Thursday, June 16, 2011

Who knew a haircut and a bath could be so exhausting?

OH my!! Maybe it was going bowling before the haircut and bath, I'm not sure. Daniel has his habits and routines to be sure. He has pretty much figured out church on Sunday and doesn't fall asleep quite so quickly after church as he used to  but most other situations totally drain him! I watch my sweet baby , with <5 of his brain  in his skull, trying to figure out where he is and what is going on around him, and now that we  are bowling every day, bowling is not quite so tiring for Daniel  either, but today...........oh my sweet baby needed a haircut and a bath VERY BADLY! He screamed all the way through the haircut...SCREAMED, slobbered, buggered, cried, fluids were everywhere all   because I gave  took about an inch of over grown thick hair off his head for the rest of summer. You would think I  was cutting off his skin the way he protested! I cuddled Daniel for a long  time after the haircut and he fell deeply asleep. I LOVE CUDDLING DANIEL!!!!!!!!!!!!!!!!! His wonderful shower chair which  is his new and  usual place to hang out in the house  needed a bath almost as badly as Daniel did ,so sleepy baby and I went to the bathtub. Not quite as bad in his thinking as the haircut,  I am guessing,  he protested for a  short while. MY thinking is that a warm bath  feels good to anyone and everyone.......  eventually. Showered and all the dead skin removed from his tight little fists, and from under his toes and arm pits, my sweet little man smelled great and  and looked super! Upstairs to his room, lotioned and dressed, Daniel was ready for his bed! WHEW!!!!!!!!!!!!!!!!!!!!!
How amazing it is to me that Daniel has been home with us for one year and one week!!!! He has done so well with his surgeries, with feeding through a tube , with clothes and blankets , and with his much busier life in Oklahoma over that in an orphanage in Liberia!
In this year I have come to know that  sometimes he is ticklish under his arms  and on his shoulder blades. SOMETIMES! Not always. He HATES having his hands touched unless I am slapping them . Sounds violent but I don't mean "hard" ,  but stroking his hands invokes a very negative, frightened , irritated default response  while a slapping motion brings out an almost immediate smile and then laughter!!! He hates having his hands stretched or his arms touched to get his clothes changed or to powder under his sweaty armpits but LOVES when I tap on his elbows, or "type "  on his forehead.  Our doctors tell us that Daniel does not remember anything  and is not aware of individual people or events. TELL THAT  to anyone who watches me set up his feeding tube for a meal! SOME DAYS, as  soon as I pull up his shirt so I can hook up the tube to his Mic button on his tummy , Daniel responds with a smile  and or a roar of pleasure. While his meals are flowing into his tummy from the tube, he  may wiggle and smile and make as many pleasure-sounds as a baby could make. Daniel may never say a "word" but I hear his thoughts . I understand his "talk". I understand his body language. A year  ago I  was learning how to read my precious baby. Now I know that I KNOW him. Daniel would love to be held , in my LEFT arm  all day long. I am left handed and that arm is stronger. ALL my other  babies liked my left arm best too. It didn't take a brain  for Daniel to  know what felt best.Daniel is no different from all his other older sibs in that respect. . When I hold him against me, on his tummy , he snuggles. That too  apparently requires no brain for a baby to default to . When I stroke his legs he smiles, he roars, he "talks"  and he laughs. Sometimes his ribs are ticklish too and the laughs are precious to hear. SOMETIMES all those touches are not pleasant  or welcome and Daniel screams. I never know how he will respond until I start an interaction. . Strangely, a slapping of his cheeks or tapping of his hands or forehead almost IMMEDIATELY calms him back down. This tells me that he is not in pain but  more of a protest reaction. To an outsider it may look very strange to tap or thump like I do,  but Daniel is NOT wired like a typical baby. I am careful in how I respond to his "likes" and WHERE  I respond to them as well. A lot of people seeing Daniel, back off but can also be very quick to be critical.  I have to inject here that VERY few people even in our church  seem to have warmed to Daniel. VERY FEW....as in: I can count on the fingers of 1/2 half a hand  who have asked to hold  him, or who HAVE. My baby, in his blind,  totally dependent state, makes people uncomfortable, I guess. He puts people off. They don't "know how " to relate to him... I suspect because babies are "supposed to" give something back when held or talked to and Daniel  just can not always do that ; may be it is something else. HE is BEAUTIFUL, he is sweet, he is a baby whom God blessed this world to know. Kind of like Jesus Himself,
" He came unto His own but His own received Him not" It has not hurt me as much  as disappointed me  to watch people's responses to my son. Our church, our friends, PRAYED THIS BABY HOME, but they don't love on him like they do "normal "  babies.The few people who acknowledge him at all  occasionally stoke his leg (maybe) and say  "awwwwwwwwwwww, sweet Daniel" and keep walking.   I can not express how it touched my heart two weeks ago when a new family came to our church , the mom was someone I'd met at baseball several years ago; she too is an adoptive mom, and her IMMEDIATE response to seeing me holding Daniel was to ask "Can I hold him?"  She took him from me and just loved on him. He cooed , he smiled, he was as beautiful as I see him all the time. I could not help but think about how much the "distant" people are missing by not spending a bit of time loving on Daniel. I am so thankful for the year we have had WITH Daniel, for the year + that we spent praying FOR him, and for the time  we have ahead...however much tiem that might be.
Right now Daniel is sound asleep after his hair cut and his bath. I can'timagine life without him. He is soemtimes "difficult"  and "different" but he is our beautiful, PRECIOUS BABY and WE get to be his family!!!!!!!!!!



