For the first time since March, life is "normal". Maggie is finally becoming the baby she was born to be. Her wounds have healed. We love tickling her toes, blowing zerberts on her stomach, and helping Davey give her piggy back rides. She sleeps through the night and smiles when she wakes up. Sometimes I am asked if Maggie has been "cured" because of the fetal surgery. Nope, she still has spina bifida, but for now her scars are the only indicators of spina bifida. And her cathing. And her sunset eyes. And her big head. And...okay, the list goes on. But life is still normal and having a little baby in the family is wonderful!
For the first time since April, I feel pain free. The recovery from the fetal surgery and c-section took longer than I expected, but I no longer get shooting pains. I remember laying on the couch during bed rest and reading my friends Facebook posts about running marathons. Well, that's still not going to happen. But at least I can jog up and down the stairs to grab a diaper.
Davey's our tough one right now. For those of you who know him, you'll understand my struggle. Imagine this scenario: I take him to Costco in his wheelchair. "Get used to the stares"...I prep myself before walking in the doors. Nice shoppers offer friendly smiles, and occasionally comment, "cool wheelchair!" Davey's retort is a grunt, and downward look. He is uncomfortable with the attention and shows it. Even at church with people who love him and greet him weekly, it's like pulling teeth to get knuckles or a smile from him. In all the movies, special kids in wheel chairs melt your heart with sweetness and charm. That's not our normal. Davey is adorable... with a select few, and in select settings. I long for him to feel comfortable in his skin. He no longer likes the library story time because between books, the kids are instructed to dance, wiggle their toes, jump up and down, and then sit down. I watch Davey as he observes his peers bouncing to the beat. I want to cheer him on, "Put your head up. You can dance too!" But he's in no mood for a pep talk. Matt and I lay in bed at night trying to figure out the best way to parent and guide Davey. Why can't it be like the movies? Because it's better in real life. Like on Friday, when he crawled down our street to play with his friends. He didn't ask permission, just did it all by himself. I cringed as he put a hole in his newish jeans, his hands turned black, and I envisioned a car backing up out of the driveway. But my heart swelled to see him determined and self-sufficient. He and Matt went to a Cub Scout meeting last week where they talked with 8 year olds about spina bifida and what it means to have a disability. Those cute cubs said having a disability means you can't do things. But Matt and Davey explained you just do it differently. I think it was a good experience for Davey.
Matt and I have made it big time. My cousin called last week to congratulate us on our BYU Magazine mention. I dug mine out of the trash and sure enough, on the bottom of page 74, we got a shout-out. Oh ya!
For the first time since April, I feel pain free. The recovery from the fetal surgery and c-section took longer than I expected, but I no longer get shooting pains. I remember laying on the couch during bed rest and reading my friends Facebook posts about running marathons. Well, that's still not going to happen. But at least I can jog up and down the stairs to grab a diaper.
Davey's our tough one right now. For those of you who know him, you'll understand my struggle. Imagine this scenario: I take him to Costco in his wheelchair. "Get used to the stares"...I prep myself before walking in the doors. Nice shoppers offer friendly smiles, and occasionally comment, "cool wheelchair!" Davey's retort is a grunt, and downward look. He is uncomfortable with the attention and shows it. Even at church with people who love him and greet him weekly, it's like pulling teeth to get knuckles or a smile from him. In all the movies, special kids in wheel chairs melt your heart with sweetness and charm. That's not our normal. Davey is adorable... with a select few, and in select settings. I long for him to feel comfortable in his skin. He no longer likes the library story time because between books, the kids are instructed to dance, wiggle their toes, jump up and down, and then sit down. I watch Davey as he observes his peers bouncing to the beat. I want to cheer him on, "Put your head up. You can dance too!" But he's in no mood for a pep talk. Matt and I lay in bed at night trying to figure out the best way to parent and guide Davey. Why can't it be like the movies? Because it's better in real life. Like on Friday, when he crawled down our street to play with his friends. He didn't ask permission, just did it all by himself. I cringed as he put a hole in his newish jeans, his hands turned black, and I envisioned a car backing up out of the driveway. But my heart swelled to see him determined and self-sufficient. He and Matt went to a Cub Scout meeting last week where they talked with 8 year olds about spina bifida and what it means to have a disability. Those cute cubs said having a disability means you can't do things. But Matt and Davey explained you just do it differently. I think it was a good experience for Davey.
Matt and I have made it big time. My cousin called last week to congratulate us on our BYU Magazine mention. I dug mine out of the trash and sure enough, on the bottom of page 74, we got a shout-out. Oh ya!
BYU Magazine
First snow of the season.
Millie, you will always be normal to me. ;)
ReplyDeleteThe kids look cute in their costumes. I love sad pumpkin Maggie.
If it helps at all, Natalie has two great legs and she has never liked library story time. Actually most of what you said about Davey could be said about her. Some kids are just crusty. There is only one place in the world where she is absolutely herself and that is gymnastics. You will find Davey's thing... even if it's just crawling down the street. Maybe invest in some knee pads.
Em, thanks for the laugh and perspective!
DeleteSo I just realized a few weeks ago that Jamon and Kate are in the same school class. So fun for them.
ReplyDeleteThanks for sharing your story. You are one tough mama Millie!
Every time I see you, you have a smile on your face. You are a great example to me.
Your kidos are just darling and lucky to have the best parents EVER!
Yes, they are in the same class! Your family has always been so good to us! Thanks.
DeleteMillie, I just love!!! your family. Davie is wonderful in our class. Thank you for the Honor of working with your family.
