Skip to main content

The Truth

I've been reluctant to post lately because I don't think my thoughts are what most people would expect. I'd rather write nothing at all than to write something that was cheerfully unauthentic.

First of all, I'm thrilled that the surgery and recovery have gone picture perfect thus far. Miracle! We are grateful for the daily blessings we have received. The success and excitement over the past months have overshadowed much of our heartache. But as the delivery approaches, Matt and I are reminded that all our "best case scenarios" aren't a cure for spina bifida. The defect on Maggie's back has been closed but the damage is still there. We hope the fetal surgery will lessen her difficulties, but she will still have significant challenges.  On Tuesday, we will finally meet our little miracle, and our hearts will be overjoyed.  But I've gone through this before, and I'll never forget the sadness, grief, and concern that are ever present. It fades over time, but then there are moments even now that feel like a punch in the gut. Like when we went to the park last week and a boy said, "Look at him! He doesn't know how to walk." Davey automatically slumped to the ground in defeat.  It stinks to have a child with special needs sometimes...a lot of times!  There, I said it!

It took a long time after Davey was born to adjust to our new reality. I'm hoping the second time around will be a bit smoother. We know a lot about the medical aspects of spina bifida, but more importantly, we understand the great blessings that spina bifida/Davey bring to our family.

To sum it up, as great as the surgery and bed rest have gone, we are feeling a heavy weight. Luckily, we have family and friends who "get it".  They don't wave their pompoms and say how great everything is.  Instead, they let me be blah when I feel like being blah and hand me a tissue when my pregnancy tears flow freely.  I was incredibly embarrassed last week when I went with my mom and sister to get pedicures.  We were relaxing in our massage chairs making plans for this coming week.  I started to bawl like a baby, and the tears didn't stop! 

At our last ultrasound, the tech showed us Maggie's long and lush hair.  So fun!  Kate had long black hair when she was born.  Hope the 3D images prove to be correct.

P.S.  Should I capitalize "spina bifida" when I write or not?  I see it both ways.  Come on English people.  


  1. My heart goes out to you Millie. I have thought many times how after all you have already been through these past months you are going to have a baby. Having a baby is hard enough work as it is, but a baby with special needs? It just adds to the stress because the stress is accompanied by greif and sadness and surgeries and catheters and stares and challenges. I am anxious to meet sweet little Maggie and pray that you will have the strength and health to get through all that is coming at you during the next few days (and years) to come. Maggie and Davey are so lucky to have each other and even more lucky to have amazing parents. Love you!!!

  2. It's never easy, is it? Thanks for keepin' it real. We love you and you're certainly in our prayers. Good luck!!

  3. Well you look gorgeous in the picture at the bottom, Millie dear. You are very eloquent and I don't think anyone thinks your battles are even 1 percent over. We are just so happy you have made it this far.

    You cry all the Mommy tears you need to cry. It is OK to have all those feelings - even self pity every once in awhile. I have plenty of all kinds of feelings and I am just a crabby old lady with no one but myself to take care of.

    Praying for your family...I can't believe it is Tuesday!! Love, Lillian and family

  4. You would be weird if you didn't cry at least once a day. You are a pro at this c-section thing... and this time you get to be awake! (yippee.) Just, you know, stand up straight and all that. I am so looking forward to you running down the street, Maggie's hair blowing in the wind in her stroller.

  5. We will be thinking of you tomorrow and you will be in our prayers. Having cared for special needs children for the past 20 years, Davey and Maggie are so fortunate to have the parents they do. You will assist them to reach their full potential. How blessed they are.
    And it is okay to grandma always said a tears were a good thing and made you feel better. Our family will be praying for you, The Sawyers and Grandma Zee Wornica.

  6. I tried posting yesterday from my phone, but it kept deleting. Hopefully you won't end up with 10 different comments from me. :) But what I wanted to say is that I can't believe the delivery is right around the corner! Somehow I had mixed up the dates. But I know you'll do awesome. You are such an amazing mother, and I know you will have support from above. Don't feel bad for seeing things as they really are or for getting worried or concerned once in a while. Those worries can drive you to be better & stronger than you already are. And you can know that you are loved & prayed for!!! I hope all goes as smoothly as it possibly can tomorrow and in the next few months especially!

