the lovell crew

It’s funny how life is backwards sometimes. The older I get the more I realize I don’t really know anything. Not like I thought I did. When I was a teenager, I thought my mom was nuts sometimes. Now, I think she knows everything

When I first got married, I thought my husband didn’t know how to do anything the way I thought it should be done. Now, I realize that yes, sometimes he actually has some pretty decent ideas.

Before I had kids, I would see weary moms pushing shopping carts in Kroger & think, “my kids will never…” If you need any proof that I have become that mom, click HERE.

Fast forward several years, throw in a husband, two kids, a dog, a house, a full-time job, and oh yes, spina bifida, & it’s amazing I don’t have a gray hair…yet.

Lately I’ve been thinking maybe the Lord just wants me to learn patience on this journey. That I don’t need pre-conceived ideas about what I would or wouldn’t do in a situation I’m not yet in, that I don’t have to control everything, or that maybe instead of ME helping make MY family into something, HE’s making ME into something.

It seems there’s something about unexpected twists in life that either make you throw your faith out the window, or realize you can’t make it on this road alone.

I’ve been reading from my old devotion book-Streams in the Desert lately. I’d been having one of those days where you wonder why in the world you would choose to serve a God who does things that don’t really jive with your plans. Who lets things happen that you don’t think should happen. Like, why in the world would I love & serve a God who allows my child to have challenges right from the get-go?

It was that night that I dug out my book, and came across this quote.

“The only way to know strong faith, is to endure great trials. I have learned my faith by standing firm through severe testings.”

-George Mueller

I realized that night, that I don’t want to be the person with the shallow faith. I used to think I did. I wanted things my way. I knew best. Slowly, I am realizing that maybe God chooses to give me alternatives to the things I once thought I needed or wanted, & yes, maybe initially I think it’s wrong, or maybe He’s mistaken, or not trustworthy at all. I start to question things.

But as time goes on, I gain a new perspective. I gain patience. My faith gets stronger. I realize, that the things I never dreamed I would want or need, are exactly perfect for me.

Faith recently made her very first solo trip to her mamaw’s house in eastern Kentucky. John & I felt she was old enough to make the trip this year to spend a week with her other grandparents. Zoe-being only eight months old, got to stay home & have mommy & daddy all to herself

Faith got to try out her new playhouse…

Swing as high as she could go…

Swim in the “big girl” pool…

and finally…

sisters reunited!!

Seriously…could they be any cuter? Life doesn’t get much better than this….;)

Lately it seems as though every time I blog, I am mentioning how busy our weeks are. Maybe that should be a red flag! Anyway, this past week was our (hopefully) last super busy week for a while.

Zoe had her three month check-up at Vanderbilt on Monday. Every time we go, I am excited to show off the progress she is making, but yet, it is never far from my mind that we could receive news we don’t want. I was particularly nervous about this visit because it was our first follow-up with the ophthalmologist about her vision since she’d gotten glasses,  & it was also her first urodynamics study with the urologist.

First on the schedule was the urology appointment. In kids with spina bifida, often the nerves to the bladder are affected-especially in kids who’s lesion level is pretty low. We don’t know the exact vertebra that was affected with Zoe, but we know it is low so we’ve expected some bladder issues. Urodynamics studies are performed routinely to get an idea of how the child’s bladder & kidneys look. The ideal situation is a normal-pressure bladder, no kidney reflux, & the ability to empty the bladder completely. Lots of kids without spina bifida have kidney reflux, where urine travels backward into the kidney. A lot of kids outgrow this as they get older, but kids with spina bifida are susceptible to having reflux, especially if their bladder is high pressure.

