Sometimes one little comment or image or thought will pop up and send me on this journey of introspection that stuns even me… so if you’re feeling like joining me, read on…

Something one of my sisters wrote got me thinking - about how much we parents love our kids and think they are so beautiful and want to share them with the world. It was funny, but I realized I’m NOT that way about my newborns - I laugh as I write that because I think a lot of people didn’t lay eyes on Emiline until the spring AFTER she was born because we kept her home for the first couple months and then it was RSV/flu season and we kept her home and by the time we let her out I think she was crawling. When we do take our newborns out we keep them practically under lock and key and if anyone wants to see them we just refer them to the blog for pictures because no one is allowed to breath near our newborns. Okay, I’m exaggerating… slightly…

I was the opposite when Bennett was born. I went on bedrest at 10 weeks and our ward had just split (our church congregation) because of growth and combined with a different ward - so half our friends went one way, the other half went another and we were in a new ward with 50% or more not having a clue who I was because I was at home on bedrest and Kit was the single dad at church with the two little ones. People heard of me but did not know me, I was just the lady on bedrest that they were bringing meals to. Sometimes, because I felt physically okay, I wondered if these kind strangers coming to help us wondered if I was some sort of hypochondriac. Shouldn’t I at least look sick? or at least look pregnant? Because I really didn’t look pregnant, even the week I moved into the hospital. It was such a bizarre, surreal experience…

So I had none of the pregnancy related fun. No shopping, no registering (okay, not that I needed anymore baby stuff, right?) and no shower (though my incredible friends blessed me with such a shower after Bennett came home) and no waddling around and no complaining about heartburn and no maternity clothes because at 22 weeks you really don’t need maternity clothes yet. I felt like a fraud, the wanna be pregnant lady. Especially after our miscarriage in July, which we didn’t tell a lot of people about at the time. Then to get pregnant in August and be on bedrest in October? I wondered if I was imagining the whole thing and if I was one of those crazy women that talked herself into thinking she was really pregnant?

Here I was the month Bennett was born:

And to compare, here I am the month Emy was born:

So, I’m pregnant at home on bedrest and I don’t even look pregnant. I’m the crazy fraud pregnant lady. Then I move to the hospital, and deliver right away, and of course everyone is stunned because hello? I’ve been at home on bedrest for 3 months. I had every intention of staying pregnant for another three months. I gave all new meaning to the word “denial” - I brought it to levels not yet known to humankind. I was NOT having this baby four months early. They knocked me out, I wake up in a drug induced stupor, I barely look different (except for those lovely staples) but suddenly my baby is gone and I’ve not even seen him. Apparently I did see him, they claim I saw him, but they wheeled me to the NICU on a bed (no clue how they fit that in there!) and I had my handy dandy morphine pump with me so I have no recollection of seeing Bennett. I think they did that as a token trip so when he died they could tell me I had seen him alive.

But I wake up the next day and drag my sorry self down to see him and realize he’s here, he’s alive, he’s probably not going to stick around for long, and no one else had seen him. My mother and a sister both came to see him, my brother-in-law and a friend that helped with a blessing. It was January so the NICU was in serious lock down and we could only allow six people to go see him. And if he died? Then we were the sole witnesses of his life. And that thought was eating me alive.

I don’t know why I wanted others to see him, I don’t know what sort of validation I was seeking. But when the NICU was opened up to visitors I was grateful for every single friend that accompanied me to sit by his bed, talk with me while I nursed, drive with me at night, take pictures for me and take a turn holding him. Every single person that met him let me feel he was a little bit more real. That sounds odd, doesn’t it? As if he wasn’t real?

It felt like a dream, as if Bennett was a dream. And I couldn’t believe it was happening but if someone from the outside world came in, if a friend or family member could come see him, then they gave me a link to the world that was racing ahead while we were locked in the life or death drama of the NICU. I cannot tell you how it helped my heart when a friend would see him and tell another friend - to hear someone else speak of Bennett, to say his name and mention his eyes or his itty bitty fingers. To show people his diapers that we carried around - still carry around, this tiny piece of proof that he was real. To know I wasn’t just imagining this entire thing.

