Charlie’s Ghost

Not long before I found out I was pregnant with Charlie, a good friend of mine announced her own pregnancy. Our due dates ended up being just one month apart.

My friend delivered a healthy baby boy at thirty-seven weeks. In her hospital pictures she was still in full makeup as she held her new bundle of joy in her arms.

Charlie was born a month later via emergency c-section. Half-dead on arrival, I never held him in my arms and spent the rest of the morning alone and crying.

The differences in our experiences didn’t end there. My friend nursed her son until his first birthday. At three months he went into daycare and she went back to work. I wouldn’t dare say things were easy, but they did seem uneventful. Meanwhile, I scuttled back and forth to the hospital for endless appointments and was nursed by a yellow machine named Madela. beach 3 174

In most areas, I have accepted this unusual life that I have been handed. I know how lucky we are. My child is alive, he crawls, he eats, he laughs, he sits. We have so much.

When it comes to my friend’s child, Stephen, I’m not quite so Zen. For whatever reason, he gets to me. I mean, I love my friend and her darling son, but sometimes it’s hard for me—harder than it is around other kids. beach 3 248

Stephen goes to daycare, so he’s not the product of some hyperactive mother hell-bent on perfection. My friend is an extremely laid-back type who lets her child be who he is. Her son is what you get with the regular amount of effort: He walks, he talks, he drinks from a straw. It’s not like he’s solving quadratic equations or anything. And yet, I cannot look at a picture of him without wondering what my Charlie would be doing without the pile of medical garbage he deals with, without wondering what he would look like if he could stand on his own. Or wonder what his voice would sound like.

I can deal with a lot—I deal with insurance companies and appointments. I deal with questioning eyes and worry. I deal with state agencies and impossible decisions.

But some days, I can’t deal with Stephen. beach 3 307

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Comments

  1. Some days are so much harder than others!

  2. Katy, thank you so much for posting this! It's so good to know that we all have those moments.

    Tonight I was watching a reality tv show about multiples–a couple who had a 4 year old and wanted one more but ended up with quintuplets. The dad seems like a nice enough guy. But at one point, after being told that his son needed to wear a cranial orthosis, he made a comment to the effect of 'this on top of everything else?'

    His wife scolded him and reminded him that they were lucky to have all five babies so healthy. But that just made me want to punch him through the tv.

    As petty and immature as it is, when I hear about people with high-order multiples with all typically developing babies, I seethe with jealousy and anger. I have terrible self-righteous thoughts about how they could test the limits of nature to carry that many babies to term and all I wanted was one healthy pregnancy and baby.

    It feels good to let that out. I don't know if I have ever confessed those feelings before.

  3. Amy Genn says:

    Oh, Katy, I know what you mean!!!

    I had SO MANY of my friends pregnant at the same time as me.
    I can't go anywhere, or be on FB more than 5 minutes without being reminded what my Eli might be like right now.

    Hearing his voice and knowing his sense of humor are the hardest for me!
    I can handle a wheelchair for life…I just want to sit and have a conversation with my son!

    My heart aches. A lot.

    Big Hugs to You, CyberFriend!

    I sure hope we get to meet someday!

  4. Amy Genn says:

    I don't know if your friend Meadow will read this, but tell her

    I LOVE HER….
    and thank HER for sharing what she said! When my friend was freaking out about her son getting ear tubes….I wanted to punch something! :)

    We are not alone… I'm so thankful for the internet, so I continue to be reminded of that!

  5. I'm going to chime in here with some not so charitable thoughts of my own. My friend also talked about ear tubes and how it was a breeze. For my daughter with a metabolic disorder and CP to get ear tubes means a hospital admission, so she can be on a glucose IV, so going without food to go under sedation won't kill her or cause additional brain damage. Same for an MRI that we should get, but I haven't scheduled since I can't bear to put her in the hospital if she doesn't have to go. And yet, we have it much easier than many of you, my child walks, and will likely talk since she quite obviously has receptive language, and she is learning by leaps and bounds right now with all the intervention that I do. Certainly many people struggle with more than we do and I do count my blessings but goddammit I am still peeved. And how about those folks who do get the normal kids and then don't really give a damn, don't really invest in them, and have no clue about how hard we are working to help our special needs kids grow, and wouldn't consider putting out 1% of that effort. That also pisses me off. Thanks for letting me vent.

  6. Kara Melissa says:

    A good friend of mine delivered her son by c-section the morning my water broke. Sebastian was born three days later not breathing, having not had any intervention to get him out sooner. Intervention that he obviously needed but was not given. I too spent weeks in the hospital and pumped for three months. My friend was upset she had delivered by c-section and I had to tell her had we had that I wonder how Sebastian would be different. I recently met her son, our boys are both age two now. Both teachers, I could imagine how my boy would have talked like hers, yet I only dream about hearing his voice. It is harder with her child than my other friends because they are the same age. I can't ignore it as much as I want too. Thank you for writing such an honest post. You are not alone in such feelings.