Zoe did awesome during her test; she loved the nurse practitioner (maybe she has a thing already for nursing since mommy is an NP ). The test lasted only about thirty minutes, and involved placing a catheter in her bladder to fill it up, measure pressures, & using x-ray to see if any reflux was involved. She was not a fan, however, of having to lay still for the procedure & kept wanting to kick the tubing they were using until finally we had to hold her legs still. Mommy is VERY thankful to have that problem

Our results were pretty good overall. Zoe has a normal pressure bladder (yay!) & healthy kidneys. On one side she did have some mild grade 1 reflux (it’s graded 1-5, with 1 being the mildest & 5 being most severe). Our urologist seemed to think she will outgrow it with time since her bladder pressures were normal. She started Zoe on a prophylactic antibiotic to prevent urinary tract infections, and now…we wait. Zoe will continue getting an ultrasound of her kidneys at each of our three month check-ups, and periodically we will repeat the urodynamics study to check for any changes.

The rest of our check-up visit went very smoothly. We made it to all our appointments on time-our PT & OT there were very impressed with the progress Zoe made since her last visit in February. She’s now rolling over like nobody’s business & we are getting close to sitting unsupported. Orthopedics was a pretty uneventful appointment, & we didn’t even see neuro as we had no concerns & he was out that day anyway.

The BIG news, that I was super excited about-Zoe’s vision is getting BETTER!!  Ophthalmology said he could tell a dramatic difference in her eyesight which is great news. For now we continue having her wear her little glasses, which I am totally okay with. I have grown quite attached to them over the months-I think they add some baby character & individuality

In other news, Faith is now officially a big girl! John & I debated for some time on when to make the big switch to a toddler bed. It was assembled & waiting in her room. Being a self-described type A control freak, I hate transitions of all sorts so I kept putting off the new change, that is, until John called me at work one day to tell me Faith got OUT of her crib. Yep, she escaped. That night became the first night in her big girl bed, and she loved it. Zoe moved from the pack n play to the crib that night, and the rest is history. Potty-training, however. Another story (I’m open for ideas )

I have discovered something new I love this past week. Since Faith has moved to her big bed, she has discovered how fun it is to snuggle up under the blankets in bed. Of course, I’m taking advantage all I can while she actually wants mommy around. She loves to have me or daddy snuggle up & sing songs (of which Old MacDonald is currently the favorite), or play with all her stuffed animals.

The rest of our week concluded with work days, a few random appointments, & a couple cold viruses. But all is said & done, and this week is shaping up better so far. The girls have a big weekend planned at the grandparents’ house, which means….it’s DATE NIGHT

It’s only May 6th, & already our month has been jam-packed! I’m not sure why things are so crazy, but they sure are!

Last weekend we attended Kentucky’s first ever Spina Bifida mini-conference. It was AWESOME! I have to admit, I am very thankful we live in Kentucky because our state really does have some amazing resources for kids like ours! The girls spent the weekend getting spoiled at their Nana & Papaw’s house, & we headed to Louisville. We attended some fantastic seminars taught by neurosurgeons, urologists, even a developmental pediatrician who heads up the national Spina Bifida Association, AND has spina bifida himself (that one was our favorite!).

That weekend we also had the opportunity to hear a keynote address given by a 19 year old with spina bifida…his name is Aaron Fotheringham & he’s basically like a spina bifida celebrity! He is the only person in the world to have ever completed a double backflip. In. a. wheelchair. Aaron shared his amazing story  & had such a great perspective on things. I even teared up a little during his standing ovation.

This past week we’ve also been busy in PT/OT with Zoe. Since birth, her right foot tends to turn inward. She can move it, but the muscle groups on the right side of her leg are weaker than the inner muscles, so that makes her foot tend to go in. We had her tiny pink AFOs fitted to try & correct it by keeping her foot in the correct position, but she is already outgrowing them & they were too tight on her heel.

So…this week we’re up to something new!

Kinesiotaping!