ReplyDeleteHe couldn't ask for a better teacher. Preschool is a haven for him. Yes, he cries almost everyday when I put him on the bus. But he is always happy when he gets home. Thanks for loving him, and all my kids!
DeleteDoes Davey have a bike?
ReplyDeletehttp://www.amtrykestore.org/AM-12_AM-16-AM-12_with_Bucket_Seat.html
We just filled out an order to get Maile a new one. They are donated and we have not paid a single penny for them, on condition that we donate her old one to another child when we get a new one. If Davey does not have one, he can have her old one as soon as we get her new one. It is in great condition, can be hand pedaled without the use of his legs, velcro straps to strap his feet on the foot pedals. I think he would love it! It might be a little big for him but he will grow. She got it when she was 4. The one pictured is hers but ers also has a push bar on the back that you can push if he gets tired out.
Davey got one about 18 months ago. It's very similar to the link you sent. We had it donated through an organization in Amarillo...they don't have it in Utah. It has been the best thing for him. It gives him freedom, confidence and the ability to fit in with the other neighbor kids. Thanks for thinking of us. It means so much!
DeleteYou are welcome! Probably the same organization as ours.
DeleteMillie, you don't know me. But I work with Francie Hansen. I teach 2nd grade at her school. If I remember right she said you were her niece? I can't remember. She told me about your story and gave me the link to your blog. I hope that is okay. I recently had a daughter born with hydrocephalus I think around the time that your sweet Maggie was born. My daughter Emma was born on August 7th and had a shunt placement on August 9th. She then had to have stomach surgery the same weekend as your Maggie's shunt placement for pyloric stenosis. We spent conference weekend at Primary's until she was finally able to come home. I have only read a few of your posts but I felt like I should post a comment and let you know how much my heart aches for you and also rejoices for your Maggie's toughness. Being the mother of a special needs baby is hard. You face the sadness every day that your baby isn't what you hoped and dreamed they would be. But yet you are so proud of how hard they fight and their determination. These sweet little angels go through more than they ever should. It isn't fair. But your family is beautiful and your Maggie is so sweet. She has matching shunt scars with my Emma. I would love to talk to you more. I kind of feel alone and don't have many other people to talk to that have gone through similar situations. If you don't mind, I would love to continue to read your blog. I pray for your sweet family.
ReplyDeleteTara, thank you so much for writing. It touches me that you'd take the time to empathize with me. It's so hard when our babies are just born. Because between the surgeries and worry, we are grieving. It isn't fair! I love the name Emma. I'm glad she and Maggie have matching battle wounds. I've found you on your school website, so I'm going to send you a private email and exchange info. Thank you for your prayers. As you know, they are needed, heard and make all the difference. Yep, I'm Aunt Francie's niece. She is one of my favorite people in the world. When we found out Maggie had spina bifida, some family did a fund raiser at Del Taco for us. Francie and my uncle were in the kitchen washing dishes to keep up with the demand. She also came to my house and gave it a good scrub while I was on bed rest. I can't imagine working everyday while Emma is going through so much. I'm a Realtor, so my schedule is flexible, and I've had to cut down some. I'm sure it's hard to balance everything, but somehow you do it! Much love!
DeleteTara, You don't know me, but I had to comment. I have a good friend whose little one was also born with hydrocephalus and had a shunt put in shortly after birth. Scary time, as they had no idea! Her daughter is now 9, beautiful, and "normal." Anyway, I contacted her today and told her the little bit you shared here. She said she would love to talk with you; someone who "knows," but is also a bit further along in the journey. I'll be honest. Their life has not been a walk in the park. BUT it has been filled with beauty and goodness. Let me know if you're interested in her contact info, and maybe we can go through Millie to hook you two up. (and if not, that's okay, too) Praying for your sweet Emma!
DeleteI would be so grateful for her contact information! Thank you! If I could get her email that would be wonderful. Thank goodness for the internet and its ability to connect so many people that wouldnt have been able to find each other otherwise!
DeleteTara, Millie said she sent you my info. Will you email me, and I'll pass her info along privately that way? Thanx! :)
DeleteWell, JJ thought the Cub Scout meeting with Davey was just about the coolest thing EVER! He came home telling me all the cool things Davey could do, like play TENNIS! Oh, yeah!
ReplyDeleteGlad things are going well, for the most part. And I know, without a doubt, that Davey will come around. He just has to find his niche, just like any child. (be sure to tell him how cool JJ thinks he is because he can play tennis in his wheelchair--I know Davey will appreciate it)
Angee, Davey played wheel chair tennis once and loved it! They have a league that he can start going to next year, but it's up in Salt Lake. But, if he loves it, I'll make the drive. For Christmas, I think we'll get him the special balls & racquet that they use. Davey appreciated knowing that JJ rememberd what he said. I also emailed Tara your number and email address. That way she can call you to get your friends number. That's so nice of you to make that connection. Tara sent me a link to her private blog, and her story is amazing!
DeleteHi Millie, I just found your blog via a family member. I just barely moved to Utah and have a 5 year old with Spina Bifida. I've "enjoyed" reading some of your posts and relate to so many of your sentiments. Thanks for being open and sharing. Melinda Osterhout
ReplyDeleteHi Millie, I just found your blog via a family member. I just barely moved to Utah and have a 5 year old with Spina Bifida. I've "enjoyed" reading some of your posts and relate to so many of your sentiments. Thanks for being open and sharing. Melinda Osterhout
ReplyDelete