I was recently asked by a family member to write a post detailing my experience of moving from “Holland”  to “Italy” after Charlotte’s birth. But the truth is, I can’t do that. I can’t write that post because I am not, and probably never will be, living in Italy.

It’s more like I am now raising our “Italian” daughter in Holland. Holland is our home, and as the essay says, They’ve landed in Holland and there you must stay.

When Grayson was a few months old, I was thrown into the world of special needs parenting. Unfortunately, when I was thrown into that world, there wasn’t a whole lot of guidance from the medical community. We were sent to specialist after specialist, some who were no help at all, and some who provided huge pieces of the diagnostic puzzle. I relied on Google, and the hours Grayson slept so I could read and research his symptoms and try to piece together my own diagnosis of my baby who just wasn’t right. Because I felt like I had to figure so much of this world out on my own, or make an effort to make connections with people who could guide me, I really feel a sense of ownership for life as it is today. While I’m certainly not saying I did it all on my own, because that couldn’t be farther from the truth, I am proud of the many hours I have spent doing research,
making connections, and working to give Grayson the best life possible.

We started therapy when Grayson was 4 months old. I loved therapy, because it felt like we were trying to fix things, not just hand over a copay in exchange  for a crop of new questions, like we did at every doctors appointment. But therapy didn’t fix much; it gave us goals and skills to work on, but progress was so slow and new issues that arose always outnumbered the amount of progress gained. Any semblance of a life in Italy dissipated as the months went on and Grayson’s needs became more complex.

So I’ve made my home in Holland. I’ve learned the language of medically complex families, my schedule revolves around doctors appointments, Grayson’s school and activities that he is able to participate in. While every waking moment is no longer focused on figuring out what was wrong with my baby and trying to make him better, the task of making him comfortable and content still occupies a lot of my thoughts and time. Over time, I’ve grown used to this life, this place. Sometimes it’s not comfortable, or pleasant, but it’s home.

And then there’s my little “Italian”, my healthy child. My precious little daughter will also grow up in Holland- a place where things aren’t always fair, and where she will undoubtedly have to make sacrifices because of her brother. She will grow up with a mother who will do anything to help her be successful, but who also has the perspective that so much of what the world places importance on just doesn’t matter. I can already see understanding and concern in Charlotte’s eyes; at 6 months old, she doesn’t know what Grayson’s retching, vomiting and seizing means, but witnessing it worries her. She loves her brother and  loves watching him, and one of my biggest prayers is that Grayson lives long enough for Charlotte to really know and remember him.

When I’m doing things just for Charlotte, “Italian” things, it literally feels foreign. Forms with lines for medical history and current medications are left blank, days pass and milestones are met without a parade of therapists in the house, and there are no tubes to contend with. While it’s easier, and certainly more ideal, it’s foreign, and I feel out of place in that world.

Some of the most challenging parts of this life are the almost daily decisions about “normal” activities, and if they are plausible for our family. We spent all day Saturday away from home, shopping for clothes for family pictures and then the rest of the day with the kids’ cousins and grandparents. It was a wonderful family day, but Grayson was sound asleep by the time we got home at 5:00 so we put him straight to bed. Then he had a bad seizure Sunday morning. Was the seizure a result of him being too tired and overstimulated on Saturday? Possibly. Was it worth it? I’m not sure. Our family on Ryan’s side is going to the beach this week; originally I was planning on taking the kids for a night but I changed my mind. I’m afraid it would be too hot and too much change in routine for both Grayson and Charlotte.

I want so much for my children to get out in the world and do things- normal things- but for Grayson, there’s always a price to pay. And while I want these experiences, I have to remember they are mostly for my benefit, not his. Grayson is content (prefers) to be at home or school, surrounded what is comfortable and familiar. He likes his routine, his music, and his early bedtime. He doesn’t care about going to the beach, seeing the latest movie, or doing anything other than what he did the day before, or the day before that. He likes what is predictable, because his body and future are not.

Right now, today, I cling to and embrace our little life in Holland. It’s given me so many good things- perspective, empathy, friends, and the ability to count each day with Grayson as a precious gift.

Parenting Grayson this summer has been really hard- emotionally. We celebrated when we hit August 1 because we had made it through a whole month without a hospital stay- our first hospital free month since December! So the past month Grayson has been stable- he’s had several seizures, still vomits a lot, but no real emergencies or scares. That part has been nice.

What’s been hard is that he never truly bounced back from his illness in late April. The seizure he had that day lasted 45+ minutes and his fever was really high. I don’t know what lasting impact that had on his body and brain, but he really hasn’t been the same since. I haven’t written about it much because it’s just so painful- it truly felt like my Grayson was slipping away. He wouldn’t make eye contact and wouldn’t respond to his name. My mom says she felt like he was totally in his own world and wasn’t even recognizing people he knows.