Using kinesiotape is something new to me. The best way I can explain it is that it’s sort of like athletic taping. Her therapists (who rock, btw!) used the kinesiotape on the weaker side of her right foot to help pull, stretch & strengthen those muscles. She will keep her ankle taped for 3-5 days, take a couple days off, then retape at our next therapy session. I’m excited to see if we get any results from this method. If not, we’ll try the AFOs again & our last resort would be casting her right foot for several weeks which our PT seems to think won’t be necessary.

Also, we have a baby who is starting to discover…mobility Zoe has recently begun rolling from her belly to her back, & is coming close to rolling the opposite way. She makes it over on her side, & then realizes she doesn’t want to go back to her belly, so she rolls the other way Here at our household, we have begun celebrating every.little.thing. The simple fact that she can move her legs to me is nothing short of a miracle, so I no longer take even the smallest of baby milestones for granted.

Another big deal at the Lovell household….

Being sisters

The girls are so funny (& cute!) together. Faith now wants to be wherever Zoe is, & always wants to sit with her, rub her head, & give her toys. Zoe looks for Faith when she hears her voice & laughs when she repeatedly brings over plastic Dora figures for a “Zoe kiss.”

I could sit & watch the two of them together all day long. I remember worrying so much about how Faith would adjust to not just having a little sister, but having a little sister who had spina bifida as well. I am finding all my fears were for nothing. They love each other so much. Faith could care less about Zoe’s spina bifida. It is really NOT a big deal to her or us (most of the time ) She’s just happy to have a little sister to kiss & love on.  And Zoe is getting pretty attached to her too.

When Faith turned one last year, I was a mess. I couldn’t believe my baby, the one we’d waited for, and prayed for so long to have was a year old old! I kept pouring over my photo books from her birth, remembering that day. Surely the birthdays to follow would get easier.

Well, for any new moms out there who might be reading this, let me tell you!

It doesn’t get easier.

I really was convinced I would not be emotional about Faith’s second birthday. After all, it is two. Not the first, not kindergarten, not her sixteenth birthday. Just two. The terrible two’s at that.

But while she napped, John & I snuck around decorating. Our house became a Dora explosion. The grandparents came bearing gifts. The cake was ready (& AMAZING )! Her swingset was assembled, the crab sandbox ready with sand toys, her picnic table covered in gifts.

Finally, she woke up, I got her changed into her Dora attire. No clue that everyone was there & waiting. Balloons decorated the birthday girl’s chair. She bounced around singing, “so happy, so happy,” & told me “no” a million times when I asked her if she was ready to leave her room. Finally, I convinced her to hold my hand, & off we went.

The party was a success, but the entire time she sat in her chair eating ice cream & cake, asking for more “Dora stars” (fondant stars) I kept wondering how did we get here? How is she two years old already? It’s true-I’m going to blink & she’ll be moving away to college.

My heart just can’t take it.

I don’t like thinking that the day will come when my babies won’t be babies anymore. When they won’t want momma to sit with them, hold their hand, play in their new color house, or watch Blues’ Clues. As a matter of fact, the day will come when they won’t even like these things anymore. They’ll be interested in clothes, make-up, boys. 

So, for today at least, while I still have the chance, I hold their little hands. We watch all our shows. We swing outside & play in the sandbox. I try to savor every little toothless grin & appreciate all the repetitive “mommy help you’s” that I hear.

Because I already hear Faith asking to sleep in her “big girl bed” & it’s never far from my mind, that yes, both she & Zoe are becoming “big girls.”

Happy 2nd birthday to my sweet Faith. I love you more than you could ever know.

There are some things in life that happen that become printed in your mind, stamped on your heart forever. No matter how much time passes, you don’t forget. You remember. These events are like turning points in your life.

Losing my dad at age 18.

The day John proposed.

My wedding.

Those + pregnancy tests

Faith’s birth.

The diagnosis.

Zoe’s birth.

As we are rolling into spring, so much reminds me of where I was this time last year.  I was clueless to the events that would soon come to pass that would change me personally as well as my family forever.

God was preparing to do a big work in our lives, and we didn’t even know it.  I think about how many times God is busy, working all around us, weaving things together, spinning things into motion.

