our sweet Isaiah Jane…

Aside from the fact that she was larger at birth, IJ has always been the runt. She’s smaller than her sister and slower to reach milestones. Although I’m anxious to see her start moving more like Honor, I love the extra cuddles she gives while her sister is off exploring. Over the last few weeks, though, we’ve become concerned with Isaiah Jane’s eyes. They’re starting to cross more instead and more, even sticking for several seconds at a time on occasion. Her right eye is significantly worse than her left. She also bobs her head up and down slowly while looking at people, as if she’s trying to focus.

On Friday night, I returned home from work to a girl who couldn’t go two minutes without her sweet eyes crossing. I decided to call a pediatric opthalmologist first thing Monday morning. We already have a call out to the Early Intervention people (more on that later), but I figured we should start with an eye doctor. Thankfully, they had an appointment open Monday afternoon. Over the weekend, her eyes seemed to be getting worse by the hour.

When the time came, my mom came over to hold down the fort. Chris cut out of a meeting early to join me at the doctor’s office. He wore her in the Ergo most of the time. People kept smiling at the bundle on his chest, with little feet sticking out. This was the first time the girls have ever been separated. We felt this silly obligation to tell everyone, “She’s missing her other half…she’s a twin!”

There were several bright lights, a few eye drops, and a couple of long waits. She did an amazing job. She nursed a little bit, talked a little bit, and whimpered a little bit while she snuggled against my chest.

The prognosis? Both good and bad. Her eyesight is close to normal, meaning she’s not a candidate for glasses…yet. Her eye-crossing is intermittent instead of constant, meaning she’s not a candidate for surgery…yet. We were instructed to patch her good eye for her an hour each day and follow up in two months. She hinted that Isaiah Jane is probably going to be diagnosed with strabismus down the road. I also got the impression that if she’s going to need either of the two above-mentioned interventions, that there’s not much we can do to stop it.

This was discouraging to me, because I felt like I was being told to watch my daughter deteriorate and just keep an eye on her (pun absolutely intended). I know this isn’t life-threatening, and that there are families out there struggling with a lot worse. But I also know if you don’t use it, you lose it. It’s what I tell my patients every day. She will most likely lose her vision in one eye if things don’t improve. But because they’re not bad enough yet, I’m just supposed to wait?

We’ve got a few more consults to check off the list before I take a deep breath. Isaiah Jane performed her head bob very nicely for the opthalmologist, but I got a different reaction than I anticipated. She stopped talking and just stared at IJ, calling it “interesting” over and over. She said that it did not appear to be in any way related to Isaiah Jane’s eyes, and asked if we’d been referred to a neurologist. I said that we had not, but don’t you know I made an appointment with one on the way home. She’ll see someone this week. I guess it’s good to rule out the scary stuff first, and work backwards from there.

I’ve also recently been introduced to the idea of Vision Therapy. A friend talked me through her journey with her sweet daughter, and she gave me a few contacts in the area (I’m full of eye puns today). One of the local developmental optometrists offers free screenings on kids under 12 months, so I’m going to start there. Vision Therapy is very very very expensive and not covered by insurance, but we’ll see what the doctor recommends. I agree that interventions like surgery should be a last resort, and I’m interested to hear about the program.

Lastly, I’ve been toying with the idea of Early Intervention. Thanks to a lot of you, I’ve discovered the program and its benefits in the last few months. I’m not too keen on hearing about all of the delays my kids have, based on charts and statistics. I am, however, absolutely open to the idea of a free assessment and another opinion. I’m not going to put my head in the sand. I know my daughter should be showing greater muscle control and efforts with mobility than she is right now. I placed a call last week, and I expect hear from an intake specialist any day now.

In the meantime, we will do the patching and the praying and the waiting and the snuggling. They only had boy patches at the eye doctor’s, so IJ is rocking some sweet trains and bugs and who knows what else. She’s only fussed with it one time. For the most part, she seems to not even notice.

I’ve felt the worry creeping up for months now, and the other night I finally let it out and had a good cry. As a parent, I want the best for my children. As a parent, I feel the weight of the possibility that my kids’ lives may not turn out the way I anticipated. As a mother, that weight seems to take on the form of guilt.