  7. Thanks everyone for your kind comments. It's overwhelming and makes me blush! It's amazing what a nights rest with Tylenol PM will do for my spirits. You are each dear to me. Stop it with all the mushy stuff but keep up the prayers. I wouldn't have life any other way :)

  8. Millie, I am always amazed at what you can do! Thanks for being a great example of dealing with adversity . . . and I always appreciate your candidness about life. :) Good luck tomorrow. We will be praying for you.

  9. You are proof of being able to do hard things!! I love that you are real! You are real! Some things are just that... real and hard! We love you and hope that all goes well tomorrow! Prayers for sure!!!! You are a great example to so many!!!!

  10. Hey Millie! I'm doing a reread of all these great posts. Your authenticity makes me weep, and I understand a little more what it's like to have a child with special medical needs.

    Since you asked about spina bifida, I looked it up for you (love that dictionary!) and you are absolutely correct. It's lowercase.

    Thinking of you! Tell Kate hi, if she remembers her old teacher. :)

  11. This comment has been removed by a blog administrator.


Post a Comment

Popular posts from this blog

Building a Utah Valley Parade of Home

Our home is complete (mostly), and we are thrilled!  It makes my heart flutter every time we pull up. This home is the fulfillment of a dream, full of beauty and accommodation.  Davey zooms up and down the ramps with freedom.  We all have our "favorite parts" of the home, and I can't narrow mine down to one.

The Parade of Homes is happening now, and every day I get questions from friends, family and strangers asking about the parade process and where we purchased things.  I'll answer some of them on the blog.  Keep in mind, this is just our experience.  I'm sure it is different for everyone.

Why did we build a parade home?  ·Some of the subcontractors offered a discount price because their products or work would be featured.  It doesn’t necessarily mean it is cheaper to build a parade home, but it is possible to get more for your money.  For example, appliances.  We wouldn’t normally buy Bosch appliances, but with parade discounts the fancier appliances were the …

At The Moment

Josie was reluctant to go to school today.  Friday was her "worstest day ever" of kindergarten.  According to her account, nobody would play with her at recess.  "I would ask different girls but they said they wanted to play with somebody else."  Then on the bus ride home, a girl kept pulling her pigtails, sang a mean song making fun of her and yanked her backpack.  I asked Josie how she reacted.  Her response, "I just sat in the corner."   When Matt heard the story he said, "Nobody puts Josie in a corner."  Just like Patrick Swayze.  I think it's easier to say goodbye to a daughter being wheeled into an operating room than watch her venture into the great unknown of kindergarten.

Speaking of surgery, we are still in limbo for Maggie's surgery...ETV-CVF.  We are scheduled for this Thursday, but I'll meet with the neurosurgeon on Wednesday and reevaluate whether or not we should proceed.  We don't know what to do!  This little Ma…

Cross-eyed Cuteness

Written by Matt.

We've had lots of appointments this week.

Thursday:  Millie and Maggie went to the Primary Children's in Riverton for an ultrasound on the kidneys and brain for Maggie.  Everything looked good. 
Friday:  Maggie's first follow up since her shunt surgery.  To us, she seems to be doing quite well except for her eyes crossing.  But as soon as the neurosurgeons saw Maggie, they said she needed to get an MRI.  He felt that it was urgent enough to do the scan that same day, but Millie was too sick to stay at the hospital and was lucky to drive home without crashing.  If you’ve never heard Millie crow up,  you’re missing out (it’s a mix between coughing and throwing up).  And we did an ultrasound on Davey's kidneys that day.  
Saturday:  The MRI.  Millie was still too sick to go to the hospital, so just Maggie and I went.  Maggie was charming as usual even on the required empty stomach and made instant friends with all the nurses and technicians.  I stayed wi…