And we are unaware.

I wonder what Mary thought about when she recalled the days she was oblivious to the fact that she was carrying the savior of the world. Those days right before her world got spun upside down with news she could’ve never dreamed of.

This time last year, my biggest concern was what Faith would wear for Easter Sunday. How would I manage two babies? Did I have enough vacation time for both maternity leave AND summer vacation.  Concerns that seem so trivial now, in hindsight.

It’s funny how little things make you remember those days. When I pull into the parking lot next to the maternal-fetal doc’s office I remember that day John & I sat in his parking lot, crying & angry because we felt God had abandoned us. Looking over last year’s Easter pictures reminds me of the person I have become since those days.

What a difference a year makes!

John & I recently were having one of our crazy discussions, and we were talking about how some of the best songs you hear on the radio have these wildly crazy notes in them. How songs are boring if they are all in the same note. It’s only when something is different, a little “off” that it makes you take notice.

I think sometimes the same is true for our lives. That God allows wildly crazy curveballs to be thrown at us, and yes, at the time it’s hard & difficult, & sometimes it just plain stinks. But those are the best stories. The greatest examples of what HE can do with lives that are truly HIS.

That’s my prayer for my family.

That OUR life together, & OUR story, will be one wildly crazy “off” note.

Happy One Year Anniversary

Tonight was a first for our family.

Grocery shopping party of four.

Perhaps this picture can sum up our night for you …

Disaster. Epic fail. Whatever word you want to use to describe it, it’s probably fitting.

Normally, John & I do our grocery shopping on a night the girls go to visit Nana & Papaw, or I will go by myself. But with the busyness of our weekend including appointments, therapies, traveling, etc., it just wasn’t possible.

Time to go it alone. Or in a party of four, I suppose I should say.

I fully expected Zoe to be the cooperative one. She’s usually more content & relaxed as long as she’s got a full belly & a nap under her belt. I had a discussion with both girls before we left, that I expected them to be on their best behavior to let mommy & daddy get everything we needed at the store. Everything I expected was wrong.

We left with a diaper bag full of goldfish crackers, diapers, Dora DVDs, baby wipes, a hope & a prayer. We came back with a load of groceries, most of which we haphazardly threw into the cart in our efforts to get out before we got kicked out for disturbing the peace. Oh, and minus a few wipes, snacks, diapers & Zoe’s glasses’ case.

I think the Lord needed a good laugh tonight & he must’ve found it amusing to watch us attempt to steer an oversized buggy with a red race car attached to the front, a toddler inside the race car holding a sticker book & a bag of chocolate chip cookies while crying to “hold mommy’s hand,” & a 5 month old in the front letting everyone in Kroger know she’s got a good set of lungs.

I knocked over several displays trying to steer that darn race car cart. Whoever invented the thing sure didn’t test drive it first!

We ate dinner in the car, sitting in the parking lot of Wal-Mart because my youngest offspring decided to continue letting us know how displeased she was with the whole trip unless her belly was full to the max.

We sped out of there as quickly as possibly, vowing NEVER to make the mistake of a huge grocery trip with two kids that young ever again. We drove home singing Zoe to sleep with whatever songs we could think of…a mash-up of Baptist-hymnal-meets-nursery-rhyme sort of deal.

All by the light of my iPhone which Faith used to pop bubbles in a LED aquarium while occasionally putting in a plug for her favorite cartoon character Boots & asking for more “Dora Juice” (aka apple juice )

What a night. Whew!

March is a big (& crazy!) month here in the Lovell household. Lots of excitement…

Someone should’ve warned me about the terrible two’s. Seriously. It’s like just this month something  has completely taken over my sweet eldest child. Faith has gone from sweet spirited child to one who literally drops to the floor in full-blown tantrums in a matter of seconds. Add teething to that & you’ve got a bad combo. John & I have racked our brains trying to figure out what to do, are we doing something wrong, etc.

