Being a special needs mom | Personal

With June's first birthday approaching, I wanted to share a little bit what it has been like to be mom to a child with extra needs. Don't worry, her birthday post is coming in just a few days! 

This post is intended to be educational for those who might want to learn. I don't intend to belittle or insult anyone. :) Remember, just a year ago, I was also inexperienced in this topic. Additionally, this a post is not meant to make you feel sorry for us. Yes, there is a huge learning curve, but we are happy to handle every part of June's care.

I've learned that people have extremely limited knowledge about people with special needs. Before June, I had almost no understanding of the difficulties of daily life. Medical equipment, diagnoses, various specialty doctors, and complicated terminology are just a few things I've been schooled on since June was born.

People are afraid of things that are different. Having a child with difficulties and some physical markers that make her stand out should make me more open to others, right? Nope. I am still uncomfortable around adults and children in wheelchairs. I don't know what to say to them. I feel nervous that I'll make them uncomfortable. It's okay to be honest about this. It is inevitable that people will feel uncomfortable around June as she gets older. As her mom, it is my job to allay their fears in dealing with my child with special needs.

One area where resources are lacking is the availability of toys for babies and children with developmental disabilities. Progress is being made, but I still believe there is much to be desired in this area. Fortunately, we have specialists and therapists who help June maximize the use of the toys we already have.

One burden I wouldn't wish on anyone is the paperwork. There is SO MUCH paperwork. It's like doing the equivalent of federal and state taxes. Every week. I call doctors daily. Medical billing offices are always reaching out to us about insurance cards, balances due, and payment plans. If I had a 3 wishes from a genie, one of them would be to have a June secretary. (The first and second would be to take away June's troubles and to move to Disney World.) 

Being the mom of a special needs kiddo is extremely isolating. My friends are so sweet. They try to understand. They are supportive. Our families are AMAZING and provide help whenever needed. But there is a piece to this puzzle I can't quite make them understand. There is a sorrow and a joy involved in raising June. Many dreams I once had for my children are gone and it is up to us as her parents to create new dreams especially for her.

For moms of special needs kids, we might need a little bit more grace. We may cancel on playdates and family functions regularly due to sensitive issues. I never thought I'd be that mom. "Press on and drag the kid along" was my plan. Well, my plans have changed and I have one very sweet little princess to thank for that.

June_06.jpg

Being June's Mom | Month 11 Update

I'm writing to you from 4:30 am. I've been up since 2 and had to move to the couch because little Miss wouldn't go back to sleep. Well, now she is sleeping soundly next to me and I'm having a hard time getting comfortable enough to close my eyes. This is a perfect picture of our daily life. I've hit that sweet spot of motherhood, the one that is so full of simultaneous joy and sorrow that my baby is getting so big. She is bursting out of some of her 12 month clothes and she definitely doesn't want to lay down - like, ever again. She wants to be up and see the world. I am so proud of her.

Eleven months ago, the single most difficult day of my life came and went. June was here and we had NO CLUE how much our lives would change. It is quite difficult to get anything done when I'm taking care of her.  She requires hands on care 24/7. Cal is an excellent partner in this and steps in when I really need to focus on what I'm doing for work or my business. He is also so generous when it comes to giving me time for myself. I know not every husband is as involved and I do not take it for granted.

 Sweet girl asleep on the dock with her Pop Pop! 

Sweet girl asleep on the dock with her Pop Pop! 

This month included a mini getaway to a friend's river house in North Carolina. We didn't take June in the water because she was sick with a sinus infection. Plus, rivers creep me out just a little and I felt weird about putting my baby in that water. Haha! Didn't stop Cal and I from getting in, though. We greatly enjoyed the away time and little miss enjoyed not having to ride in a car seat for 3 days.   

She HATES the car seat. I can count on one hand the number of calm drives we had this month. I'm pretty sure it's the straps she doesn't like. But we can always bet the farm that as soon as we take her out, she is smiling. 

June has been excelling in her physical therapy.  She has two sessions a month where her PT works with her (us) to learn new ways to strengthen her baby muscles. She is trying so very hard to sit up on her own and I know she will get there. We try not to think too much about milestones and I have come to be okay with her doing things in her own time, or not at all.

