Recently I was telling someone about JF's personality. He is fairly laid back, smiles a lot, and only cries if something is wrong. He has a whole list of things that are going wrong (I think I've spoken to or seen a doctor or nurse every other day since he's been home - and I'm not exaggerating) including diaper rash with a bit of yeast infection, leaking g tube, last stage of flu, special way to eat and sleep, eczema, cradle cap on entire head with a spot on his temple that weeps and continues to get bigger. Yet, despite all of this, when he's full and not sleepy he's very pleasant.
The person I was speaking with (was it a nurse? a parishioner? you? I don't remember.) said sweetly, "Yes. Kids like him are usually so happy and content, even with all their problems."
Kids like him.
It felt so patronizing and judgemental. I don't know if she realized it right after she said it, but I think she did. Oh! All the little retards - they're so cheery, aren't they? It's like they don't even know how miserable they should be.
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Maybe you read Conversion Diary's post about an intellect's experience having a mentally disabled son. The article is very good, and worth the trip to her blog. The part that was most interesting and alarming to me was what a commenter found about Martin Luther's understanding of "special needs" kids.
Eight years ago [in the year 1532] at Dessau, I, Dr. Martin Luther, saw and touched a changeling. It was twelve years old, and from its eyes and the fact that it had all of its senses, one could have thought that it was a real child. It did nothing but eat; in fact, it ate enough for any four peasants or threshers. It ate, shit, and pissed, and whenever someone touched it, it cried. ... I said to the Princes of Anhalt: “If I were the prince or the ruler here, I would throw this child into the water–into the Molda that flows by Dessau. I would dare commit homicidium on him!” ... the changeling child died in the following year…. Such a changeling child is only a piece of flesh, a massa carnis, because it has no soul.
Source: Martin Luther, Werke, kritische Gesamtausgabe: Tischreden (Weimar: Böhlau, 1912-1921), v. 5, p. 9.
When JF was still in the NICU I would look at him and think, "You are a changeling. My real son died inside of me, and you were swapped into his place." Of course that is dangerous thinking and I never allowed myself to linger too long there, but I was deeply troubled when I saw that Luther gave children like my son a similar name. This is not to say that agree with Luther about throwing anyone in the river, or believing that JF has no soul! Only the use of the word "changeling" is the same.
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I am starting to feel exhausted. I am tired of calling doctors' offices. I am tired of cleaning up the contents of JF's stomach. I am tired of fearing that he'll throw up at any minute. Basically, I feel like I'm failing at mothering him. I don't know what I should be doing better, but my best is definitely not good enough.
Travis and I have decided it's all the fault of the g tube. Damn g tube.
Wow Bonnie. I obviously have nothing to say to make you feel better because there are no magic words. I'm sorry that you had to hear such a hurtful comment.
ReplyDeleteWhat a crazy quote from Martin Luther! Very disturbing. He obviously never met James.
You are not failing! It's different, it's hard, it is.
ReplyDeleteAND whomever said that to you is so wrong. Babies, newborns, with severe brain injuries are often very fussy. Developmental people would call it "poor state control." They are easily overstimulated, not smiley, calm and happy. James is not retarded and no one should make reference to him as that.
James is at the perfect time for early intervention and could shock everyone. Kids like him are not miserable. Kids like him walk, talk, and live normal lives. Some kids like him may not, but that is something that will not be known for a long time. This is no time for anyone to say he can't do everything that all kids do.
James is capable! p.s. you're right g-tubes do stink! :)
Bonnie,
ReplyDeleteI've wanted to say so much for so long [since dear James arrived], and I haven't known quite what to say, just that everything I felt like saying was altogether opposite of all the audible celebration I saw from comments posted here.
James should absolutely, positively, be celebrated each and every day! Don't miss a second of that sweet boy. But, there should be grief too, and that is okay.
My brother has Down syndrome. He is nine. In many ways, the lives of my family members, and many lives intertwining amongst those members, have been incredibly blessed by knowing Mark. He is a blessing and God works through him. But reality is also that Mark is bullied and can't communicate this to my mom. Reality is things like poopy underwear being sent home in his backpack from an overworked and underpaid teacher as a form of passive aggressiveness or complicated discipline and security issues. Reality, like the messy g tube and ignorant comments and bills and contradicting advice and dreams deferred, is a reality your family will live with and your commenters won't [while they will have their own struggles]. It would have been ridiculously easy for me to fill your blog with celebratory comments each day I read what's new with James. But, I wouldn't have been true to what I know because it's just simply not that easy.