Here’s a sample conversation from tonight while I was preparing dinner…

Me: “Faith, we’re having mashed potatoes for dinner tonight….your favorite!”

Faith: “MASHED POTATOES…..AGHHHH!!” (Drops to the floor screaming for mashed potatoes).

After giving her some mashed potatoes in an effort to maintain peace until dinner was ready, she discovered the canned corn sitting on the countertop.

Faith: “Open corn, open corn….corn stuck! AGHHH!!! (More screaming & dropping to the floor in a dramatic display over corn).

So…if any of you more experienced parents out there have any tips to help us make through the next year & manage the tantrums, I’m totally open for suggestions at this point. Technically, she’s not even two yet! We’ve still got one month to go.

On another note, Zoe is having a big month also.

She got her first pair of glasses,  to which I must say, make her look even more cute…she’s a total smarty pants baby now if that even exists

Zoe will be fitted for her first little ankle splint next week at physical therapy. Her right foot turns in slightly at the ankle, so the splinting will help keep it neutral & after some time she won’t need it anymore. We will move to more firm little ankle braces called ankle-foot orthotics (AFO’s) at that point once she’s ready to start standing. For now, she’ll just wear her new splint at night.

Therapies are going well; we are really focusing on building upper body strength currently. She loves to sit up & look around, but isn’t so much a fan of tummy time. So…we’ve got lots of new objects to try & motivate her more on her belly like exercise balls. She’s also sitting up well in her high chair & is a HUGE fan of oatmeal now that we’ve started solids. I have a feeling she’s about to get a lot more chunky

My brother returns from Afganistan sometime this month He’s been deployed for a year now, and we are more than ready to have him home. The last time he saw Faith she was about nine months old, & he’s not met Zoe yet. The word from today is that he should be leaving there in the next couple days, so hopefully sometime in the next couple weeks we’ll be able to meet him at the airport for a big family reunion!

That’s it for now-short & sweet…the girls have finally stopped talking in their room & are asleep, so I have learned I must take advantage of the free time to catch up on much-needed sleep!

Good night

John & I have sort of always embraced the idea that less is more Even before kids, we tried to make it a priority to not overcommit ourselves (yes, I realize some of you are probably laughing at this!). We tried to make time for date night each week. It was tough.

After kids, it got tougher.

No longer afforded the luxury of just going out spontaneously, our time has become very scheduled. Life revolves around who’s working what day, when does the babysitter come, what time we get off work, what the weekend plans are, etc.

Back in December, John & I started to realize we were overcommitting. Between the holidays, work, church, appointments, therapies, family visits, etc., etc., etc., we had become overstressed, overtired, worried, worn out, whatever word you want to use. That  was us

Something had to change.

Several weeks, a lot of prayer & a little planning later, & behold! New scheduling at the Lovell house.

I must say, this has been one of the best things we’ve ever done for our family. No longer do John & I just trade off “shifts” with caring for the girls. We’ve actually coordinated our schedules so that we have time home. Together. As a family. And, thanks to an awesome sitter, we’ve been able to avoid using daycare which is a HUGE blessing. As an added bonus…John also gets to now attend our Friday PT/OT appointments so that he can be a part of what’s going on with Zoe’s therapies.

This past weekend was one of our first that we got to enjoy in this new arrangement. Our end-of-the week/weekend plans consisted of lots of playing outside, taking walks outside (Faith’s new favorite thing!), baking cookies, & even having a date night for momma & daddy

I have always been a believer that having solid family time together is crucial for our kids…I am realizing how crucial it is for me too

The past.

Sometimes it brings us a smile to think about it. Sometimes it haunts us.

This week, I was brought back to the past.

Back to the day. May 24.

That is the day I will never forget. The day everything as I knew it-life, love, fear, hope, joy, pain, etc., etc., etc., changed forever.