I know miracles happen every day, and I would never doubt that God could heal Grayson, either completely or in small ways. What I had started to doubt was that he would. It just seemed like Grayson was regressing quickly, and we were going to have to accept it.

Then we started Grayson on a new medication (the one that is super expensive and insurance has yet to approve). About two weeks ago and 30 days of the medication, he started coming back. He’s definitely engaging more, propping himself up in a semi-sitting position, and trying hard to communicate with us. I’ve said a million times how much music and singing connects with him; well, this weekend, he started singing along with one of his favorite songs, “Down by the Bay.” Watch the video and listen closely- you can definitely tell he’s mimicking and you may even be able to make out a few of the words.

I’m truly counting this as a miracle. Oh happy day!

I guess an upside of having a kiddo who didn’t meet milestones is a unique amazement and appreciation for each one that is met by my healthy kiddo.

So the summer blogging rut continues…maybe one of these days I’ll be inspired to write a real post again, but today is just a show and tell about our weekend.

We spent the weekend at the ranch with part of our North Carolina family. My grandmother, aunt, cousin and her little girl flew from Charlotte on Friday and they went home today. We had a really good time, but when I got home I realized I barely took any pictures- ugh! I am especially disappointed I didn’t get any pictures of my grandmother with the kids, since this was her first time meeting Charlotte.

We brought along Grayson’s nurse, which was great- she is so good with him and was a huge help all weekend. Grayson did have a seizure, but it was only a few minutes and the rest of the time he seemed to enjoy being outside, swinging, and going on walks. He slept really well at night and took several good naps.

And Charlotte discovered the deliciousness of her Daddy’ waffles…

Ryan left Sunday for a coaching clinic, and our nurse, the kids and me stayed until Monday. On our way home, those of us left stopped for lunch. Two diaper blowouts (both changed in a tiny airplane sized bathroom with no changing table), one temporarily lost car keys, Veggie Tales serenading the restaurant the whole time, and lots of cracker crumbs on the floor later, I’m sure the waitresses were glad to see us go! (Sidenote: I have a child who eats crackers!)

I love these people so much!

Grayson had an appointment with a new GI doctor yesterday. I like our current GI, but have wanted to get a second opinion on Grayson’s issues for awhile now. He still throws up 2-3 times/day and gags, wretches, and chokes on his saliva throughout the day. Monday he had an awful night; he had several episodes where he woke up crying in pain, vomiting and coughing. So feeling desperate, yesterday’s appointment was timely.

I had been warned to expect a long wait with this particular doctor, so I braced myself for a long afternoon with my child who has about a 3 minute tolerance for waiting rooms. I was pleasantly surprised that the wait was not much longer than any other appointment. The doctor was nice, caring, and thorough.

Grayson has been on the same formula since he got his feeding tube, so we talked about trying something else. He didn’t seem to think that was going to make much difference, but I appreciated he was willing to try. He also put him on 2 medications- zantac since G sometimes throws up blood from his throat being irritated, and also a medication to decrease his stomach secretions.

Overall it was a good appointment and I’m happy with the plan going forward. I know Ryan was disappointed he didn’t have a miracle cure for the vomiting, but there’s just not going to be one. Again, we just need to focus on making Grayson comfortable.

In related tube-feeding news, I guess little sister is now in training to manage her brother’s care. Grayson’s tubing had some air in it, so I had to re-prime it. I turned for less than 10 seconds and she scooted over to all the equipment. Sigh. Life’s about to get very interesting!

Dear Charlotte,

Happy Half Birthday baby girl! This day has definitely been bittersweet; your babyhood seems to be flying by at lightening speed and I am trying to soak up every moment and hold tight, but you are learning so much and doing so many new things that I really can’t wait to see what comes next.

The past few weeks, you have really been packing on the pounds, and have become the most delicious, squishable cuddly baby. You weight 13 pounds 7 ounces and are 25 inches long. You wear size 3 month clothes and size 2 diapers.  You still nurse every 3-4 hours but also take bottles after nursing and will usually drink about 3 ounces at a time. We’ve been introducing you to the wonderful world of food, and so far, you haven’t totally rejected anything. You consistently like bananas, but have also eaten avocado, sweet potato, butternut squash, applesauce, hummus, chicken, and cantaloupe. I truly hope you learn to love to eat good food and be an adventurous eater.

You are working hard at learning to sit independently, and I think you will have it down really soon. I don’t want to always compare you to your brother, but sitting is the skill that we waited and worked on for so long with him, and it never came. So when you hit that milestone, it’s going to be extra special.