I remember many people didn’t seem to know if they should offer congratulations or condolences but what I most remember are the congrats. My brother-in-law that brought us flowers and balloons and a card, celebrating our new baby. If he wasn’t going to be around for long, I was going to be grateful for every single day he stayed. He worked so hard to be born, so hard, and we needed to celebrate. So those flowers, the balloons, the package my cousin sent - she went shopping and got us preemie clothes and when she told the sales clerk Bennett’s size the clerk asked why she was sending a present? She said it would only hurt for me to receive the package after the baby died. I was so thankful that my cousin sent that gift, knowing Bennett would not wear the clothes for many long months. It was her statement of faith that Bennett was going to make it and that just his arrival was worth celebrating…

I had to pump around the clock to keep up my milk supply and we would go straight from the NICU to church and friends watching our kids would meet us there. I would have to visit the mothers’ lounge at some point to pump and it, of course, felt very awkward to sit there with woman all nursing their newborns while I’m pumping. One time when I came in and sat down and started someone made a joke about, “Don’t you usually bring the baby with you to the nursing lounge?” I didn’t know her (remember, new ward so few people knew me) and I just laughed but another person there did know me and her eyes got HUGE. The poor woman that commented realized who I was I guess just from the other woman’s expression, and clearly felt horrible because she immediately said, “You’re Heidi!! How is Bennett doing?” I just laughed and answered but wow, it hurt… to be reminded that I was missing my child.

Right after he was born a friend brought me a dinner and normally when you get a meal after a newborn you show off the newborn and everyone says, “Oohh, aahhh, he’s so beautiful,” and you smile and you’re proud. I had no newborn at home, it was as if nothing had changed in the week before I moved to the hospital to the week I came home. Two weeks went by and my life went rocketing off in another direction but it looked like nothing had changed. All I had were those pictures so I asked if she would like to see him? She said yes, and I showed her some of these:

Kit said her eyes widened suddenly, she did a fine job keeping her composure from my view but Kit said she was noticeably stunned. All I saw was my beautiful son. We took so many pictures those first days and weeks, every single day I took dozens of picture and video because I kept hearing in my head, “This may be all you have, these pictures may be your only ones, he may not be here tomorrow.” I guess we’ve still not gotten over that initial urgency of taking pictures?

I know it’s terrifying and disturbing, I had some friends pregnant while Bennett was in the NICU and some waited until he was closer to home before they were able to see him and others that asked to not see him until he was out of the hospital. I know it was a sacrifice for every single person to walk into that NICU and remove jewelry and scrub and scrub and then sit with me next to this tiny, tiny boy. I watched every single one of them shed tears when they first saw him. Every single one… and I would try to reassure them and comfort them and say, “It’s okay, he’s doing so well now!” and I was grateful they came. Grateful they were willing to be a witness to the miracle with me, so thankful they were willing to share the pain, so humbled they were there for us, there for Bennett.

As we’ve received the letters people wrote to Bennett, each one has been a gift. From people we know very well, from friends we picked up more recently that shared the journey, from family and friends near and far. Every single one has been this tangible witness for us, and each one gives us another piece of the puzzle. Each perspective adds to our own, we treasure them all because they help us tell this story that we feel so completely inadequate at sharing. How do you share a miracle?? How do you put it into words, how do you capture something that is beyond explanation?

So, he’s home now. He’s asleep, in his little striped pajamas. And it’s safe to say that our entire ward now knows Bennett by his volume and gleeful singing at church, his speedy dashes down the hallways and of course by the glasses… He is his own witness, his own testament to the miracle. I still carry that diaper. I still share his story with other preemie parents, and when they say he gives them hope I feel humble and grateful that he’s able to do that for another family. I hear of other preemies, families that endure trials & experience different outcomes, and I am humbled by the weight of the miracle.