On that day, John & I were told we were expecting a baby girl, and that she would be born with spina bifida. And we were given three choices. Terminate, surgery after birth, or enroll in a research study currently being conducted called MOMs (Management of Myelomeningocele Study). We were given lots of options as to our baby’s prognosis, no answers, sick stomachs, & a CD in hand with information on the study. We went home to mourn, cry, pray, & process.

And then we began to prepare.

The choice we were faced with was whether or not to participate in this research study. It involved two groups-a prenatal surgery & a postnatal surgery group. The decision of which group we would participate in was not up to us, but a computer. We would have to fly to Philadelphia for an evaluation, and if it was determined we qualified to join the study we would be randomized to one group or another. If we randomized to the prenatal group, there would be no time to return home, & I would undergo general anesthesia the next day while neurosurgeons repaired the open area on Zoe’s back. Yes, this involved opening the uterus to access the baby, complete the surgery, and close everything back up again. We would have to remain in Philadelphia for the duration of the pregnancy & delivery. The majority of the prenatal babies were born premature, but we were told there was a 50% reduced risk that Zoe would need a shunt.

We had initially considered this as a serious option for us; Vanderbilt was participating in the study, and we felt we could make arrangements to live in Nashville for the rest of my pregnancy if we were chosen for prenatal surgery.

And so, the praying began.

We prayed for peace, for direction, for clarity. We were desperate for the Lord to make this decision for us, as it would disrupt not only our lives, but Faith’s life as well. She was 13 months old. I knew we had to get it right. I could not live my life with regret. I felt as though I were having to choose between my children. One who was still a baby herself & needed momma, and the other who was facing challenges from even before birth, and she needed momma too.

The decision, we felt, was made for us a few days later when I received a phone call that Vanderbilt was no longer participating in the MOMs study. If we wanted to still participate, it would be necessary for us to move to Philadelphia temporarily. Faith could not come with us. We knew that would not work. Not for just a 50% less chance of needing a shunt. We felt this was the Lord closing the door for us on this decision. We chose to move forward with having Zoe’s surgery after birth at Vanderbilt with one of the best neurosurgeons in the country. She would be born, have surgery, recover in NICU, go home & start the next phase of our journey.

THE END.

That was until this week, when the final results of the MOMs study were published. Perhaps you saw a segment on the news about the story. I was quite a bit distraught at the way spina bifida was portrayed in the media this week. As though kids who do not have fetal repair have no life. Words like devastating were used. Maybe that’s what ABC or NBC would see if they looked at my sweet Zoe. But I do not. I see a happy, content, chubby-cheeked four month old who is learning to laugh when she “flies” in the air, loves to be held, and has her own opinions when it comes to what she wants I do not see pity, or fear.

Yes, I see a child who will have to work harder than most to walk or run. Or maybe she will chose mobility in a different form. I don’t know & it doesn’t matter. Most importantly, I see a child that I pray grows up to realize each life is purposed by our creator, and nothing should be taken for granted.

I see a child that I pray one day stands before others to praise HIS name for the works completed in HER life.

I struggled with peace this week over our decision. What if we had pursued the study & been chosen for prenatal surgery? Would it have made a difference? The results did prove a decreased need for a shunt, and some improvement in mobility. But there is still no cure.

What if….what if….what if….

I came to the conclusion that it doesn’t matter. I made peace with our decision. God led our family tremendously during this time, and I refuse to doubt it again. Zoe is a rock-star and doing amazing.

I can’t be that person who lives life in the past. I have no regrets. There were no guarantees with either prenatal or postnatal surgery, and there still aren’t. The study was a great one that offers promise to tomorrow’s spina bifida babies as well as many other types of fetal surgeries. It truly is a medical breakthrough & made possible by amazing parents who were able to participate, many of whom have become some of my closest friends. I realized, though, I can’t live in the what-ifs of yesterday all the time. Because the honest truth is, our great God has created our child for today.

For such a time as this.