There I was in the nursery, blubbering on about all the what-ifs. What if I had pushed harder with the PA last time we were there for a well visit? What if I’d seen a doctor instead of a PA? What if Isaiah Jane gets sick from all of these upcoming consults and appointments, after I’ve been trying to keep her healthy all winter? What if she has to fight for things her whole life, things the rest of us take for granted? All of those nagging thoughts that occasionally pop into my head seemed to just come pouring out of my mouth. It wasn’t just about IJ’s eyes. I ran down the list of all of the things that seem to be “wrong” with all of my kids.

And then my knight in shining armor stepped in. He grabbed my face, kissed it (probably to shut me up), and spoke truth to my heart. Our children are perfect, he told me. They were created exactly as they were supposed to be. If there is an eye issue or a size issue or any other issue – then it’s there for a reason. We will work through it. Our children are perfect. And that’s that.

36 thoughts on “our sweet Isaiah Jane…”

  1. You are doing exactly the right thing with your little girl, by having her checked out right away. I have constant stabismus in my left eye and almost no vision in it. My eye didn’t start turning until I was about 2 1/2 and while I did get glasses very early on, my dad was too embarrassed to have a kid with an eye patch and he wouldn’t spend money on surgery. I ended up being mercilessly teased all the way through school and I will never have vision in my left eye again, even if I had surgery to straighten it. Things could have been very different for me, if my mom had her way, and my dad hadn’t been so awful about it. But you’re not my dad. You and Chris are taking Isaiah Jane to the right kinds of doctors. You are using the patch as the doctor prescribed. Sure, there may be glasses, but who doesn’t wear glasses or contacts these days. And there may be surgery, but it has come a long, long way and is quite safe. It’s going to be okay, because you and your husband are strong parents who put your sweet children first!

    1. I second this perspective. My husband had (has) strabismus and needed surgery at 6 years old. He was also teased in school for having to wear an eyepatch before and after his surgery. The positive (besides the fact that his sight is intact and he’s incredibly handsome?), he was inspired by the gentle way the doctor’s dealt with him and is now in medical school. I’ll be thinking about you guys and praying for little IJ.

  2. And because I didn’t write enough in my last comment, I also feel weird going out with just one of our twins. I feel like I should wear a sign that says that whichever gal I have is half of my precious duo.

  3. You definitely caught it early and good for you in noticing! Both my boys have to patch 2 hours daily (we caught it at 2 1/2 years and 4 years old). Both boys do daily vision therapy exercises at home and have shown a lot of improvement. One has strabismus and one has amblyopia. Since you’ve caught it early on I’m sure any vision therapy would be different than what my older kids are doing. Right now the patching you’re doing is strengthening the eye muscle. I would like to suggest something that you can do this early, if you don’t mind? grab an object or toy and put it behind her ear and bring it forward (along the side of her head) until she “catches” it with her eye. This will help train her eye that is crossing to the inside to work on moving to the outside which will strengthen the muscle. At first it will be hard (you will have to keep her head straight), but this is what I do under the direction of our ophthalmologist and it is working for us!
    I’m sorry this was so long! I hope I didn’t overstep my bounds with all this…

    1. Thank you thank you thank you!

      I’ve been curious about Vision Therapy and hopeful that I might stumble upon exercises I can do at home. I really appreciate this!

  4. i lol’d at your “she’s a twin” comment. I used to always say to everyone when they commented on Benjamin’s size, big or small, ” well he was 7 weeks early”. Just reminded me a bit of what i’ll do when I have twins. Anywho, she is perfect and exactly how God intended for her to be, praying all goes well with future visits and you get some comforting news.

  5. As I read this I’m sitting here pumping, crying, and worrying about my Isaiah’s weight-gain. Thanks for the reminder that they are perfect! We will be thinking of you guys these next few weeks and months.

    1. Everyone can’t be 75% for height and weight, and be in 12-18mos clothing a year early… Some of us just make babies that help take up the rear of the growth chart.

      Take heart! Your little boy seems JUST FINE to me.

