A little update and a little project

Art thou weary, tender heart?

Be glad of pain:

In sorrow sweetest virtues grow,

As flowers in rain.

God watches, and thou wilt have sun,

When clouds their perfect work have done.

-Lucy Larcom

For those of you who still check in on Musings on Hope, I'd like to thank you deeply for all your prayers over the past five years. I cannot believe it has been five years since I went on bed rest with PPROM. God has truly answered our prayers in ways I never thought possible.

Maggie is doing amazing! She still works so hard every week - with at least four different therapy sessions. But starting in a few weeks she will attend the same school as Mary Lawrence and I just want to pinch myself: Is this really happening!? The same child about which we were told she would never make it to viability during pregnancy, who would never survive birth, who wouldn't have lungs, who would be severely disabled if we didn't terminate the pregnancy- this child is going to school with her older sister?! Incredible.

Yes, Maggie still wears her braces and has a feeding tube, and struggles with balance issues. But those things will eventually (and hopefully) go away. But the fact that Maggie is able to live a somewhat normal life fills our hearts with gratitude. At least once or twice a week Justin and I get teary-eyed looking at our "miracle baby." Praise God from whom all blessings flow. Truly we have witnessed a miracle and an answered prayer in Maggie's life.

I know I haven't been active with blogging the past year or so. Part of me just has been relishing in the mundane but important days of raising children. We have also thoroughly enjoyed having a healthy, happy baby in Neely. Wow - she truly is a gift, so happy and funny!  She brings joy to our lives everyday.

Mary Lawrence is starting the second grade and getting so tall! I tell her all the time she can't get any older! My little blonde-headed baby is getting so mature and confident. And I am so proud of her.

While I wish I could say my blogging silence was also because life was so much easier - and I therefore didn't have much write to about - the truth is life has been rather difficult these past few years. We've been in a quiet phase of transition just dealing with the less dramatic but still consuming issues of Maggie's life: schlepping to therapy and checkups, working on her consuming more calories (a constant struggle), dealing Maggie's extremely strong-willed personality, and various other things that aren't specific enough to write about. Frankly, I've been exhausted - physically, emotionally, and mentally.

On top of that, my beloved grandmother unexpectedly passed away this past Spring and that has been a big blow. When you lose the person you spoke with every other day for an hour - who knew the ins and outs of all your struggles and triumphs and who was your prayer warrior - it is devastating. Understandably, this has been a quiet summer of reflection and, well, lots of crying and praying!

However, in reading through the Streams in the Desert devotional I have gained a deeper understanding of suffering and what a blessing it is to believers. Sound strange, I know. But as I have said before, the time I felt closest to the Lord was when I was alone in my stark Baylor hospital room, pleading for mercy and healing. In my pain this summer, I have felt the same peace and understanding.

But losing my grandmother has also pushed me to do something I have wanted to do for years: create a place for people to go to find out what to do, say, and give in certain situations. In my trials these past five years I have witnessed many examples of love and thoughtfulness (thank you sweet friends!), but also some very hurtful words and actions. I believe most people want to live a life that is deep and full of grace, but oftentimes don't know how in certain areas of their lives. I want to use my experiences to create a guide where people can go to find out stuff like: My friend just had a miscarriage, what do I say? What is a thoughtful gift for a teacher who has gone above and beyond for my child? What do I do when I forgot to send a thank you note for a really special gift? Or how to I raise my children to have manners that are genuine and respectful? I want to help make this kind of gracious way of living both appealing and effective. 

So I invite you to visit my little summer project, DoSayGive (www.dosaygive.com). Some might say it's an etiquette guide, but it's more than that. DoSayGive seeks to help us to sift through the mediocrity and rubbish of our culture and live meaningful and deep lives, lives that can give so much to others. It seeks to restore the lost art of refinement, for my generation and the next. I would love for you to join me there. 

Thank you again or the support and prayers over the years. Many of you I have never even met, but still faithfully prayed for Maggie. I humbly ask for your conitnued prayer as we begin this next stage of Maggie's life. I cannot wait to see what God has planned for her. Already God's testimony has touched so many people through her story and no doubt will for years to come. 