Charlotte, you are also working on becoming mobile. You push up with your arms and back with your bottom, so you end up going backwards, but you are moving! You’ve already gotten your legs stuck under the couch several times- we need to work on figuring out how to go forward!

Your little personality is so cute. You are definitely a people person- an extroverted child of two introverts. You love to watch people and if you are doing something you will check periodically to make sure everyone in the room is paying attention to you. You love being the center of attention. This week, you started laughing- I know now if I’m feeling down all I need to do is tickle your belly and that sweet giggle will cheer me up in no time.

Sleeping is definitely getting better, but you still aren’t sleeping through the night (except for one glorious night last week where I woke up feeling SO rested but also wondered if you were still breathing since I hadn’t heard a peep from you all night). Naps are hit or miss; I’m trying to get you on some sort of a schedule, but it’s hard with all we have going on. I am a stickler for bedtime though!

Charlotte, these last 6 months have been stressful on our family to say the least, but you are a ray of sunshine in the darkness and you are my joy. I love you so much, my sweet daughter.

Love,
Mommy

Arggg, major writer’s block or something happening here. We have so much going on, but I can’t seem collect my thoughts and write them in a coherent post this week. But bullet points are always fun, right? I had some cute pictures to show, but Blogger is being dumb and not letting me upload them. And honestly, I’d rather go to bed now than try to figure out why or worry about it anymore.

• Charlotte had her 6 month appointment yesterday- she is going to be half a year old on Saturday- what?!? How did that happen? I’ll write more about her then, but I will just say that she is my joy, pure and simple. Every day I am just amazed at the skills she is learning, and how easily they are coming to her. And she eats. She EATS. And supplementing with formula is working- Charlotte is up to 13 pounds, 4 ounces and is back to the 7th percentile. Honestly, it’s been a relief to be able to feed her another way in addition to nursing. Other than watching the weight, she has no other medical or developmental concerns. It is no exaggeration to say my experience with her compared to Grayson has been night and day.

• Ever since I heard about Sophie the Giraffe, I said I would never spend that kind of money on a rubber teething toy. I just didn’t understand what all the frenzy was about. Well, I have to admit I got sucked in. Charlotte played with Sophie at a friend’s house on Friday, and after searching at two stores, $22.99 later (I did have a gift card and coupon, so really she was free right?) my little princess is now the owner of her very own Sophie. And ya’ll, she’s magic. I don’t know what it is about this rubber toy (what should be a $1.99 dog toy according to my SIL), but these babies just LOVE her.

• Ryan and I finished Season 7 of Dexter the other day and needed a new series to watch. We started watching Scandal on Hulu and we are hooked! They only have Season 2, so it took a few episodes to catch on, but it’s been fun, and a nice distraction to all the stress we are dealing with.

• Grayson has been on the medication that we think is making him laugh for a month now. He’s still having episodes of random laughter, which is both funny and really bizarre. There’s one of his Veggie Tales songs that absolutely cracks him up, but only the very beginning. My sister got it on video this afternoon. I have NO IDEA why he thinks it’s so funny. He’s weird, but I just love this little dude.

• The laughing med- our insurance has denied coverage of it twice and we are currently appealing. Just out of curiosity, I asked the pharmacy the cost per month if insurance doesn’t agree to cover it. $975 for a 30 day supply. So yeah, we are appealing. Good grief.

• Grayson has an appointment with his Physical Medicine and Rehab doctor tomorrow and a new GI doctor next week. I’m anxious for both of these because we are having issues in both areas. He has been having a lot of leg pain lately and is back to violently vomiting every day, usually more than once. Our current GI doctor, who we like, has been unable to explain or treat the vomiting, and I just want to make sure we have tried everything possible to make Grayson’s life more comfortable.

That’s all for today!

I have been trying for weeks to put Charlotte’s nursery together, but needed a chunk of a few baby-free hours to get it done. So today, my friend came over to help me arrange furniture and decorate (pictures later when it’s totally complete), and Ryan took Charlotte on her first Daddy Date.

Heading out



The play-by-play: somebody has her daddy wrapped around her finger!

Thanks for all the supportive comments and encouragement on my last few posts. I know that life will one day get easier, but right now it just feels relentless right now. And as I mentioned in the comments, I have an appointment with my doctor next week to discuss options for dealing with my anxiety. Deep breaths…

And speaking of breathing- I got a call this morning from Grayson’s pulmonologist’s nurse with his sleep study results. This was the start of the conversation:

Nurse: Good news, Grayson has improved since his last sleep study

Me: (skeptical) Really? Wow- that’s great!