I know how close we came, I’ve heard the evidence, read the reports, seen the statistics. I remember the emotions of the nights we talked, discussing what we should do and feeling the crushing responsibility of making the call to aggressively treat or opt to hold and cuddle and treasure him for every possible moment he would stay… I imagined the other life, we discussed and planned for the other life - lives. 50% survival. 50% do not survive… 50% rate of severe disability among survivors. The numbers bounced around in our heads while we sat there (and I lay in bed) talking with the neonatologists. 1 in 4 chance of him having a life resembling “normal” - after the given of at least four months being tortured and then however long with medical equipment and drugs and therapy. 1 in 4 chance that someday he may somehow reach a level of life bordering on “normal.” As if there is any normal for a baby born 4 months early? We discussed all the options but we knew that 1 in 4 (the “almost normal” option) was unlikely… we already knew we were living on borrowed time, that every day I stayed pregnant was a miracle. We imagined all three lives, all three realities - losing him, keeping him while he faces a life of disability and possibly pain, or life with a micropreemie that may defy the odds and be almost okay. We allowed our minds to start down those paths as we desperately prayed to know what to do. It’s a coin toss if he survives. IF he survives we’re facing a 50/50 chance he’ll be severely impacted for life. Will he know us? Will he be aware at all? Will he be able to communicate, to talk, to laugh, to move? Will he be happy? Would we want that for ourselves? How do we make this choice for another person?? We prayed to know what Bennett wanted, prayed to know what Heavenly Father wanted, all while asserting our fervent wishes. How many nights did it become almost a chant for me, as I rested my hand on my belly willing Bennett to keep moving, make that heart keep beating, force him to stay with me for another night… “Please, stay, please, stay, please let him stay, please let him live, please, please, please, we want him so much, please let me keep this baby, please let me have my son stay…” All the while knowing how selfish it was, that it may not be what was best for Bennett. But it did not stop me from begging with all my soul for him to be allowed to stay, to be whole, to be healthy, to be with us in this life. I remember a similar late night prayer, repeated over and over as I would fall asleep feeling Emiline moving. “Please, let her be okay. Please let her be safe. Please let us get to term. Please, please, please…”

Now my late night prayer is different. Much simpler. “Thank you. Thank you, thank you, thank you for my babies. Thank you for Kit. Thank you for today, thank you for giving me another day with them, thank you for my babies… Thank you for this family. Please help me be worthy of them.”

The discussions we had, the plans we made as we explored our possible realities? The tiny caskets we viewed when it looked like Bennett would not stay, the talk about how we tell the other kids, the pondering where we would bury him… the long, long, talks about what this would mean for our family size. Would we ever be able to mend enough to try for another baby? We both said no. I hate to even write that, but we both said in the broken hearted despair of those talks that we would be done - we could not bear to face the heartache of another pregnancy if we were to lose him. Wow, the idea of life without Emy hurts beyond description. We were that scared. That lost. It sickens me to remember even imagining that reality, I feel ill considering life without Bennett or the thought that we may have lost the joy of both Bennett and Emy. I can feel my mind stopping the thoughts, as if I’ve hit a brick wall that my heart is incapable of passing. And I appreciate that. The way my mind can somehow protect my heart just a bit from the pain…

I wonder, as the years pass, will this fade? The late night pondering and the thoughts that float through and the sudden rush of fear or horror or joy or wonder or absolute awe when we realize this is reality? We woke up from the nightmare but we still remember it and I wonder if that will fade? Do I want it to fade? Doesn’t remembering the terror better help me appreciate and understand the reality of now? It’s nights like this I have to tiptoe in and kiss each baby one more time and whisper I love them and see for myself that they are all here, all four are here. All four miracles.

This is our 6th bi-annual visit with Leffler (we’ve gone every May & November since Bennett came home, though he had many more visits with the retinal specialist and while in the NICU with Leffler - we won’t count those.)

I can’t find where I wrote his last prescription but I thought it was -10 and -7 or so. It’s now -11 and -7.50 so not a huge difference (hooray!) but he’s still as blind as a dingbat. (No offense to any dingbats.) We’ll be setting up an appointment with the retinal foundation to find out what his acuity is and hopefully it’s better than a year ago (20/55 and 20/60) and if so then we don’t care so much about the -11. So long as he can see with glasses, we are grateful.

I am so frustrated! I feel like the list of people/companies we can trust is dwindling on a daily basis. We just tossed our Fisher Price doctor kit blood pressure cuff after reading at my parents’ place the Consumer Report article on lead content in toys - the doctor kit cuff had levels of lead they did not deem safe, though OF COURSE Fisher Price says it’s safe by the government standards. Right, because I’m a HUGE believer in the ethical standards of the government and how they bend over backwards to protect my children from danger. Really. Can you feel my sincerity?

