Grace for Rett » Grace's Life with Rett Syndrome

Crying and Screaming {and sometimes Grace cries too}

I’m sitting at the bottom of the stairs crying, holding grace who is nearing the one hour mark of screaming, crying, throwing her body around in my arms. There’s nowhere else I can go. I can’t take her into the warm sunshine of the back garden because all the neighbours have their doors open. The boys are in the front room having a nervous breakdown from the ear piercing screams. I can’t justify a back breaking trip upstairs simply to sit in a chair. I’ll do my useless comforting at the bottom of the stairs thankyouverymuch.

I despise these screaming hours. I’m totally helpless, completely useless to help her. I can’t hold her standing up because she doesn’t wrap her legs around me. She just hangs there, breaking my back.

I do what any parent with a voiceless newborn would do. I run through the check list. Hunger, dirty diaper…I have no clue what’s wrong with her. She’s had all her meds today. Has she had a poo? I try to think past the screams {which have now muffled my hearing} to remember the last time she had a poo. Has it really been so long that I can’t even remember? Could Steven have changed a poo diaper that I don’t know about? Yes that’s it…she must be constipated! Even still, there’s nothing I can do about it but hold her while she gives birth to her gigantic poo.

The poo never comes. She cries herself to sleep in my arms and before I know it, I’m sleeping too.

These times baffle me. While they’re happening, I swear that I won’t ever let it happen again. Next time, I’ll definitely know what she needs. I tell myself that there won’t even BE a next time because this surely can’t continue. And then a day or two goes by and it becomes a blur. I question if it was even as traumatizing at I thought it was. I think I must have been overreacting to have cried and screamed, too…I think that she must be totally fine…I’m just making it seem worse in my head. But then the next one hits and it’s even more pain filled than the last. And suddenly, I find myself again, hiding away in a safe corner of the house holding my giant, ridged, screaming toddler who has no voice to tell me what is wrong.

Rett Syndrome, you suck. I just wanted you to know.

Sara - April 22, 2011 - 8:10 pm

Words seem empty but I do understand these moments so well. Wish I could hold you hand. Xx

I agree totally though Rett Syndrome sucks big time. Xx

sheila holt - April 22, 2011 - 8:14 pm

WOW! Beth! words are not even forming to know how to begin to try to comfort you right now. i read over everthing you wrote about 3 times, feeling each part as i read and re-read.
sweetheart, know that i will be lifting you guys up in prayer way way more often than ever before, after reading this. i truly had no idea of just how much you had to deal with while loving her and doing all you can to help or fix or whatever can be done.
im just in ‘awe’ that God trusted you guys so very much to give you such a special precious gift to take care of for Him. He knows you are perfect for the job. Please know even in these times you are describing, HE is with both of you at all times. He has his arms around you, holding you as you hold Grace.
im going to go pray right now. thank you so much for sharing these times with us.
we love you guys.
i know these are not posted, so thanks for that. but can you just let me know that you did get it, please?? thanks.
you are awesome!!!!

admin - April 22, 2011 - 8:23 pm

Hi Sheila yes I got it! It’s really touching to know that people are praying for Gracie. Thank you.

Shawnie - April 22, 2011 - 8:58 pm

Hey Beth,
You are doing an awesome job in the circumstance. Your Gracie is probabley trying to tell you but can’t. So take that as a step its hard I am sure when your in the midst of the screaming and crying but you know by all of that noise…Gracie is in there trying to communicate. You are doing what any mother with a child who can not speak would have done. My Gracie Mae has Autism and even though I have no idea what it feels to have a child with Rhett’s I do know I want to scream and cry too. I just try to remind myself I can handle this…God would not have gave me this child if I did not have what it takes to help her. You are an awesome Mom and you are doing great. 🙂
Luv,
Shawnie

Mila - April 22, 2011 - 9:09 pm

Firstly I can’t help but notice what a great and talented writer you are. You can pour your feelings into words as well as any successful writer I’ve read. You might think about starting a book of short stories with Gracie and your other children. I know you are very busy, but you are also very young…so there is time.
From your writing, I am gathering that Gracie is fighting fiercely. Not you, or anyone else but this condition, even if it seems as if it is directed at you at times. Sometimes as a parent, one can not be objective enough, as one has not stepped back long enough. I don’t have any children, but I ‘get’ them. Especially the little ones. Often parents lean back and observe my interaction with them and at times they marvel. That happens not because I am so great, but because they haven’t stepped back long enough to really see. Really see.
Rett children (and I believe that there is such a variety of their personalities in their condition, almost more so of a variety than with the personalities of regular children) I believe, do not do anything premeditated, even if it seems that way at times. They are just deeply honest and not brutally so either. They are deep and they know so much so, that the other things lacking can be substituted. And they have to be!