Nurse: Yes, Dr. J would like to keep his oxygen order the same.

Me: Ummm…he’s not on oxygen

Nurse: Oh. (silence). Really?

SO (and let’s not even delve into why they thought G is already on oxygen) apparently Grayson needs supplemental oxygen, probably only at night. His doctor is out of town, so they are supposed to get back to me next week with the plan.

After having a mini panic attack after getting on the phone, I reached out to my Mito Mom friends whose kids are on oxygen, and they have assured me it’s no big deal. And I know they’re right- we eventually got to the point where the feeding tube is no big deal, and it will be the same with this. It’s just at first, when you add something new, it’s scary and overwhelming. And if the oxygen will make a positive difference in his sleep and energy, it’s what we need to do.

And also speaking of oxygen and breathing, I wanted to share this blog post/website I came across last week.

http://justbecausehebreathes.com/

Regardless of your position on this particular issue, I think the lesson of this family’s story can be applied to a lot of circumstances. When we try to change/don’t accept a part of our children’s life, it will have a profound impact on how they love themselves. I want my children to know that I love them “just because they breathe”. I want them to be able to be who they are, to make mistakes, and to not be perfect- and know that I love them just the same.

And I am REALLY feelin’ the love for this little girl right now- not only did she only wake up once last night, after we went on a walk, she nursed, then drank almost a full bottle, and has been sound asleep in her crib for almost an hour now. Hooray!

Our holiday weekend was…not bad, but definitely not one of my favorites. As much as I try not to be envious of those who are able to be “normal” on holidays, I am. Grayson simply cannot (and doesn’t want to) do much at all. Having two children who can do nothing for themselves makes anything out of our typical schedule just exhausting.

The morning of the 4th, we took a long walk in the neighborhood in our new double jogging stroller. I saved all the gift cards and cash we got as gifts when Charlotte was born and finally parted with them to make the purchase. Although it was really expensive, I’m so glad we bought it. The babies are really content in it, and on our first walk, fell sound asleep within minutes.

We spent the evening of the 4th with family at my SIL’s house. It was fun, and Charlotte had a line of cousins and aunties passing her around (and giving me a nice break!) but Grayson wasn’t with us and that made me sad. We left him home with his nurse- he was definitely happier being there and being able to go to bed at his normal time, but really, it just sucks and makes me angry that my almost 3 year old can’t eat a hotdog and shriek with delight with his cousins at firecrackers going off in the street.

Friday morning, we drove to the ranch. Ryan and I are storing all our crap household items and furniture in my parents’ garage, but we wanted to go through boxes and get rid of as much as we could. We spent several hours going through boxes, and filled the bed of my dad’s truck with Goodwill donations, and had bag after bag of trash. It feels good to know we own a little less- STUFF has been a cause of a lot of my anxiety lately. We just have too much, and I am ready to simplify.

Speaking of anxiety- I have it. And I think a touch of depression too. I wake up every morning both totally exhausted and panicky about all I have to do in the day. Charlotte is still waking about 3 times during the night, and it’s wearing on me. I just don’t know how people do it when their kids don’t sleep through the night month after month (oh, please don’t let that be me!). I’m also anxious about Charlotte’s weight. She has consistently fallen in the weight percentiles and is currently in the 3% for babies her age. She still loves to nurse, but obviously is not getting enough from me (she only gained 2 oz in the past month actually weighs less than Grayson did at her age- cue panic when I looked back and discovered that!). I know that the stress of my life has most likely affected my supply, so I’ve started supplementing with formula, and the pediatrician wants me to fortify it, just like we did with Grayson. She’s getting better, but still won’t take much-usually only about 2 oz at a time. As much as a would have loved to continue to EBF her, I have to do what’s going to make her grow and gain weight. And honestly, I’m ok with it. Nothing in my parenting journey has gone exactly according to plan, so I’m just rolling with it. I’m just so thankful that she still wants to nurse, and so grateful I’ve been able to have and continue to have that experience.

Grayson continues to struggle, and I’m frustrated and angry at his stupid disease. And I’m at the point where I’m envious of other special needs families, which I know is ridiculous. But I see other kids with disabilities who are able to do SO much- walk, talk, and participate in sports and activities. Grayson can’t do any of that. It’s so frustrating.

We do love that little guy to pieces though, despite his limitations. His daddy even played “catch” with him the other day- so sweet.

And despite Charlotte’s less-than-stellar weight gain, she sure loves bananas, which we introduced this weekend. This video cracks me up- she was MAD when I took her bananas away- ha!

So I continue to plug along, trying to capture and cherish the sweet moments in life with my sweet little family. And I’m praying that someday, things will get a little easier.