I guess I can only be myself. While I would love to sit with you in your home and listen to you and let James wrap his precious fingers around my own, I can only say from afar that I hear every word you are saying- I may not know your struggles, but I know your grief AND your celebration. So mixed. So raw. A reality ripped and yet stunningly beautiful simultaneously!
Bonnie, I am praying for strength for you right now. I know you are allowing God to shine through you. He is and He will!
I wish so bad I could give you a hug right now. A really strong, hard hug!
Ash
P.S. My goodness, I hope this makes sense.
Bonnie,
ReplyDeleteI just spent a good 15 minutes writing a lengthy and ... brewingly honest comment. And then was denied to post via some sort of message informing me of said inappropriate length. It should never take someone 15 minutes to comment!
I know "brewingly honest" doesn't sound like a good thing, but I think it is, and although I'm too frustrated [and nearing bedtime] to rewrite my comment, I would like to this weekend.
Would you be able to email me at Ashers143@gmail.com your email address when you get a chance or let me know of an avenue to reach you outside this restricting comment box. It's just not big enough for Ashley Anderson's thought processes.
For now, prayers and love are being sent your way daily!
Ash
Actually, its more the fault of the fact that he is unable to have breastmilk. The immune properties that kept your other kids from getting these sorts of bugs at this age are simply not available to him. I'm not sure whether they were correct in instructing you to stop feeding him breastmilk because of what it did to the thickener in his feeds or not, but certainly the fact that he isn't getting the immune benefits makes a difference to his gut. Of course, I'm not sure that you'd feel less tired and stressed if you were spending much of the day pumping for him either. To be fair I think that babies with older siblings are simply exposed to more germs than he more protected first borns. Of course James has also spent more time in doctors' offices and the ER where the germs are just rampant.
ReplyDeleteI will say an extra prayer for your fatigue and discouragement. I seriously doubt that you are failing in mothering him, I just think that right now you're tired and discouraged.
I never knew that about Luther. I guess he really was the precursor to Hitler.
Bonnie - You are absolutely not failing as a mother. I know that's how you're "feeling" but feelings lie all the time. Remind yourself of the truth - James is doing so well today in large part because of you and Travis being amazing parents and caring for his needs appropriately. Can you even imagine his condition if you weren't competent in caring for him? I continue to pray for each of you as you move forward on this journey of healing.
ReplyDeleteWhat a ridiculous statement about "kids like him!" Some babies are just happy. I am pleased to hear that James is one of them.
ReplyDeleteAnd breastmilk or not, younger siblings tend to pick up more bugs from the older ones. I will pray for your endurance.
Not sure what to say Bonnie, but I want to give you a BIG hug! :) Without a doubt I know that James would not be where he is today without the love, support, encouragement, and care that has come from you and Travis! And of course, prayers help too :)
ReplyDeleteAshley....I recently had a child born with Down Syndrome and I appreciate your comment more than you will every know. It is refreshing to hear the the 'brewingly honest' - Thank you!
"Martin Luther. The influential church reformer was not only an avid storyteller, but -- as his own writings demonstrate -- he was also a true believer in changelings. Luther was very much a product of his own times with respect to superstitious beliefs and practices. He sincerely believed that Satan was responsible for the malformed children known as changelings, and that such satanic child exchanges occurred frequently. {footnote 9} In Luther's theological view, a changeling was a child of the devil without a human soul, "only a piece of flesh." This view made it easy to justify almost any abuse of an unfortunate child thought to be a changeling, including the ultimate mistreatment: infanticide. Luther himself had no reservations about putting such children to death. {footnote 10}"
ReplyDelete"The advance of science during the eighteenth and nineteenth centuries slowly but surely eroded the popular belief that malformed and retarded children likely were not human at all, but rather the offspring of some demonic being, offspring that could be neglected, abused, and even put to death with no moral compunctions. As these theological explanations for retardation gave way to medical explanations, community values and personal attitudes changed to such an extent that the very word "changeling," its synonym "killcrop," and their equivalents in other languages now have become historical curiosities, survivals of beliefs and practices that helped our northern European forebears -- for good or for bad -- face the problems of life and death when confronted with mentally or physically defective children."
http://www.pitt.edu/~dash/changeling.html
Bonnie,
ReplyDeleteI don't know if this helps, but the only thing I ever found that helped my kids' cradle cap was Burt's Bees Baby Wash and Shampoo. I had been advised to use t-gel (didn't work and burned my baby's eyes once). A fine-toothed comb with a good soak of the Burt's Bees baby oil (let it soak) then scrubbed and scrubbed with the shampoo eventually (quickly) got rid of it.