Gratefully yours,

Lee (and family)

"The burden of suffering seems a tombstone hung about our necks, while in reality it is only the weight which is necessary to keep down the diver while he is hunting for pearls." - Richter (Streams in the Desert).

Fourth Birthday

Four years later...we feel so blessed. Happy Birthday, sweet Maggie. We love you and your sisters so much. You are and will always be our "miracle baby."

Calories, Calories

I have an eating disorder. Yes, I have become obsessed with counting calories and looking at labels. I probably think about food several times an hour. But it's not my weight I'm obsessing over. It's my child's.

Yes, in my quest to get Maggie to eat enough to grow and to eventually get her g-button removed, I have become crazed with food. My kitchen contains all the highest calorie/low-volume foods Maggie will consume: Babybel cheese, Avocado, eggs, bacon, sausage, organic baby yogurt, snack size Hershey bars, pre-packaged mini donuts, and smoothie pouches. (Yes, little Maggie who didn't eat a morsel a year ago will and does eat ALL of these things!)

Now it may not be a lot, but she does eat a decent amount at every meal. Yet, frustratingly, she is still very thin. Partially because she is so active and has a crazy metabolism, but also because anytime she gets a cold or illness she'll stop eating completely for 4-5 days. (Madness!) So we are always trying to catch up and attain a good, healthy weight for her.

Maggie has been hovering around 28 or 29 pounds for about a year now. And it's just driving me crazy. So despite my lack of success with dietitians before, out of desperation I decided to try yet another one. She came out last week and was super nice. But I immediately brushed her off when at first she said that, according to Maggie's weight and height, she needed 800-900 calories a day.

I scoffed. I knew between her oral eating and nightly tube feeds she has been getting about 1200-1400 calories on a daily basis and is still not gaining weight. Even with that huge caloric intake she still has not topped thirty pounds on the scale and is (I think) still frighteningly thin.

Thankfully the dietician emailed me yesterday and said that when she considered how active Maggie is - and how many calories she must burn while doing six therapies a week and wearing the brace - she really needs 1560 calories a day. I think that number is probably right on, despite the fact that it's crazy high for a tiny three year old!

It seems insurmountable to try to get 1560 calories a day into a little person like Maggie, even with supplemental tube feeding. That's more than some health-conscious adults for that matter! So please email me or comment if you come across any high-calorie/low-volume food that I might have overlooked. Yes, we drizzle butter and oil on everything. I soak her waffles in syrup and she has bacon or sausage nearly every morning. And every night I tube feed her 300-500 calories worth of formula to make up for whatever she didn't eat that day. (Any more than that and she will vomit; trust me, I've tried.)

In reality, the biggest hurdle we face is that she won't drink much of anything besides water (which is strangely typical for kids with similar feeding issues). This is maddening on a daily basis when I see Mary Lawrence gulp down eight ounces of milk in about four seconds. So since I can't get her to "drink" her calories like just about every other American child, I have to get her to eat them and that's just a constant struggle. (Honestly, as I write this I realize I need to start praying Maggie will like whole milk because three glasses of that a day would be life-changing!)

The good news is that I do see the light at the end of the tunnel as far as getting her button out. I feel it will happen in the next year or two.

So it's that hope that keeps me going at night when the last thing I want to do after dealing with three screaming children all day is stay up and pump liquid into my daughter's stomach. But when I do, I remember the many nights I pleaded to God while tube feeding her, praying for him to heal her feeding issues. And look how He has worked!

I can't help but laugh every time Maggie says, "I'm hungry, Mommy, can I have a snack?" God is good. He is faithful.

Rainy Day Revolt

One of the hardest things about being the mom of a child with a lot of needs is that there is absolutely no thanks, no "mom, I appreciate all you are doing for me." Instead, the child who you do EVERYTHING for and more takes their anger and frustration about their difficult life out on you. And you are left constantly second-guessing yourself. All these things happen on a daily basis.

* * *

On this rainy afternoon I dragged all three children out of the house to go to swimming therapy. Everyone, including myself, would have liked to snuggle up on the couch and watch tv or read a book like I'm sure a lot of families in Dallas did today. But because we miss so much therapy due of sickness or doctor appointments, it's hard to justify not going on days like today when we don't have anything else to do. Every increment of therapy really is so critical for Maggie after she has Botox.