Another thing that happened this month, our little friend, Hunter, went home to be with the Lord. He fought cancer his entire life and was just a week and a half shy of his first birthday. Having spent time in the hospital with Hunter and his mom, Megan, we were greatly devastated to hear of his passing. I hate to think about how it feels to lose the thing most precious to you. Please, hug your children. Don't take them for granted. I know that's easy to say and we can all agree with it, but even I let the days go by sometime without truly pausing to thank God for my sweet girl. 

We are in the homestretch of June's first year of life. I appreciate everyone following along with her journey. This time next month, I will be sharing all about her small, family birthday party. It will be a tearful event, for sure. I hear there is a gold polka dot tutu involved! 

 This was the only phone pic I have of her and I semi-matching today. I love my little sidekick.

This was the only phone pic I have of her and I semi-matching today. I love my little sidekick.

As always, thank you for reading. We appreciate your prayers for little June. 

About our feeding tube

A couple of people have asked some questions about June's NG tube. Before she had one, I had NO CLUE how they worked and found myself asking a million questions. So, to give a brief overview of the matter, I thought I'd share for those who are curious. Enjoy because I don't share about June's medical stuff very often. 

IMG_1443.PNG

Why does June have a feeding tube? June does pretty much what June wants and homegirl was not consuming enough calories to stay hydrated. Dehydration is one of the most dangerous situations for a baby and we decided it would be safer and easier to guarantee getting liquids in her tummy. 

Does June still eat on her own? Yes! June takes some of her milk by bottle. If she feels like it, she'll drink about half of her dosage.

How long will June have her tube? Well, probably always. Or at least for the foreseeable future. We are doing therapy to increase her stamina as she eats. But she won't have the NG tube for much longer. One day, she will have surgery to have a G-tube placed. I hear from other parents and her nurses that it is an easier situation once the healing is done. Surgery is minimally invasive and should be a breeze. (But you can still pray for her safety!)

What goes in June's tube? Well, right now, she only takes formula through the NG tube. She eats soft baby foods by mouth and loves them. Once she gets the G-tube, she will be able to take puréed things, but the idea is to move her to eating solids by mouth.  

Why do I like it? Before the tube, I was spending half of my waking hours trying to feed her. I was slowly going insane and the tube gave me my life back. Not kidding. Ask my husband. 

What don't I like about it? It feels like the feedings go on forever. If she doesn't take any of her bottle, that just adds time to the drip. Also, taping the tube to her poor little cheek eats me up. Imagine a piece of tape on your skin for MONTHS. I can tell it irritates her sometimes. But no more tape once she has the G-tube. 

I hope this helps quell some of your questions, even if you were afraid to ask. I mean, I am pretty scary when it comes to people nosing around about my girl. Haha! I am thankful we have this option because without it, I am confident June would not be here.  

Being June's Mom | Month 10 Update

It feels so good to reach ten months of little June. I think back to a year ago, when we had one of our worst ultrasound appointments, and everything seemed impossible. I literally could not even fathom what it would be like to have my baby make it to this age.

(If you're just reading my June posts for the first time, this is a really bad place to start. Go to the beginning and work your way from the start of my pregnancy to now. (June and Pregnancy) Maybe I need to make an organized list...I'm not sure how easy it would be to scroll to the oldest post and work forward. Good luck. Ha!)

IMG_1462.JPG

I have grown a lot as a mom in the last month. I FINALLY feel like I can do dishes, keep up with laundry, feed my baby, and watch her, all while I'm home alone.  Up until recently, I was relying on the times my mom would come over and help with those things. I must say, it feels good to figure this part out and have some balance again. And please know, I am not saying my house is clean all the time. Right now, it resembles the aftermath of a tornado with several piles of clean clothes thrown in. 

We just celebrated Father's Day. I'm thankful for Cal and the amazing dad he is for June. She definitely deserves a good, strong set of parents...and he holds up his end of the deal. He is kind, caring, supportive, patient. He doesn't complain when June and I hog the entire bed. I could not do all this without him. Becoming a parent to a baby with extra needs never, ever crossed my mind. Like, in a thousand years, I would not have thought this would be my life. Fortunately, Cal has taken my hand so we can face this together.