Amanda G.
Wow. I can't even imagine how hard this must all be for you, even with as well as you write and convey your emotions.
ReplyDeleteI have a friend named Lindsay, who is a special education major here at my college. She loves the students that she works with and told me one day, that she believes children and adults with special needs were put here by God because they are the only people who can love with their whole selves. She said that they are the only people she've met who love people unconditionally and that the world needs their love.
James, with his sweet personality that you have described, is just so full of love.
I don't know if this helps or anything. But whenever I think of what Lindsay says, it makes me smile and wish that I could love like those children do.
Kayla, I really like what you said. I have two first cousins with down-syndrome and they are extremely sweet, loving children. Their families would be devastated if anything ever happened to them. As far as Martin Luther is concerned, what he said and believed is absolutely disgusting.
ReplyDeleteWith the cradle cap, for my kids, baby oil has worked great if I rub it in really well, comb through it a few times, then do a regular shampoo later. Within a couple days, it is usually much better. (It won't disappear immediately after you shampoo it). I always heard that cradle cap doesn't hurt the babies, though, just the moms!
Bonnie, I am so sorry things are so hard right now. My kids have been sick and I know how much it wears a mom out to have sick kids, even though I have no idea how hard it must be for you with the extra worry about sweet little James. He even looks really sweet in his pictures! You would have no idea what the poor little guy has been through by looking at his pictures.
Please try to take one day at a time. Don't look too far ahead into the future. The present has enough troubles of it's own. Realistically if we knew everything that was going to happen in the future, we would be scared to death all the time. God doesn't always let us know what is in our future, because He knows better than us what we can and cannot handle. He will give you the grace to get through all of this. With God all things are possible. You have no idea what little James will be like when he is older. He might be able to do everything you and Travis wanted for him. The point is, try not to worry about it right now. Focus just on getting through each day. That is more than enough for now. Just keep telling yourself there is time to worry about all of this later. When later comes, maybe things won't look as bad as they do now. God bless you!
"I never knew that about Luther. I guess he really was the precursor to Hitler."
ReplyDeleteI'm sorry that Luther's "wisdom" brought you pain, but his thoughts were from a different time and context. Even up until the mid 1900's, if you remember, those with mental and physical were abandoned, institutionalized, mistreated, and ignored. This was because of the horrible and ignorant beliefs of the time. Luther, and I would guess, most religious leaders of the time, were no different.
Bonnie, I ask you to ignore all comments about the mentally/physically disabled from history - it will probably always bring you pain. I want to remind you, too, that we have no idea what the future will bring to James (words meant to be encouragement, not criticism). I still pray for his complete recovery.
Thinking and praying for you.
Love, Em
P.S. James is beautiful.
Bonnie,
ReplyDeleteYou are doing great, give yourself some credit! What that person said is awful, but remember at this point we don't know what James is going to be. He is still developing and unlike the adult brain his brain has the oppurtunity to do some healing. James is a good baby because that is James and not because of anything that happened to him! Remember the positive, like how good his MRI was for what he had been through! Hang in there, praying for you all!
Just have to wonder...do you have a family member who can come & stay for awhile...maybe over Christmas break...if nothing else than to help with the two older children? Our parish has a ministry of women who come everyday or whenever you want to help...Don't be afraid to ask for & receive help. It doesn't mean you're "failing", it just means you're human.
ReplyDeleteYou are not failing, you are experiencing the challenges of parenting a child with special needs. EVERY mother in your situation has those thoughts - the "changling" stuff and so on. Seriously, it's not talked about, but it's there. Your best is all God wants from you and it absolutely is good enough. I hope you are using the support network that was in place when James was in NICU- you can't do this without taking care of yourself and taking breaks.
ReplyDeleteYou're doing an amazing job, James is so lucky to have a mom like you!
Hey Mom! These feelings suck and they are NOT the truth. Praying for Our Blessed Mother to give you a huge hug and lots of consoling graces. Baby Tess & I are cheering you guys on from Washington D.C.!
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