So it was on with the raincoats and out the door at three o'clock. But as soon as I locked the back door and turned around Mary Lawrence slipped on the top step and flew through the air, over three steps, and landed with a thud flat on her face. (Is it normal to want to scream when your children hurt themselves? Because that's what I wanted to do!)

Thankfully she just had a bloodied knee and not a broken leg. After a few minutes calming and bandaging her, back out the door we went in the rain. Twenty-five minutes in downtown Dallas traffic forced us to be super late. So we have to run across the parking lot in the rain, baby screaming and ML still sniffling, to get Maggie dressed for the pool.

But she won't go.

She starts crying that she doesn't want to go in the pool. I tell her she has to go and try to pry her hands off me. But no, this waif-like child clings to me with all her strength, and starts screaming as if threatening to go into full meltdown mode in front of all the sweet yet curious elderly people doing water aerobics.

I don't give in. I threaten her while ripping her hands off mine and then plop her in the hands of the therapist.

But she still sobs.

I try to bribe her. Threaten her. Anything to get her to stay in the pool and make this trip worthwhile. I go sit down and pull out my phone to try to show her that her crying isn't going to help. But she continues, reaching her hands out to me as if she is in deep pain and calling out for relief...but I refuse to give in.

The poor therapist tries to get Maggie's attention with pool toys and water guns. But her tear-soaked eyes are still locked on mommy.

I just know all the old ladies rinsing off nearby think I'm cruel. But I don't care. There is absolutely no reason why she should be acting this way, I tell myself. She was fine all morning. She had a nap. What is the deal?!

I starting talking to her in an angry tone. No help. Then I try a (fake) sweet tone. No luck. I tell her she can pick out Skittles in the cafeteria. No takers. Watch the Saige movie again. Nope.

Five more minutes of crying and still she refuses to participate. All I can think about is money down the drain, a whole afternoon wasted, and four out of four of the girls in our family at the end of their ropes.

Fine, I say angrily, get out; we will go home. Maggie immediately stops crying and I gather up our belongings and rush out the door, apologizing profusely to everyone in our path.

Then I do something really mean. On our way out to the parking lot we stop by the cafeteria and I let Mary Lawrence pick out candy. Maggie sobs when I tell her she can't have Skittles. You should have done your therapy, I tell her. Cruel, I know.

See, the life of a child like Maggie is full of people manipulating you. If you eat this, I'll let you watch tv. If you don't put your brace on, you won't get to read a book before bed. If you just get on the ball and do your exercises, I'll let stay you up late. If you don't, I'm taking away your favorite lovey.

In a desperate and pure effort to get this child to thrive, we have totally manipulated Maggie in a way where she is now (understandably) angry and manipulations no longer work because they are now rendered useless.
And if she decides, like today at the pool, that she doesn't want to do something, then there isn't a darn thing we can do about it. Except punish her. And then question why you punished her by withholding the one thing she really needs: calories.

Yes, the whole thing of raising a child like Maggie is so confusing and convoluted, especially when you strap your broken-looking child into her car seat.

Tears rolled down both our faces as we drove home. And I stopped and got her some more Skittles...

Maggie's Week in Instagram

A while back someone commented to me how much better Maggie has gotten with time. And I wanted to say, but I didn't, that it wasn't time that made her better. It was her hard work and sheer determination to do things other children do. There is NO way Maggie would be where she is today without all the therapy she has endured over the years (and the goodness of God!).

While she looks really good and does things most children do, what nobody sees is that Maggie still has about seven appointments a week- two physical therapy appointments, two speech, one occupational, one aquatic and add on there one doctor appointment and that's usually a pretty normal week. Of course, that doesn't include the twice a day (painful) stretching and twice a day (exhausting) strengthening exercises we do at home without the therapists, plus the taking on and off of braces and let's not forget the practice of eating.

I instagrammed a week of therapy and appointments this past week because I wanted to document how hard this child works. In fact, we call it "Maggie's work."
And it never stops.

We are so proud of her and often forget she is only three and a half years old because she is so mature and aware after all she has gone through. Most three year olds would not do well spending their weeks doing all that she does...

