, "I didn't sign up for this," or whether it's an emotionally distant partner who refuses to be involved in the all-consuming care a special needs child requires...my heart goes out to the brave warriors who soldier on, choosing life for their babies and doing what it takes to give them love and care despite the immense burdens they bear alone.

I can't even imagine doing life without Ted, let alone life with our special needs girl. From caring for the g-tube site to being able to prime and start a feeding tube in his sleep, from gently strapping boots onto her kicking little feet to bathing and bottle feeding, Ted is as much of a part of Verity's care as I am. He talks to her, sings to her, dances with her (or makes her dance!), and loves her just as much as he loves each of our 8 other children. He's exhausted most of the time because he is probably awake with Verity at night more than I am (mostly because I wear ear plugs because of his snoring, lol), but he just keeps on...keeps loving all of his crazy, chaotic family, loving us even at our lowest and calmly encouraging us forward.

Ted, thank you for your willingness to command the craziest squadron of all: your family! Thank you for being such a loving, faithful, committed, and involved husband and father. I love you more than I could ever say.

A Glimpse into a...Normal...?!...Morning

I have so many unwritten posts I'd love to share on this blog, if for no other reason than to sort through my own often contradictory thoughts and feelings. There seems to be continuous material of the regular updating sort, news from appointments and so on, and since I so rarely have both of my hands free (not to mention my lap) at the same time, I don't really have the chance to sit down and type the way I did during my pregnancy. Not only does Verity demand my hands and lap, but now that she is very much present in our lives, our other younger ones seem to be even more needy, somehow paranoid that Mom is going to leave again, and so they vie for my hands, lap, and attention more than ever.

Anyway. I posted the following as my Facebook status earlier this morning, and I thought it was worth copying and sharing here for those who don't use Facebook or who missed the update (how is it that we sometimes feel more unconnected than ever despite all the social media outlets?!).

**********

A glimpse into my morning, as I fumble around following a night of being awakened 1-2 times every hour...I hope it can bring some smiles and encouragement to you, even if only by thinking "Thank goodness I'm not in her shoes," LOL!

7:45--begin prepping Verity's 8am feeding by changing out the feeding pump bag and warming her milk. Quiet kitchen aside from...some...odd noises?? Ice maker?? Huh.

7:55--start the dishwasher and prepare to bottle feed Verity along with her pump feeding

7:56--shriek in terror as an unexpected flash of fur skitters across the kitchen floor. MOUSE! This explains those noises; the dishwasher must have "flushed" it out of its hiding spot.

7:57--somewhat frantic search for the beast, although I have no idea what to do with it if I were to find it; I'd almost prefer to let it disappear...I'm sure the neighborhood cats that poop in our yard can take care of it as soon as it finds its way outside...

8:00--return to Verity, start her pump feeding, pick her up to hold her and bottle feed her.

8:10--we have not made much progress with bottle feeding, but Verity is very much wide awake and not unhappy, so I'm enjoying this time with her on my lap.

8:15--Verity unconcernedly relieves her bowels. Ummmmm. I really do not like what I am feeling on my BARE LEGS!!!! At least she was lying across my bare legs instead of my shorts?! Uuuuuuggggggggghhhhhhh. Holler for help finding and bringing baby wipes.

8:20 and following--we have finally located wipes and I am cleaning my legs and preparing to clean Verity. This is a ridiculously long process as we try to extricate her from her poopy night dress and keep the feeding pump away from the poo. Adding to the chaos: the feeding pump starts chirping that it's out of food, because I haven't had a chance to pour from the bottle the remainder of milk that Verity didn't take during the bottle feeding portion of our time together. This means there is now air in the line and I need to disconnect from her g-tube, prime the tubing, and restart the pump. Easy enough, but it takes time and I am working with a wiggly, poopy baby and her poopy mess of a diaper, dress, changing pad, etc.

Meanwhile...upstairs...Rhema is waiting in her crib (I usually try to get her ready for the day and in her high chair before the 8am feeding, but we got sidetracked today). Bless her heart. She waits patiently today (not always the case) until I can get up there with Verity, who obviously needs a change of clothes. Verity gets a new outfit and lies contentedly on her tummy while I retrieve Rhema. She ALSO is a poopy mess. (Send note to husband: we are nearly out of wipes, and THAT is a pooptastrophe.)