Here is another blog link to it.

From what I’ve read lead is used in plastics to make colors bright, so I’m now skeptical of all brightly colored plastics around here…

Needless to say this is causing me to pursue alternatives to plastics, and Fisher Price, though I love our Little People sets (see post below!) but I don’t know if I can trust them? I’ve not heard any recalls yet but is it just a matter of time? I have a 15 month old that loves to chew on them and I would like her to keep her brain cells in tact, thank you very much.

And not that this is related exactly, but my faith in the medical community as a group isn’t exactly at record high levels. Individual medical doctors and medical type we do trust, on a case by case basis. But as a whole? Nope. Not when there are too many influences all throwing in their opinions to things, from pharmaceutical companies to legislators to malpractice attorneys and insurance companies - all having far more sway over the “guidelines” provided by the various medical organizations than we do. Yes, we need to trust our doctors to some degree but the best doctors ADMIT they do not know it all and join us on the journey to find out what is best for our child. They don’t claim to know it all and they certainly don’t advice us to do whatever is standard simply because it’s easiest for them. We make our doctors work. And the good ones are happy to go to the effort to learn along with us. And if not, we fire them.

I do trust people, there are people and companies we feel good about, it’s impossible to go through life doubting everything and researching everything ourselves - we just don’t have the time. But we’ve also learned that it’s best to go in with a bit of skepticism and ask the questions and make the people think before they give us advice. Is this what is best for us? For our family? For our children? For everything, from what we eat and what we watch and what we play with to how closely we space the kids’ immunizations and what treatment we pursue for therapy or medical conditions…

I think it’s worth the effort. And now we will go see if we can find a lead free dollhouse for our little girl.

Here is a recall list and among other things? Boppy pillow covers, crystal beads sold to make baby bracelets (we have one) and the little animals from Walmart (we already tossed.) Argh…

Edit: I think we found an alternative, not that the Fisher Price dollhouse has been recalled (yet) but we found a company I trust more for sentimental reasons (growing up in Germany) and their dollhouse is not made in China, and it’s very cute:

And I don’t think we can find it locally (Target website says they’re out) but it’s available on-line if anyone else needs one, here’s a site AND it’s the same price! But we have to pay shipping… oh, well, it’s worth it to me.

Brianna, I love the idea of making our own. We’re also going to check out the local craft stores and see what we can find with wood doll houses, then we could let the kids help pick colors and decorate. I think they would enjoy it and feel more ownership if they help create it… and I like the idea of it being not plastic, even if we do the dolls plastic. We could even sew little blankets and pillows for beds. That could be a GREAT project to help with sewing, painting, sanding, woodworking? I love that idea…

We got quite a chuckle out of this, I don’t know what you can see but Bennett and Emy were playing with our Little People Nativity Set and Christopher had kindly brought in every animal he deemed appropriate. I don’t know which I enjoyed more - the cow on the roof, that Emy deliberately kicked Joseph out so the angel could come visit, or the “Wild Turkey of Bethlehem.”

So, talked with Bennett’s doctor and he says get the inserts or brace or whatever and see if it helps. He said Scottish Rite will not see us without us seeing the neurologist first to confirm CP (not sure that’s entirely accurate) but he said they won’t take his credentials for the CP diagnosis - but Children’s Medical Center WILL take his CP diagnosis - however, he said treatment will remain the same with or without the diagnosis (I’m not sure if that’s accurate, either?) and that’s just a label and he’s not comfortable giving it at this time.

And we are all really not comfortable with seeing a neurologist at this point because an MRI on Bennett would require probably some steel straps, enough sedatives to knock out an elephant, and some very strong medical staff. And it would show us the damage and I would rather us not have to see that for now. Or forever. I don’t want to see proof of the trauma, I think I’m usually pretty good about not living in denial but this is something I don’t want, I don’t want to see the evidence and I don’t want Bennett to see it because I fear in some way that could plant a seed of doubt for him and I never, ever want him to question his abilities because of this. I don’t know if that is rational or not, but I just fear what we would find and fear it would be an impediment in some way for Bennett - obviously the testing or not would not remove or create what we may see, it’s there either way, but this way we can go on believing that regardless of what’s there Bennett is going to live his life with great gusto and reach his full potential.