Enough is enough

Let's face it, Maggie is a pill. She's the most strong-willed child I know. I am thankful for it for obvious reasons, but it also drives me to the loony bin at times.

The potty training issue is a good example of this madness. We have been working on this for a year now. I have tried bribery, charts, stickers, candy and everything in between. I have even stooped to making her go get her pull ups and wipes and dispose of her dirty diapers herself to no avail. For goodness sakes, we even had an MRI to make sure she could control her urinary and bowel movements. (And, yep, she can.)

Here is a recap of my failed manipulation attempts:

Me: “Maggie, you are almost four years old, don’t you want to go potty like a big girl?”

Maggie: “No, mom, I don’t want to go potty; I like you to change my pull up.”

Me: “Maggie, if you start going potty I will buy you whatever toy you want. Anything you want, Maggie, a Minnie Mouse toy, an American Girl Bitty baby outfit, a tricycle!”

Maggie: “It’s ok, mom, I don’t need any new toys. I’ve got lots of toys.”

Me: “Maggie, I know you how much you love school, but if you don’t go potty by yourself you can’t go to school next year and your teachers would be so sad. Think how sad your friends Hattie and Evelyn will be…”

Maggie: “Ok mom, I don’t have to go to school. I will just stay home with you while Sissy goes to school. We will have fun.”

Last Friday I hit my breaking point when Amazon delivered an obscene amount of diapers, pull ups and wipes. That's it, I told myself, I am no longer going to have two children in diapers. Just not going to do it. Maggie can ruin every rug and piece of furniture I have, I don't care, I am not putting pull ups on her anymore.

So I started my third "official" potty training attempt trying the John Rosemond method:

Me: “Maggie, I just got off with the doctor and he said that now that you are three and a half you can’t use pull ups anymore during the day. You can only use them at night.”

Maggie: “Noooooooo, Mom!!!!” (Sobbed for thirty minutes looking like she lost her favorite toy.)

I know Maggie has a tough life (I'm actually instagramming a typical week of therapy for her because it is so crazy how hard this child works) and I feel bad being so hard on her when she is already working on so many other issues. But I had a revelation: I'm not doing her any favors in life by doing everything for her, including changing her dirty diapers. I've been her nurse for long enough, now it's time to be mom.

(We are going on day 6 of getting rid of the pull ups and she's still not potty trained. Not giving up if it takes me all summer….but you see me at the American Girl store buying something ridiculous now you will know why.)

#determination

Give me a Break

I'm sorry, am I supposed to feel sorry that the terrorists at Guantanamo Bay are being tube fed as a result of their ongoing hunger strike? People are so outraged about it. Give me a break... This is how I fed my six month old preemie who was less than 12 pounds. Nobody was outraged about that.

Go to any NICU or feeding therapy facility and half the children are fed this way. It kept my baby alive and I was thankful for it, no matter how horrible it was to insert that slippery tube up through her nose and down into her stomach (and witness way more gagging than Mos Def endured). At least those prisoners have medical professionals to do it...I was a sleep-deprived and desperate mom doing this in the middle of night. If my preemie who was literally wasting away before my eyes can handle it, I'm sure those grown men - who also happen to be terrorists - can, too.

Yeah, no sympathy here.

Summertime campout with daddy!

Sweet times.

Neely was baptized last weekend and our family came to celebrate. Something about baptisms, welcoming children into the covenant family, just makes tears well up in me. Standing there holding my sweet girls hands, watching Justin hold our precious baby as water was poured over her head...too sweet for words.

Botox, please!

Maggie has been falling A LOT lately because of the tightness in her leg and her neck which causes major imbalance. She usually gets Botox every three months, but this time around we had to wait five months. And you can really tell a difference. You know you are a terrible mom when you start getting annoyed at your child for falling all the time! I never thought I would be so thankful for someone to inject poison into my baby, but boy does it make a difference.

I am so thankful she is well and could have it today. We will start going full speed ahead with our stretching and strengthening exercises to try to get her leg straighter and her neck, too! It's baby steps, what Botox provides us, but I am thankful for whatever we can get to help
her live a stronger and safer life.

She insisted on wearing her VBS shirt to the hospital because she was so sad about missing today.