  6. Those beautiful babies are perfection in every sense of the word. No matter what happens, they are perfect and wonderful and so very blessed to have you as their mama. Praying for IJ and you, my dear friend.

  7. Sweet friend, I am praying for sweet Isaiah Jane. That one day looking back this will just be a part of her great story that is going to unfold before your eyes. I am praying that the Lord places the right people before your paths that will be able to help IJ for free. My heart is grateful that the Lord has placed you as her mom, one who cares enough to cover your sweet angel in prayer and hold her tight and make sure she gets the help she needs. Love you sweet friend and I think Isaiah Jane totally rocks the eye patch :-)

    xoxo

  8. I can’t imagine the stress of this, plus the low muscle tone/mobility you mentioned – I’d have a little/mild panic attack too.

    BUT our God can do anything! I believe that he can heal her fully! IJ is so young and she was given to you and Chris because you are the perfect parents for her. It’s wonderful that you have access to all the resources that are out there, and that you have an army supporting you and praying for you.

    Hugs!!

  9. I would encourage you, no matter what the diagnosis turns out to be, to avoid believing that something “bad” has happened or that there is something “wrong” with your daughters. As a person with a disability (cerebral palsy), this is the strongest perception that I encounter from others – that there is something missing from my life, that there is something wrong with me. I am not a mother yet so I can’t imagine what being in your position would be like, but I urge you to avoid this pitfall. It’s so easy to do. You do not need to cry, to worry. Your daughters are just as human as they were yesterday. As they grow up, your family must be the place where they are considered whole people rather than “different.” Home must be the safest place and you MUST get rid of the idea that they “did not turn out” the way you “thought.” You should not be afraid of disability! The only thing inherently wrong with, and the hardest part of being, disabled is soceity’s stereotypes.

  10. Rachel! Ijust discovered we have a mutual friend on FB (Amy Weiler)… and I saw the tag to your blog– I’m so sorry you are going through this and its always hard to ward off the mommy guilt no matter what the situation… I’m so glad you have a wonderful loving husband to help you in those moments along with a loving Father to calm the storms of our lives. I’ll be in prayer for you all!

  11. I’m sorry you and your baby have to go through this but your husband is so right. I don’t think there is any more for us to say because he has said it all already.

  12. I think she is precious and you are doing a WONDERFUL job. I also know two of my friends (now) that as children had crossed eyes. One wore a patch, and one had corrective surgery. And they are both perfect and you would never know. (I saw your pics of her on IG and was wondering when you would post about it). I think you are being very proactive and doing teh right things.

    p.s. I do the EXACT same things. We don’t take my twins out separately, but when we do, and one comments about him/her, I immediately want to blurt out “THEY ARE A TWIN – THEY AREN’T HERE!!!!!” Why? I have no idea, lol

  13. Before I got to the end I was thinking exactly what your wonderful husband said to you- Your kids are perfect! Remember? God knit your babies together in your womb exactly as He saw fit.

    However, I know it sucks and is scary but trust in the Lord because He’s got your back. Your daughter may have a little tougher time in life (or not, depending on what it turns out to be) but even if she does- God gave her you guys as parents to guide her, give her confidence, love her unconditionally. God never promised any of us an easy life. He DID promise to never leave or forsake us. Count on that for your little girl. And you!

    I have no eye-puns otherwise I would’ve used them. :/ Anyway, praying for you guys and hope to hear good news soon :)!

  14. Good on you guys for catching this so soon! My mother had the same condition when she was young, and you should see the glasses my grandparents picked out for her to treat it… truly awful! Fifty years later, she’s the only person in my family who DOESN’T wear glasses. Best of luck with your little one :)

  15. I went through Vision Therapy! I have been recently diagnosed with convergence insufficiency (my eyes turn in when resting). Something I had my entire life but all my optometrists brushed off. It wasn’t until I was 22 and my eye doctor pointed me to a specialist. Load and behold, the migraines and learning disabilities that I had my entire life were due to my eyes! I did 6 months of therapy, which entitled weekly office visits and daily 30 minute home exercises. Towards the end I threw in the towel and thought it didn’t work and I just wasted all my money. But one day it clicked – my migraines are gone, I can read SO fast and my vision is better!