ARGH. If it’s CP then let’s just admit it, if it’s not CP then let’s eliminate it from the list of options! But Kit thinks the doc just wants to give Bennett some more time and see if he outgrows this? Which we’ve discussed and think isn’t likely but he’s hoping he’ll see some improvements and maybe it’s not CP.

We order the shoes with the PT, we’re booking an appointment at Children’s with their ortho/OT/PT group and we’ll see how this goes… we’ll also talk more with his doc in January at his 3 year visit.

Edit: WOW, I called Children’s and yesterday they told us their next available is March and that’s for any visit, it’s longer for a “complex” visit (to diagnosis and assess) and I called today and the guy came back on the line after checking the calendar and said he could not believe it but something’s on our side because he got us in DECEMBER 20TH! Of THIS year. At 10:15, even a great time to miss traffic. I’m so grateful…

Moira’s list is:

A very, very nice baby doll set. With a toy lollipop. (I have no idea what she means by “very, very nice” and she HAS like four baby dolls but I think Emy stole most of them.)

Baby doll bed. (She likes to “make” beds for her dolls in whatever she can find like shoeboxes or buckets, it’s very cute but Emy often snatches the doll out of said bed and hysteria ensues… maybe a bed that hangs from the ceiling so Aunt Emy can’t kidnap the dolls anymore? )

Red & pink stickers.

A book to read to her baby doll.

A baby ice cream cone and a baby ice cream.

Chocolate covered strawberries.

A baby doll cake & candle.

It’s breakfast time, I think she’s hungry…

She said she has more -

a baby doll scooter (I think she says “baby” but really means “Moira”)

Okay, this is what Kit and I think she would enjoy even more than another baby doll:

And here are details but it says 2 to 4 years so I’m wondering if it’s too young for her? But I think she and Emy would both love it, and fight over it. And it’s not $200 like some dollhouses! Ouch! We’re trying to be good this year and save for a house but even if we were NOT be frugal I can’t see spending that much on a doll house… I want that $200 for a real house!

The accessories I can only find on the Fisher Price site, which stinks.

But the original house only has Mom, Dad & a baby and clearly we need a lot more family members in that place for it to feel like our home.

Any wonderful doll house suggestions?? That cost less than a real house?

So far it’s:
To build something cool with Dad and me.
To have a great time with my family!

(He’s been hemming and hawing for awhile now, and asked, “I get three presents, right?” and this is what he’s come up with…)

I pushed, and he said, “I really don’t care what I get.
Wait, he’s got something - a pack of “double Oreos” - he snitched that from his cousin Meagan’s list!

Kit’s addition was sculpting clay, the kids’ type since Christopher has been asking to make sculptures. He does love art supplies…

We did write up a more traditional Christmas wish list and I sent it out to my parents and siblings, but it was stuff I thought they would enjoy - bug things, mini-baking stuff like tart pans, etc. Things I know they like but may not think of and thanks to my mother’s AMAZING shopping skills she’s found this incredible collection of bug books, stickers, tiny loaf and tart pans, candy making stuff. They are going to be so excited and the day after Christmas I’m collecting stuff for us to have a baking day with their new things. But I think between her and Dad (what he got Kit) they wiped out a lot of our wish list! So now I’m asking the kids for ideas, I’ll post Moira’s once the list stops growing!

Emy’s sad little bum is actually still scarred from her last bout of terrible thrushy rash. I was changing her tonight and let her air out afterwards and she was thrilled to run around naked. She decided to hop on the IKEA rocking horse for a ride and I commented, “Oh, it’s Lady Godiva!” Which launched us sharing that legend with Christopher, and you can read about it, too.

See how modest she managed to be?

We finally imported the rest of the Kansas pictures including Thanksgiving, attempts at Christmas pictures, Jenny & Aurora, on the roof with Grandpa hanging lights, and many more adventures…

I’m wondering at this point who is going to give themselves a concussion first, Bennett or Emiline. The head banging is getting out of control - Ben does it only when angry, and only on tile or a wall. Emy does it when tired, angry, frustrated, told no, overwhelmed, any excuse she starts smacking her head on things. They are both walking around sporting a constant rainbow bruise on their heads… they can go from funniest, cutest, sweetest, most darling toddlers ever to wailing banshees in a split second.