Back downstairs...two girls with clean bottoms and clothes. Rhema is ready for cereal. I pray with her (Lord knows we need a lot of prayer today and every day), the 3rd or 4th little breakfast prayer I've done since it is summer and my younger children have apparently conspired to come to the kitchen at completely random times rather than in a convenient herd, when they can help one another. (Note to self: this needs to change! It may be summer, but Mama needs some kind of consistent schedule!!)

Verity is in the swing. Rhema is eating. Seanin (3yo) is off sulking because I wouldn't copy a coloring page for him. Zaden (5yo) is still waiting (with extraordinary patience!!!) for me to get a new jar of milk for him. Doh! I take care of him and praise him for waiting so patiently without adding to the meltdowns we've already experienced this morning. I start a load of laundry--hooray for me for procrastinating so that I could add the poo items to the load! The oven timer is going off--time to get the bread out of the oven before it gets so hard no one wants it for sandwiches at lunch time.

Reposition Verity in the swing--propping the pacifier back in her mouth. Clean Rhema's sticky hands. Try to placate the 3yo who is still sulking over a nonexistent coloring page. Decide to skip breakfast and fast because it's approaching 9:30 and Zaden is now asking to do his Bible Bee study for the day, and how can I say no to that?! Hold Rhema in my lap while listening (and helping) as Zaden reads aloud Genesis 1:6-19 from my ESV phone app. I'd prefer a real Bible, but my ESV is upstairs and I can't afford to go get it--another crisis would certainly ensue, and poor Zaden would be waiting for me YET AGAIN. We get through lesson 1 of week 3 (yay--this child is right on schedule!) and are reminded that what God made is GOOD and that He is OMNIPRESENT.

This means that GOD is PRESENT in all of this mess and chaos! And unlike Adam and Eve, I don't need to feel ashamed and hide, because my Savior has already covered all my sins. I welcome the reminder that He sees me in the muck and loves me despite my heavy sighs over poop messes and inward laments about just wanting to sit and eat in peace. I pull the 3yo on my lap and assure him we will have some special time together after I pump milk for Verity and eat my breakfast (now at 10am) that my dear 16yo daughter made for me.

And with that...I will sign off and eat said breakfast and hopefully have some time to talk and plan the day with my teens! (Lest you think they've been lazing in bed all morning, Tobin has already finished history and math, Charis has cooked us breakfast, and...actually, I have no idea what Arden has done, lol. 10yo Kenna was upstairs helping me during the mouse and baby wipe crises! I really do have awesome and helpful kids...of all ages.)

Children's Developmental Clinic

At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.

Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)

As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.

We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!

Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.

Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.

The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side note...it has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]

The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."

Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!

So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.

Hearing Screening

Because Verity failed her newborn hearing test, we had a thorough testing session scheduled yesterday, followed by a consultation with a doctor. I drove to where I thought the appointment was (same Boys Town Research center as the GI doc we see) only to learn that I should have gone to the downtown location. Oops. Thankfully it wasn't a problem (other than driving for an extra hour plus pushing everything back, thoroughly filling my afternoon!)

Verity had to be asleep for the test, and thankfully she did great. (Maybe we should have them test her during the night, lol.) Of course, it helped that I held her and kept her pacifier in her mouth while sitting in a cushy armchair. I think I got more sleep during the test than I did the night before, ha!

She had an Auditory Brainstem Response (ABR) test: "electrodes on the head pick up the brain's response to sounds presented to the ears. This test can provide information about the amount of hearing loss and how well the hearing nerve is working."

Because the initial responses showed between moderate to severe hearing loss, the tester then placed an electrode (held in place by another person) against the bony part of Verity's head behind her ear to see whether there was a true lack of ability to hear or whether perhaps the difficulty lies in her teeny tiny ear canals or possibly fluid in the ears.

With the second portion of the test, they determined that Verity is in the normal range for hearing low frequencies, and only in the mild loss category for higher frequencies.