IMG_1491.JPG

I hesitated to even share this post. I deleted it several times. I NEVER want anyone to think I'm complaining about June, taking her for granted, or seeking an internet pity party. Those things are dishonoring to God and my family.

I don't know what it's like to struggle to get pregnant. I don't know what it's like to have a miscarriage. But I do know what it's like to see the dozens upon dozens of healthy babies scroll through my newsfeed and know that will not be our experience. I am thankful for June. She has made me better. Her limitations make her even more precious to me. But there is a part of me, the selfish part, that wishes she would be able to go to ballet classes one day, to go to school and make friends, to go to the prom, to get in trouble with her besties, to get married. June doesn't want those things. I do. June won't miss those things. I will. What's important to June is that her daddy and I are here for her. And I can't fault people for being proud of their little ones. I share my girl because I'm proud of her and they are merely doing the same.

So, just as you probably shouldn't ask young couples when they're going to start poppin' out some kids, you might not want to ask when I'm having another. It also applies to asking about June's specific medical issues. I am grateful for the privacy most people have given us. You may think it's strange we don't share more openly about her condition...sorry, not sorry. If I can be frank, it's none of anyone's business. It is still bizarre to me that I am able to share as openly as I do. I much rather be a hermit and keep these thoughts inside my head, but I share to educate. I share to help other people understand what is and what is not okay to say. And in the same fashion as my pregnancy blog posts, I've probably scared some of you from even talking to me in real life. 

People have asked how they can pray for us. You can pray for my everyday strength. You can pray for June to remain as healthy as possible. You can also pray for the kindly people on the other end of the phone when I call about medical bills. They always seem to not know what hit them. ;)

In all seriousness, each day is more amazing and more difficult than the one before. I tell Juney about 400 times a week that she is my best friend. We were meant to be together and the greatest honor of my entire life is being able to care for her. I know Cal would say the same.

Being June's Mom | 9 Month Update

I'm holding a sleeping June as I write this. She is snoring the cutest little snore ever. I look down at her sweet little face and can't believe how much I love her.  

The past month has been incredibly busy and somewhat difficult. Just two days after my last post, June went to see her GI doctor and we ended up staying 2 nights at CHKD, where they placed a NG tube. Long story short, June needs a little help getting enough calories for her to keep gaining weight. We don't really mind the tube and neither does she. I never thought I'd be playing nurse, but here I am, almost a feeding tube expert after just one month. 

Then, on a sunny Saturday afternoon, Cal and I had to call 911 when a scary situation popped up. We both stayed extremely calm, and honestly, the only thing I could think about as I talked to the dispatcher was "the neighbors will see the whole emergency parade pull up to our house." Haha! In all seriousness, I was mainly focused on June and prayed that she would be okay. I thought for a moment she would not make it to my very first Mother's Day. Fortunately, she was alright and I was only scared for a couple of minutes. After 2 more nights at CHKD, we came home and she has been peachy keen ever since. 

Aside from hospitals and doctors, June has been living the good life. She smiles constantly and gets waaaay too may snuggles. She is the definition of spoiled, but I am not bothered by it at all. She brightens our days and is the best baby.  

I am starting to think about her first birthday and her party, but then I find myself in denial and move onto something else. Time has whizzed by faster than I ever thought possible. We continue to pray for June and her future troubles, bit we are also learning to enjoy each and every moment. I will admit that I struggle to savor the tough days, but I remind myself that even bad days are better than the alternative we were given. She is my little sunshine and I could not imagine her being any cuter or sweeter, even when she's screaming like a banshee. ;)

I want to remind you to look around and be thankful for the things you have, not mourn the things you don't. I have spent a huge chunk of her life being sad about "what might have been" for our sweet girl, but I was robbing myself of her beauty. It was a disservice to my daughter to wish she were different. I'm not sure how I learned that lesson so quickly, but I'm glad I did!

IMG_1043.JPG