...And Neely turned 6 months yesterday. I wish I was with it enough to do those cute month-by-month photos everyone posts on Facebook, but I'm not, and I'm over it!

Ordinary yet precious

I've told so many people how much I appreciate having all these milestones and experiences I didn't have with Maggie. For example, I loved cuddling and carrying around my newborn in a sling (which I wasn't able to do with Maggie because she was attached to large oxygen canisters!). And having her nurse and eat until she's full - or empty a bottle - is so satisfying. Watching her roll over and do tummy time without screaming in pain (like Maggie did because her g button bothered her so much) is more enjoyable than I thought it could be. I have even drawn out dropping those late night feelings because it is such a precious time for me to rock my sweet, healthy baby. I just look at her and want to cry thinking about how full my heart is...

While I have thoroughly enjoyed every minute with Neely, there is one thing I have had creeping anxiety about: starting solids! Having a child with feeding issues makes you always fear that you'll have the same experience again. The odds are so small, and I know Maggie has a complicated medical history, but still, the fear exists because it is such a difficult and exhausting, nearly life-consuming issue when your child refuses to eat.

But Neely is almost six months and I realized I couldn't put it off any longer when she started grabbing my chips and salsa and tried to shove them in her mouth. So we started rice cereal this weekend. The older girls had a blast and it was so good for Maggie to teach her younger sister how to "take bites." It was a lot of fun and I don't think I need to worry about Neely not eating- she loved it. Another "normal" baby experience: messy hands, cheeks, and, well, everything else!

Happy Mother's Day!

I am so blessed with my beautiful girls and particularly thankful for our sweet little baby this year. God is so good to give us another healthy and JOYFUL little baby. I truly treasure every laugh, smile, late night feeding, and, yes, even every diaper change. I don't know if I have more perspective because of what I went through with Maggie or I'm not as stressed the third time around, but I am enjoying every single minute with my baby.

Neely turned 5 months yesterday. How I wish time would just stop so I can treasure these moments even more!

Good day

Maggie was an absolute angel yesterday. We were at the hospital most of the day and she never complained. Not once.

We met with her neurosurgeon after the MRI and the good news is that her lower spinal cord (where she had surgery several years ago) looks fine. No more surgery needed!

One of the reasons she had the MRI is because lately we have noticed Maggie falling more and her right leg has gotten super tight. Her gait is not like other three year olds and, most concerning, she is still not potty trained. All these things are controlled by the lower part of the spinal cord- where she had surgery a few years ago.

I've been bribing her and guilting her over the last year to use the potty and, in the back of my mind, I had the fear knowing there was a real possibility she couldn't control herself and, therefore, couldn't be potty trained. Thankfully, the MRI cleared those fears. So we'll keep trying...

As for her gait and leg stiffness, he thinks she will always have that. He says the reason she is falling a lot is because she is trying more things, getting more confident, and the probability of her falling increases with that.

Frankly, it's hard to hear that your daughter will always struggle with walking and running and movement in general, but I kind of figured that was going to be the case. Her leg brace and shoes and, of course, therapy will help her compensate as she gets older. But as grateful as I am for everything else we've been blessed with, it does hurt my heart to hear that. Whenever I see her around her peers it pains me even worse, because the older they get, the more that physical gap widens. I see it at playdates and at the park all the time- Maggie will often sit on the outskirts and watch because she can't keep up with other rambunctious three year olds. I'm sure she also fears being knocked over (which happens often). No parent ever wants their child to struggle or be left out because of physical issues, even the ones who know they should just be thankful their child is walking at all. It still hurts.

In other news, he told us he thinks she needs to wear her halo brace more than we are doing now. So now we have four different doctor's opinions on how much she should be wearing it and they are all different! Very frustrating, but like so many things I will just have to go with my gut because, as this renowned neurosurgeon said today, Maggie is a mystery and has never fit into a box when it comes to diagnosing her. He said he can't give us any more direction on her neck because he just doesn't know....

But to end on a positive note, he said he was blown away by how well she was doing overall. He laughed as Maggie talked and played with the huge stuffed dinosaur he keeps in his office. He said he never expected Maggie to do so well...not in a million years. Thank you, Lord.