Mo’s whining has reached olympic levels. I think her pitch could qualify as torture under some sort of international convention laws. She’s also taking to deny with great vigor anything she’s done wrong - knocking Bennett flat being the most common crime. And let’s not forget the ear piercing shrieking she does just prior to knocking him flat, generally when he’s trying to grab something she’s deemed is hers. She’s normally such a sweetheart, and so fun to have around, but this whining is aging me..

Christopher newest hobby is tattling. He gives us a running commentary on any wrong he witnesses, or suspects… we try to respond by asking, “Is anyone on fire?” and he remembers we don’t want to hear tattling unless it’s serious and someone needs help. He’s prompt to apologize. He is amazingly helpful to have around when we need help in that area but wow… the tattling at this stage feels non-stop.

Okay, I feel better. Perspective, need perspective. Despite the raging headache and ringing ears… they are all alive, they are healthy, they are young and we will help them out grow these stages as soon as humanly possible, we will be firm but kind (Sound of Music anyone?) and we will stick to our boundaries and I will consider wearing earplugs during the day?

I think it’s the coinciding of challenging stages all at once that’s causing me to come unglued -their developmental stages (because I know they will outgrow this, they will, they are great kids and this is a stage and we will guide them OUT of these stages) and coming back from vacation throwing them off and daylight savings and the dark evenings. It’s the perfect conglomeration of factors leading to this utter hurricane of insanity at our place.

And I bet this will pale in comparison to what it’s going to be like when I’m dealing with four teenagers all at once, right? I should really just step back and laugh and enjoy this stage because when they are teenagers?? And I’m dealing with all sorts of drama and hormones and fights over who gets the car and dating and college applications and broken hearts? These are going to be the peaceful days I look back on with fondness, when they were all little and problems were more easily solved and they all adore me (even if I’m not feeling too affectionate back) and this isn’t going to kill any of us. Deep breathing…

Now off to stop Emy from banging her head on the back door, her way of asking to be let out to play…

One of our goals for raising our children is to help them become critical thinkers and astute observers. Then they can come up with their own conclusions.

I found this web page with a long and interesting list of subtle manipulations that are being used on us all the time. Yes, I’m trying to raise a family of skeptics, and I appreciate anyone or anything that tries to raise my awareness.

Let me know what you think of it. Remember, Crisco is gluten-free!

Christopher owes me a trip to Europe, we had tickets and were all set to fly over for our first anniversary trip (our belated honeymoon) and my sister’s wedding and I landed on bedrest the Saturday before we flew… we got a refund since my doctor wrote a letter saying I absolutely was not going anywhere, but still. We missed our trip so I told Christopher he owes me Europe.

It now appears Bennett owes me an engagement ring. Pre-toilet lock, he had a tendency to flush things down our toilet and at one point we found evidence that he had flushed my jewelry (some was on floor of bathroom, my box was empty) but I couldn’t figure out what was missing. Kit found more jewelry IN THE TOILET this morning (not sure how he found it after all this time??) and my engagement ring and one of my wedding bands is no where to be found. I checked the mantle (where I usually put it when I take it off) and searched the boxes from the jeweler that my ring and earrings came in… we cannot find it. It would seem that Bennett flushed my engagement ring and wedding band down the toilet. At least I still have one of the bands… and pictures of the ring from my wedding. That’s something, right? But I’m so SAD. It was custom made, it’s my birth stone and there’s no way we can replace it even if we wanted to - you can’t replace something like that…

So Bennett, you owe me, child! And it better be something good because I loved my ring… I was going to let the three months of bedrest slide, I wasn’t going to give you a hard time about that - or my laptop! And the $600+ we spent on repairing the damage you did! I can let that go! (Okay, so the fact that I’m bringing it up doesn’t count as letting it go.) But my ring?? You flushed my ring?? You owe me for that.

Before Christopher’s a daddy he needs to get the priesthood, learn to do dishes, and be a good example for his kids.

Some people think Satan is stronger than Heavenly Father, but they’re wrong. Satan only has the power to trick you.

Satan yells, but the Spirit has peace.

Did we switch cuddlers tonight?