  7. This post really moved me, Katy. We all have a Stephen. I have about 10 of them. I was in a baby play group when Little Bird was born. These weren't my friends before LB and they're really not my friends now. It's just a little too tough. But I do see their kids in the community. Worse? I see their younger siblings doing things that I'm still working so hard on with LB- or others that seem completely out of her reach.
    I loved Amy Genn's comment referencing FB posts. I know that those moms have no idea how their bragging might hurt another person so I can't really blame them, but it's still really hard to hear some of that stuff.

    I posted a link to this post, Katy!

  8. As I read your posts and watch you work with your son I am amazed at all you have learned and do on a daily basis. You have a natural mothers love that is a strong gift from God. In that way, your son is a very lucky little boy. How precious he is and how far he has come. I pray for God to give you strength so that you do not wear out from the daily work to help him be all that he can be. Love his pictures!

  9. Our birth and aftermath experiences are so similar… so I sat and cried with you reading this.

    xoxoxoxo.

  10. U understand. My situation is a bit different. My child with special needs is a twin. I don't have to look for another mother who delivered a child around the same time as I. I am that other mother and my daughter's twin brother is that other child.

  11. And I hope you don't feel the least bit guilty about that…I too live with a similiar situation.

  12. Thank you for posting this! It's nice to know that there are others who harbor these thoughts and jealousies.

    My "Stephen" is the son of a good friend of mine. Although, I must admit the child itself doesn't bother me nearly as much as his mother, my friend. We were both pregnant at the same time. She delivered a full-term healthy baby. Two weeks later I delivered 29 week twins, who were in the NICU for six and seven weeks. During those six and seven hellish weeks, my friend would constantly call stressing about the typical newborn things — was he getting enough milk? He cried for half hour, was that normal? Etc. While I was facing life and death issues with my children and discovering my son had PVL, later resulting in a CP diagnosis.

    Since our children are so close in age, she still calls stressing about real worries for her, but ones I cannot really muster up too much concern for. We're not nearly as close as we used to be, and I know it's because I can't get beyond her inability to even recognize that our parenting lives are so different.

    By the way, I love the title of your post!

    Tara

  13. Tiffany says:

    I appreciate this honest and heartfelt post. I have thoughts like this all the time and am glad I'm not alone. Just when I think that the grieving part of this experience is over and done with, something happens to make these feelings resurface. And I think it can be equally hard on my close friends with babies who are Shelby's age (and younger). They want to share their parenting joys and sorrows, but it is so hard to relate because they don't have to fight tooth and nail for developmental milestones. I just have to remind myself that parenting is difficult, no matter the situation. Thanks so much for your blog. Since I don't personally know anyone with a child like my Shelby and your Charlie, you and others out there in cyberspace help me so much!

  14. K- floortime lite mama says:

    many many hugs
    I know what you mean

  15. K- floortime lite mama says:

    Oh and he is beautiful
    FOund your blog through Dani G
    and also see we have someowne else we both like in common Barb of Therextras

  16. Ugh. I can so relate to these feelings. My cousin and I have been very close friends since we were born. We had our first child a month apart. She was the only 'friend' truly there for me during all of our uncertain days in the NICU. Now 2 years later it is so hard for me to spend time with them. I hate that I feel this way for all the reasons you posted.

    Katy- have you talked to your friend about how you feel? I sometimes think it would help but just dont if I can do it.

  17. Linking over from Dani G's blog. God, this post just guts me. I can't tell you how many Stephens that I have that I just can't be around. One of them was a work colleague who insisted on dragging me along to get a flu shot with her when we were pregnant. I could never say that this caused my daughter's autism, but I would have never gotten that shot if not for her. Needless to say, she has a healthy son.

  18. I have 4 kids, one with Autism.

    My 3 other kids are wonderfully, boringly normal.

    I know immediately if someone has a SN kid by the way they react when I say my others are wonderfully boringly normal.

    While L doesn't have the same limitations nor faces the same issues as Charlie does, I often forget how limited she is until we spend some time with some typical 7 year olds.

  19. Wow, thank you for your honesty Katy. This post really spoke to me, and gave me a good cry. There is a Stephen or two in my life, and they will always be a part of my life. I try to tuck the pain away under a cheerful smile when I am with them, but it is not easy. The mom is oblivious to it of course. It is comforting to know that others understand this sort of pain.

  20. MeghatronsMom says:

    Hugs. Thanks for the post. I feel the same way, so many Stephen's in the world for sure.

    I know it's silly, but I feel like I am the only one who gets the meanie greenies.

  21. Paulette says:

    Katy, this was such an honest and heartfelt post. I wish everyone I know could read it and understand.