Also, I believe that she is fighting the predicament at hand and you are helping her fight, and that is all you can do. She may not know that, but you know that. Mothering is not always appreciated the way mothers deserve, but it will always be remembered.
It sounds like an opera period passed, and the poo passed and all can be well for a while. Love that girl. And who knows maybe she can be a little opera star. She sure looks like one in the last video with the pearls. The glasses are just too cute too. Thay are so ‘her’. She makes everything so ‘her’, seems like. Not many people can claim that. She ‘owns’ whatever she does or wears!

Mila 🙂

Shipra - April 22, 2011 - 9:11 pm

My heart is aching for you and Grace. I don’t have any words but if I could sit with you and help hold her, I would.
You’re a truly prolific writer, I always feel as though I’m in your heart when I read what you share and that’s a rare and beautiful gift. I know that your words must bless and resonate with so many other families that have to face Retts everyday and I think you must be a great comfort to them because you understand.

Rebecca - April 23, 2011 - 1:47 am

Beth,
I understand how much you hurt, and how frustrated you are over this, Deanna and I used to take turns holding Brendan as he held himself rigid, and cried and screamed. The good news for us is it happens less and less frequently. Brendan is 4 now, and though he still has melt downs, it is rarely as severe as it was. We did find a couple of things that helped. One was brushing, and the other was compression therapy. The brushing was simple. I still don’t know why it helps, but it does. Take a soft brush, and stroke her arms top to bottom, even strokes. 10 times each arm, then her palms, then her back, then her legs, and the bottom of her feet. Never in sensitive areas, underarms, inner thigh, etc. The therapy place use this method on both Brendan and Bella if they are having trouble transitioning between sessions. The compression is similar, but harder to explain. But it gives noticeable relief to them. After a session they are calm for as much as 2 hours. While she is sitting stand behind her, put light pressure on her shoulders and push down and release rather quickly, do this 10 times. then holding her arm, one hand on the shoulder, one under her elbow, and firmly, but gently,”compress” the joint, Here is a your tube video that shows compressions being done. http://youtu.be/HvtV8owbR3o Apparently this stimulates some part of the brain that allows them to calm themselves. I am sure that Gracie’s OT showed you this, but if not, give it a try. It certainly cannot hurt.

admin - April 23, 2011 - 1:13 pm

@Rebecca: Yes we do those, but I didn’t know so much about it – great info thanks!

Cathy - April 23, 2011 - 1:14 pm

My Sweetheart- I’m having a difficult time posting through my tears. Am I even writing coherently? My heart breaks with the sorrow that comes when your child is in such distress, since you are my child and I feel just as helpless. I love you so much. Life can sometimes feel as a wild ride like a roller coaster. Sometimes we are filled with hope as when Grace responded to the pressure on her feet, and other times we find ourselves plummeting into the abyss. but finally the ride gently comes to an end and things settle down. You are the best mother my grandchildren could ever have. I just wish I were close enough to hold you in my arms and be there to help you. I guess I will have to be satisfied with holding you in my prayers. Everything will be alright. Love- Mom

Michelle - April 26, 2011 - 6:44 pm

I understand what you are going through. It is difficult to find people who really “get it”. My daughter Noelle is 10 and living with Retts. We still go through periodic episodes of screaming, teeth grinding and stomping. It is hard to do but try to remember “this to shall pass”. Now it is just wondering, how do we make it pass more gently for everyone? Thoughts and prayers.

Kirsten - April 27, 2011 - 4:24 am

I have read your other blog for months now and only just discovered this one. Your other blog has been so inspiring to me as a new mum photographer. I had just cried my way through the last few posts of this blog until I read your mum’s comments and the flood gates opened. Just beautiful, thank you for sharing.

Chris Thomson - May 4, 2011 - 8:40 pm

I think I’ve joined this discussion a bit late! I searched on the internet for reasons why my daughter, a Rett sufferer, screams so much. Sienna is 5 and over the past 2-3 months the screaming has started. No warning, no reason, but it’s there, several hours a day. If I really try, I can turn the scream into a smile but it’s hard work. I am the most patient man imaginable, but this is getting to me, loud music and a glass of Shiraz is of help……..

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