    I DO believe it works and it is the best alternative to surgery and prism glasses. I can go in so much more about it, but I wish Vision Therapy was around when I was a child. Please contact me if you have any questions!

  16. Hello,
    I just wanted to comment that along with the Early childhood intervention specialist’s assessment if your little one needs additional intervention she would be eligible for services from a vision teacher/trainer, free of charge. This is a federally mandated program that is available for children birth- through age 21. Ask the person that will be conducting the assessment for this type of information. Feel free to message me if you need additional info. Good luck, and by the way your babies are beautiful!

  17. rach, we went thru all of this with Zac. i know it is scary but i will pray for clear direction for you and Chris! As for the Vision therapy, we spent about $10,000 for Zac and Lucas…it helped greatly. So call me if you have questions about that. Love following your blog and updates!
    robin

  18. Hi Rachel, I just wanted you to know how much I admire your courage and strength as a young mother with such a big family! I often pop in here and am so impressed by your honesty and candidness throughout life’s ups and downs. You are blessed to have a supportive partner by your side! I will keep your family in my prayers.

    Sending love and blessings your way,

    Kelly

  19. I hope the baby is ok. This post is in stark contrast to one a few months ago, however, when the STEP-son had to wait until his face was nearly swollen shut before he was taken to the doctor. Early intervention should be considered whenever a child is obviously in need of medical attention, even if they aren’t your blood. Something to think about.

    1. I appreciate this perspective, but I hope you’ll allow me to address your points.

      Isaiah Jane has been showing signs for concern for weeks/months. We only took her in to have those issues addressed this past week, after it appeared she would not outgrow them. It’s not like I rushed her to the doctor the moment her eyes first crossed. But if you read my post, you’d see that.

      We waited less than two days to get medical attention for Lucas, and we ONLY sought the attention BECAUSE his face was swollen. We never would have taken him otherwise. If poison ivy is a reason for a doctor’s visit, then I am absolutely guilty of neglect and will continue to be, step-son or otherwise. But if you read my post, you’d see that.

      Early Intervention is the name of a government-funded program specifically created to address developmental delays, and to help parents get the information and resources they need to seek help for related issues up to age three.

      I hope this helps! Trying my best to stay positive and receptive to comments like this, but I’m having a hard time not taking offense to the idea that I play favorites as a mother. I only wish commenters would do a little research before leaving comments like this.

      Let me know if I can explain anything further.

  20. oh rachael! nobody should ever judge another mama’s decisions, regardless of whether the child is her own flesh&blood or not. i am sure you’re doing your best and i honestly commend you for doing the right thing with both lucas and IJ. don’t let anonymous posters get under your skin. i saw your tweet about it and i had to come and comment because it’s so easy for something small to become that niggling little thought at the back of our heads…
    but i think you’re doing the very best you can with both your children and your stepchildren and NOBODY should ever judge or comment on that without knowing everything. you’re fantastic at being a mother. and i’m praying that IJ (and her twin, SHE IS A TWIN! [gosh that made me giggle]) grows up always knowing you are doing the best you can/know how to for her and her siblings.
    ps. am i the only one who thinks cross-eyed-ness is kind of adorable? my friend’s pug was cross-eyed and blind but it was a sweet little doggy. not that IJ should remain cross-eyed or anything, but she looks adorable no matter what. :D

  21. Step-“mothers” ALWAYS play favorites. ALWAYS. They just can’t see it, until their own kids end up with a step-parent.

    1. I would absolutely love to email with you about this. I have never been a stepmom before, nor have I had a step-parent. I have (what I perceive to be) a great relationship with my stepsons and their mother, but after all of these comments I can’t help but think I’m missing something. I’d love to learn anything I can. Thanks!

  22. hi Rachel — I just wanted to let you know that when I was a baby my right-eye would not seem to stay still. my parents were told i was a candidate for surgery or that they could try patching it. they chose to patch it. i am now 32 and the only time my eye is noticeable is if i try to look waaay up {my right eye will only look partially up} or if i have to focus for a long time (like taking a photo — sometimes it will slightly wander.. but only i notice it).
    Keep up with the patch and the praying.
    Lisa

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