The clippers, the bath chair  and the cleaned up, trimmed up , exhausted baby Daniel . No photos of the splashed up sweaty Mamma!!!!

10 comments:

Mama D.'s Dozen said...

Thanks for sharing your heart. I am so sad that you have been hurt by how people have responded to Daniel.

I want to respond to these thoughts of yours ...

"(he) makes people uncomfortable. He puts people off. They don't "know how " to relate to him... I suspect because babies are "supposed to" give something back when held or talked to and Daniel just can not always do that , may be it is something else."

I met Daniel last summer, after he had been home just a couple of months. I was not uncomfortable around him ... not at all. I was not "put off" by him in any way. Did I hold him? No.

It was apparent that you were still learning about Daniel's likes and dislikes. It was obvious that he didn't respond as other babies do. It wasn't at all that I wanted him to respond to me in any certain way, but I definitely didn't want to hold him and make him upset (as you had explained how differently he reacts to things). I remember wishing that I knew how to connect with him ... how to make him smile as you could.

I'm sorry if my response hurt you in any way. Please forgive me. I do believe, though, that if we lived nearby that I would have often offered to hold him.

Yes. Daniel is sweet. He is a blessing. He is a child of God. And, he is BLESSED to have you all as family. I am so sorry that he has not been welcomed by your church family. So sad. So hard.

Wishing I could give you and Daniel a big hug right now.

Love you all LOTS!!!

Laurel

PS: Elijah just asked me yesterday when we could come visit your family again. We all have precious memories of both of our visits to your home.

whenpigsfly said...

Thanks for that Laurel!! You didn't offend me and its funny, I don't remember you NOT holding him!!!! Trust me, Daniel DOES NOT always respond happily to me either, and I've tried to convey that to people who ask what he's "like" etc so they are not put off by his responses or lack thereof. In watching people with other babies, what I see most often is not a thought of "how will this baby respond to me?" but "GIVE ME THAT BABY SO I CAN LOVE ON HIM". Sometimes Daniel has absolutely no responses at all. Those are the times I try a bit harder to bring a response, and most folks do that too when they hold someone else's baby and the child doesn't smile, fusses or looks scared or isn't responding the way the holder would like. Sadly, I think that most of the people who are somewhere in Daniel's "circle" somewhere, have no idea how this looks, which, ironically is JUST LIKE Daniel. No one has ever said to me that they'd hold him but they are afraid it will scare him or whatever. I've told stories for months now about how I've discovered that a lot of Daniel's responses don't have much "root" because he turns on a dime from a blank look to a raucous laugh or to a gut wrenching scream, and with the tap of his cheek can turn it all "off" again. Yes he hated all that hair cutting last night and the screaming wore him out. Every time I stopped buzzing his hair, he stopped screaming almost immediately and started right back up again.It had to fall into the "oh well" category because even a very special needs baby has to have certain things done , like them or not. Nothing anyone else is going to do with Daniel would EVER draw "The Haircut Response" . Those folks who hold back are missing the touch of some of the softest skin they will EVER touch (or not touch) and the most trusting eyes staring up at them. Daniel is a taste of Heaven on Earth.
We'd love to have you back this way if your next Road Trip is in this direction. Our kids had a lot of fun too!!!

Jill Samter Photography said...

Hugs sweet friend!

I love your precious son and just realized I don't think I ever held him while I was there. He slept in the wagon almost the entire time of my visit. :-(

Love the last photo of him!

Love you!
Jill

Megan said...