At this time, there is really nothing to do other than wait for Verity (and her little ears!) to grow. Her canals are SUPER tiny, not uncommon for our T18 babies, and it is possible she will later have tubes in her ears and/or wear a BAHA (bone-anchored hearing aid) headband, but she will need to have a bigger head, lol, plus be able to sit up.

Meanwhile, it helps to know that her left ear is better able to hear than her right, and that when we talk with her, we need to talk in a fairly loud speaking voice and try to minimize distractions in the background. (I know, right?!?! Bwahahaha....)

Boots and Bar

May 16, after 7 weeks in casts, Verity was set free...for a few minutes, anyway.

These little feet have come a long way in a short time. [The marks, by the way, are the initials of the doctor who did her tenotomy surgery. Not surprisingly, Verity's skin was extremely dry!]

For the next 3 months, we are in the "boots and bar" phase of the clubfoot corrective measures. Roughly 23 hours a day she has to wear these. See how excited she is??!

Yeah. That makes my hips and knees hurt just to look at her. Poor baby.

The good thing is that she has learned to sleep on her back for the first time! Now that reflux is no longer such an issue for her, it actually seems more comfortable for her to be on her back. Sometimes. Maybe.

Actually, our poor girl is pretty miserable most of her waking moments, especially when it's time to "reboot." I'm not sure how she manages to get a little foot slipped out from time to time, but it happens. And regardless, we check her feet several times a day to make sure she doesn't have red spots indicating pressure sores. (She has a few times; we've learned how to take better precautions to avoid that and are getting better. Of course, now the leather straps are stretching, so we have to figure out just the right hole for buckling.) During the rare moments her feet and legs are free, we try to do some mini-therapy sessions: giving her time on her sides, stroking her feet with various textures, moving her legs so her toes go up toward her face, etc. That part is fun. Strapping her in correctly while she is thrashing her legs and screaming at high volume is not.

Nights are pretty brutal. Days can be difficult, too. She is happy (or at least moderately content) only if someone is holding her and/or holding the pacifier in her mouth. (She can't keep it in her mouth on her own very long at all.) She does nap during the day (like now...otherwise I wouldn't be typing); I suppose we could say she naps at night, too. It's disappointing, though, when we had gotten some decent stretches at night before the switch. We were hoping that after a few days/nights it would get better, but no luck yet. We are hoping and praying she will get used to this sooner rather than later...Mommy is ready to throw in the towel and say forget it already, but I'd hate for all of this to be in vain. Even after the 3 months of constant wear are over, she will still have to do boots and bar for nights and naps...just when we want her to be content and sleeping. <Eye roll>

Prayers for our patience, perseverance, and a decent amount of rest to facilitate a decent amount of brain activity would be greatly appreciated!

Where I'm at...All I Ever Wanted Was a Croissant

This photo...isn't it sweet? Kenna took it for me the evening of Mother's Day.

That was a good day. An early morning walk in cool and windy weather; breakfast cooked by my husband; actually sitting through a whole church service; a yummy crock-pot lunch; a giant paper sack card with markered messages from my kids (I may need to go over the yellow and orange ones with pen so I can read them again someday, lol); some afternoon down time; a relaxed outing with the family (complete with the inevitable meltdown from the 3yo who decided he didn't want to walk after all); and some uninterrupted cuddle time with my baby girl, who melted my heart by grasping my finger with hers. (A privilege not to be taken lightly--her fists are still tightly clasped most of the time.)

Today...today is a hard day. Not so much physically; Verity seems to be resigned to her new boots-n-bar fate (that's a blog post for another time). But emotionally. Mentally. Spiritually. Well, yes, physically too, because all of this is so exhausting. I just want to sleep.

There is much I could write. Much I have wanted to process through writing. Much I am willing to share...when I can. But for now, I will share this...

[If you haven't yet read or heard the "Welcome to Holland" parable, please read it first. It's very short.]

This response by a special-needs mama, "It's Not Holland," so perfectly captures what our lives are like nowadays. It is also very short.

Once you read this, you'll understand what I mean when I say that today is a day when I'm shouting inside, "All I ever wanted was a croissant!"