Today was one of those days. You know, a rough one. A "fighting back the tears" kind of day.
It started this morning when I dropped off the kids at day care. Julia got a new contact yesterday and so today was the first day in a week that she had to patch. So I put the patch on as we got out of the car (no use in putting it on before - she will just rip it off) and I carried her in. I handed her over to Barb and she didn't blink an eye. No tears, no reaching for mommy, nothing. As I walked away I realized she wasn't fussing because she couldn't see me leave. She didn't know I was gone. The patch covered up her window to the world and she was content - safe and secure in Barb's arms (but not my arms). And while this is a blessing - it is hard to leave a crying baby in the morning - it also made me very sad.
You see, every once in awhile the reality of our situation hits me in the gut. Usually I focus on the great life we have, how blessed we are, on how things could be so much worse. But today - I couldn't see that. I grieved. I wept for my beautiful baby who spends half her day in a blurry world.
I went to work and focused on my students. It was a normal day until about 11 o'clock when I got a text from Barb. "Julia has been through 6 patches. Do you have any suggestions?" All I could tell her was that I'm sorry. She didn't sign up for patches and contacts when she started watching my son 2 years ago. I suggested distraction and arm restraints. Thankfully, she is a saint and said she would just keep putting them on - she didn't want the arm restraints.
And again, it hit me - this is real. It is happening. My little girl is at day care with a patch.
So I pick up the kids. Best part of the day. Jed runs to me crying out "mommy!" And Julia toddles over as fast as her chunky legs will carry her. Barb hands me a contact case and tells me her lens fell out at 12:30. Two hours before patch time was even up. Before I could even think, the words were out of my mouth. "I can't take this for 7 more years." Barb was supportive and loving (which is why my kids love it there).
And for the third time - my chest sunk in and my heart dropped to the floor. I am tired. Tired of contacts, patches, searching with flashlights, checking her eye every 5 seconds and trips to the eye doctor. I didn't sign up for this. I was drafted against my will.
But I'll do it. For my beautiful Julia, I'll do it. I may cry and scream and yell, but I'll do it. Because in the end - it is her. It is all about her. And she is worth it.
I think we are all entitled to have one of these days every now and then. I still do and your right it's a punch to the gut every time. I'm sorry that wave of stress and reality of it all hit you. But like waves do, it will roll in and roll back out. Just keep swimming, we are right here along with you... use us for support! ;)
ReplyDeleteYou're damn right she is worth it. (scuse my language...) And, you're entitled to be pissed off and angry and upset because those feelings are because she is worth it. If you didn't love her so much and she wasn't so worth it, none of this would be hard because you wouldn't be doing it!! I know this means nothing now, but IT.WILL.GET.EASIER! From one imom to another, this is not just me saying this without really understanding. I promise I remember the exact weekend that our life became somewhat manageable because Anderson started keeping the patch on for at least 10 minutes at a time instead of 10 seconds. He had been patching for almost a year when that happened and I know that seems far away for you, but my point is that it is coming! It will get easier! Hang in there and this will be worth it!!
ReplyDeleteSo I am reading your blog for the first time (I saw it on Facebook page little foureyes), and I'm sitting here crying because, wow, someone knows exactly how the past three years of my life has bee. Finally, you wrote exactly what I ( try hard to hide) but feel.
ReplyDeleteMy daughter was born with congenital cataracts in both eye and had them removed at four weeks. She later developed glaucoma and just had surgery to put a drain tube in. She has been under anesthesia close to fifty times in her short three years of life. Needless to say we have been through hell and back. But it slowly gets better! I know how you feel, so sorry and helpless for them. I have those days too where you just want to cry all day and wonder what went wrong for either of you to deserve this. But you are right, we have to stay focused on the great things and family we do have. It could be worse but that sure as hell doesn't mean what we are going through is any easier. Stay strong, you are not alone. I am going to follow your blog as I feel like you are finally someone who gets how hard and heartbreaking this journey is, but yes so worth it. Thank you
Oh by the way, we had the same horrible experience with my daughters contacts. They never stayed in and either rolled behind her eyes or out on the floor. We finally switched to glasses at 11 months and it has made a world do a difference. I know your daughter only has one contact but I bet they could do no script in the good eye. We had no problem with her keeping them on, it took about one week for her to get used to them!
ReplyDeleteI so wish we could switch to glasses but being unilateral it really isn't the best for her vision. Our doc would rather put in an IOL than do glasses. Thanks for posting - as much as I wish no other mom had to go through this, I love hearing stories of other imom's that are fighting the fight!
DeleteSometimes these feelings still get me from time to time. I wish I knew an easy way to fix this condition. You are doing the right/hard thing. It sucks even on a "good" day. Take one day at a time. Try to forget years and focus on hours or even minutes depending on the day. It helps me if I don't think about how long we have left. We win this fight for vision one day/minute at a time. Sorry you are going through the patch battle.
ReplyDeleteHello Laura,
ReplyDeleteI have read your very insightful responses on the Aphakic board and clicked on the link for your BlogSpot. This post epitomizes how I feel on many days (I can't take this 7 more years!). My daughter, Ava is almost 17 months old and very feisty. Our patching hours have decreased since about 13 months old. We were getting 5-6 hours a day and now it ranges from 3-4 if we are lucky. Ava will go through 10+ patches on a day (if it is a bad day). The majority of our time is spent distracting her, which is difficult because I also have a 2.5 year old and I am in graduate school.
The physicality of patching on the parent is rarely talked about. It exhausts me! I had an auto accident when she was 8.5 months in utero and have run myself into the ground holding her, stooping, distracting doing what I can to lengthen the patch time. We found her cataract, not the doctors (this seems to be common) and it was a series of eight trips to Miami (11 hours each way) during the first few months. Eventually, when I had a moment to myself, I realized I couldn’t move my neck to the left (trauma from the accident but I was never afforded time to worry about me). The added stress of “not knowing” what was going on and mourning the idea of having a “normal” course of care for her happened for me right after surgery for her lensectomy and stalk removal.
Her lens slipped off (and out of the eye--and was consumed or degraded by the time the flashlight yielded results that we have been through 16 lenses in a year). I think her eye is growing and the BC seems a better fit now and as of the past couple of months there has been less slippage and no losses. I too, am constantly looking to see if the lens is on her eye. It is slipping less frequently so that is a small relief. But, the patching has gotten harder. I try to be militant, knowing every day matters, but sometimes I am very disappointed with the results. The stress that the physical and emotional toll all this has taken on my body and marriage has been traumatic to where some days I wonder if I have PTSD. But, like you, I know that I have to suck it up most days and deal with it. Ava is a love and I have to do the best I can so I will have peace of mind (regardless of eventually acuity outcomes, I know I have tried) when she is older. You are not alone! Thank you for your posts.
Thanks for your comments. This eye thing is so hard and it is wonderful knowing there are other mom's out there that understand. Ava is worth the battle!
DeleteHang in there Laura!! I admire you in so many ways!! You are wonderful woman, and mom!! You can do this!! The Lord only gives you what he knows you can handle... And this my friend, may not be essy now, but in the long run you know it is all worth it!! I have said so many prayers for you and your beautiful family, and I will continue to do so...God Bless!!!
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