Thank you for writing this - it was so encouraging for me to read about your sweet and passionate love for Daniel and how precious he is. We just had two sermons at church on God's good design in disability and how our church families need to reach out and respond in love to each other, specifically noticing that our children with disabilities are also designed and purposed by God for good. We have listened to these sermons over and over at home and have been blessed to rejoice in God's good plan for us and our children. I am confident that these sermons were a great encouragement to our church as well. You can listen to them here if it would be a blessing to your heart as well:

Why Was This Child Born Blind?
http://www.desiringgod.org/resource-library/sermons/why-was-this-child-born-blind

The follow up sermon was The Works of God and the Worship of Jesus
http://www.desiringgod.org/resource-library/sermons/the-works-of-god-and-the-worship-of-jesus

I'm glad you are blogging again, though I know it takes time from your already busy days. Hugs!

Megan

whenpigsfly said...

THANKS Megan!!!!!! I will pull those up later tonight!!! Might even get to blog a post tonight too!

His Hands His Feet Today said...

Beautiful post! and beautiful child! and you KNOW that I'd ask to hold that little angel boy!

Yes, listen to those Piper sermons! and I also recently wrote a post on the matter. They are created for a purpose just the way they are by our CREATOR!

Love,
Kim

Denise said...

I Love this post!I know all to well the hurt and sadness from Not wanting to hold l,ove or getting to know Daniel.Our sweet Liberian son came home a couple months ahead of Daniel.Our son has severe cp visually impaired,hearing impaired,Developing at 4 to 6 months old at age 6 very tiny for his age and also has a trach and g tube.Not many want to hold him or cuddle him.It does bother me as he is a wondeful baby and they are missing out on so much!Daniel is a beautiful child and has a wonderful Mommy!I have read your post along your journey!Daniel is blessed to have such an amazing mother and siblings loving and nurturing him.God Bless!

Anonymous said...

Is there any chance that Daniel also have some sensory processing issues? The haircut part made me think about my son and his total dislike of haircuts and he was dx'd with sensory processing disorder when he was a little guy. Also, does he like things that vibrate since he likes firmer touches? I am just thinking if it were a sensory issue that his Occupational Therapsit could help so much in helping to find comforting things for him. I also think you are doing a great job of caring for him and finding what comforts him, but wanted to add what I lived with my son just in case! Also, with our little one who has severe special needs - for me it isn't the not wanting to hold her as much as the people talking baby talk to her - drives me nuts!
Dannette

Kat said...

I hadn't managed to check on blogger whenever your posts had been coming up, so I just decided to drop in. I missed hearing about your lovely family! To read about Daniel is a blessing to my day. How someone could not just want to kiss on that beautiful face all day long is a mystery to me :). He is such a blessing from God. Thank you for sharing, I've been wondering how he's been doing (as well as all of you!). Hugs....

Hannah said...

Linda,

This brought such tears to my eyes and hurt to my heart. I know we aren't attending SCC now that we have moved - but I feel you are saying 1) I don't love Daniel and 2) the blogosphere knows your hurt about this before I, or anyone in the church, knows or has a chance to understand your hurt.

I held Daniel in the nursery toward the very end of our time in OK. He was so precious and just lay in my arms peacefully, but it took a long while for me to gather the courage to hold him. It was not that I expected anything of him at all, it was that I was holding a sweet child with a shunt and a feeding tube that could feel excruciating pain by being moved in a certain way. I didn't want to hurt him and I didn't know how not to. Most of the time he was so happy and peaceful in his car seat, or wagon, or your arms - I didn't want to hurt him by asking to move him. I wanted to hold him so many times - but I didn't know how. Perhaps that is the same with many in the church.

Like the new family that came to church, I have some experience with adoption and special needs so it was not as unfamiliar territory as it would be for most in our church - and it still took me a good while. I will not say I know all of their hearts, but neither do you and saying they don't hold Daniel because they expect something from him is a very bold statement.

Before he came AND after, I wept and prayed for this little man - when I stroked his leg and cooed to him after church, I was praying for him. I'm sure it is the same for many in the church.

Please consider sharing some of your thoughts with our church family and be a loving teacher to them. There is so much love in that church and I know they love Daniel. He is a special little boy and he is shown love in a special way - perhaps it's a way that will be different from other babies (of course you know that from slapping and punching him to comfort him!). It's unfamiliar ground for everyone.

Daniel is a very special gift and his presence teaches people even further out of their comfort zones. But you are his voice! Please teach others with the same love, compassion and understanding that you have shown Daniel.