  22. blogzilly says:

    You know…my saddest moments are those spent in the company of other people's 'normal' children. I hate it about myself, but it is Truth with a capital 'T'. I often wonder if, as years pass, it gets easier or harder.

  23. Hopeful Mother says:

    Yes. Thank you for putting these words out there.

    I have 2.75 yr old twin boys, one with CP/hypotonia/dev. delay and sometimes my typically-developing twin is my "Stephen" and other days, it is a child of a good friend on Facebook, whose boy was born about 3 weeks after ours.

    It is really hard not to have the "What if?" thoughts when you are around a Stephen.

  24. Wherever HE Leads We'll Go says:

    First, I love these pictures! Charlie is so adorable!

    Second, I know exactly what you mean! I was pregnant at the same time as a few other ladies and they all have typically developing children. While we were pregnant we would swap stories with each other about the ups and downs of pregnancy. When our kids were all born, I could still see them swapping stories about their kiddos, but I wasn't included anymore. OUCH! It is hard to see younger kids doing things that Emily cannot do, but it is also hard to watch those kids that are so close to her age. We are just in different worlds.

  25. From what I have observed your life as you know will be yours and theirs will be theirs. You will see the hard times they go through since their children will grow up and some will make poor choices and cause much pain. We don't want that to happen of course but that is the way of things. I believe you will always wonder what if? But you will come to terms with life as it is.
    Hope this helps a bit. Please accept as much help as you can get. It is the wise thing to do and the best for you and your children.

  26. Wow. This struck a chord with me, too. I generally don't think about things like this when I can help it, but there are those times when it just sort of creeps up on me anyway. It hurts that there are "ghosts" out there. There shouldn't have to be ghosts for any of our children.

    I am sending love your way…

  27. Nadine Hightower says:

    I so much want to give you a hug. I do know how you feel.

    My father died of a heart attack when I was 17. I was devastated. Less that 3 months after he died, his cousin had a massive heart attack and lived. To this day, I can't not talk That Man! He lived. And my daddy died. NOT FAIR!!! I know Exactly how you feel about Stephen.

  28. Katy, I'm so glad you posted this. Not that I would ever want you to be dealing with hard feelings, but I do think this is why blogs are so great- they're an incomparable outlet for our less than pretty feelings, and for realizing that those feelings resonate with many other people.
    Big hugs to you, and your boy.

  29. Mommy07 says:

    This is the best post I have ever read from you, and I like all your posts =) It's real, raw…and so "normal".

  30. I kind of have a Stephen. The 24-weeker in the room next to us in the nicu. I find it easier not to compare F with full-term healthy children, but here was a child who went through exactly what he did (well, not exactly, i was much sicker than his mom, which i think played a part) and here he is, "worse" nicu course and all, and is fairly typically developing.

    But more than a Stephen, I covet my neighbor's yard. Weird huh. When I moved into my house I planed on doing a big remodel, adding a master bath, tiering our steeply sloped backyard to accomodate a playset, the whole nine yards. But then came the IVF. Not one, but 5 cycles. No insurance coverage. Bye, bye remodel, bye bye backyard (of course without the IVF I wouldn't have kids to use the swingset). And then, one and a half years ago, the house three down did my "dream makeover."

    Its weird, I can see the kids and be okay, but when I see that house and yard, I realize the lost dream.

  31. One step forward, one step back, I hear you. Happens for me, all the time..

  32. I can relate, too. We have friends whose daughter is 2 months older than my ASD child. Everyone in our church assumed that they would become best buddies, but I knew when my daughter hadn't learned any words yet and the other mom was showing off her daughter's ability to say elephant that trouble was ahead. I pretty much cut off as much interacting as I could with them. It doesn't help that the other child is fairly precocious, and compliant, which just highlights the differences. A week ago they were sort of forced to share some time together and the other girl was correcting my daughter's "best-guess" spelling and teasing her for making a letter backward. I'm impressed that my girl can write and is making the effort to learn how to spell…and that she didn't react to the barbs by lashing out aggressively, which a year ago she might have. It's just irritating. For some reason other typical kids, even those my daughter's age do not bother me nearly as much, and it really isn't that the child is a monster or anything – under different circumstances I might find her quite charming. Hard to explain, but nonetheless real.

  33. I have a Stephen, too. A kid in our neighborhood who was born the same month as Max. We hired a massage therapist when our kids were infants, and I remember she had so much trouble with Max because his limbs were stiff. Today, whenever I see that boy, it hurts.

  34. Candace says:

    I am soooo there with you Katy! We have family friends whose son is five months younger than Faith and I just can't make myself go to his parties. You hit the nail on the head with this, it's exactly how I have felt! Actually, over the last two years our friends stopped inviting us to his parties. Maybe they could tell, I don't know!

  35. I get, I understand…….wish I didn't, but I do

  36. Wahzat Gayle says:

    Unfortunately this kind of feeling is all part of this trip that we are on! Sigh
    and some days will be worst than others.