This story was sent to me by a friend I met in Mississippi. The story was sent directly to her by a nurse she knows in her area. It is powerful and I wanted to share it with you, SMILE family. Happy Valentine’s Day – Nina
Last week-end at the hospital I took are of one particular patient all weekend. Even though Mom has read this and I have been given permission by the Mom to print this….She is a humble person and I will keep her name private.
My pt is a 19 y.o. girl that weighs 29 pounds. When you hear that you think of a mal-nourished severely neglected child, but she is anything but that! She was born with Cerebral Palsy-for those who do not know what that is let me describe how that looks. She can not hold her head up. She drools and her mouth will not shut due to the malformation of the teeth and thickened roof of mouth and gums.
She can not talk, but she can smile and at times even laugh.Her respirations are horribly noisy, but that is the way you know she is still breathing. You think that every breath will be her last. (She is a no code) She wears a large baby diaper and it is big on her. She is fed liquids formula through a Peg tube (a tube that goes directly to her stomach)Her legs are frozen in a position that I call butterfly contractures. You might think of it as a frog position, but butterfly sounds more loving. She has limited purposeful movements with her hands and arms except to swat at you when you try to suction her massive secretions. Ok, I think that gives you a visual enough picture so you can understand the level of grace and love that God used her to teach me about.
The Mom used to work in the deli at Walmart. ( so you know the salary level) She was one of his best hardest working employees. No one ever knew what she was dealing with at home. She has 6 kids. There is one 18 year old that is younger than this child.
This Mom did not want the nurses to use the Peg tube because even though it would mean she would get to sleep more than 2 hours (maybe) she didn’t want any pill fragments stuck in the tube requiring it to have to be replaced in surgery. (she couldn’t take anything by mouth)She said this in a way that showed her love for her daughter, not distrust of the nurses.
She had taken care of her for 19 years with very little of the advances that should have been available to a child in this Chronic state of disease. No hospital bed, no stroller, no home health care , no social work…etc. But miracle of all miracles this child that was unable to move on her own or be positioned beyond the limitations of the contractures has no skin breakdown at all.This is the kind of patient that usually had no backside left at all ( solid bedsores)due to lack of movement, care, and proper cleaning. When I began to question the Mom I found such a loving, gracious woman. I told her how unusual it was for her daughter’s skin to be so pretty and asked how she did it. She just replied with a smile that she just kept her clean and dry and tried to position her slightly with pillows. Mom continually wipes the drool from her face and placed a towel in just the right spot to act as a bib. In the middle of the night when she ran a bit of fever her mother picked her up squat legged and all and placed her in her lap and began to rub her back. She did all of the changing of the diapers and all of this care for her daughter with a loving smile. I told her that her daughter was certainly blessed to have a mother like her.Her response almost brought me to my knees. She said “oh, no I am the one blessed.”………and she truly meant it.
This just sort of sent me into “tilt” mode. How can this really be her truth when this child can not do housework, earn good grades, say words to her mom like thank-you and I love you, hugs, and all the things good children do to earn their mother’s love? 19 years of total care for a child that would forever remain infant-like. She then shared that we need to be very careful what we pray for. She had prayed when she was pregnant that “God would give her a child that would remain her baby”. She said He was gave me exactly what I asked for.
Later I thought that this must be an awesome example of God’s love toward us. We really have no more to offer Him than this child had to offer the Mother. There would be no recitals, no award ceremonies, or basketball games won by her ringer shot. But her Mother loved her with such a love like I have never seen. She loved her enough to step over her emotions and make the heart wrenching decision of making her a “no code,” but specified that she not be allowed to hurt at all. She showed wisdom and love while the tiniest of tears were running down her face.
Ok…………then on to Saturday when I came in this week. Pretty much the same situation. Mom had not left her side more than 5 minutes all week, even with nurses attentive to her child’s needs. I knew that they had talked to Mom about placing a trache in the little girls neck and I knew she would be upset. She had decided against it and I reassured her that the way she loved her daughter that she could be certain that whatever decision she made would be the right one. Once again tiny tears were released from her blood shot eyes. I talked her into stepping out and stretching her legs a bit. This time she felt comfortable to be come about 15 minutes.
I sat by the bed and talked to this little child and told her how beautiful she was and that she as a princess. She would laugh every time I said princess so I continued to play with her and the “princess idea”. When Mom came back he allowed me to take a picture of the little girl and I took one of her with this sweet little girl with drool running down her face. She then wanted to take mine…..and me who HATES pictures allowed her to do so. I just felt honored to be connected to this situation where love prevailed. I then was reminded of the costumes that we had that were for 4 year olds. I had not thought if it because she IS 19. I found the costumes and asked Mom if I could dress her like the true princess she is. She smiled in agreement. We decided on I let Mom pick out from Cinderella, Little Mermaid, and Snow White. They were all beautiful and colorful so it was hard for her to choose. As I put the Mom’s choice on her daughter this little girl smiled and laughed the whole time! She was the cutest “Little Mermaid” I had ever seen. Even the little folded up legs protruding from under the little skirt seemed appropriate. We took lots of pictures then as the little mermaid just beamed. After we finished I ended up giving Mom all 3 of the costumes. If anyone ever needed them it was this pair! I wonder how many times we see the drool and not the princess?
In my heart I feel that after all the fun eventually Mom will send her to meet her maker in one of these “princess” outfits. That way everyone attending can see her for the true princess she is and not a horrible Chronic disease that deforms and isolates others from being in a loving relationship this precious little girl.
This has been definitely a “God-thing”. Could it be that we are REALLY not supposed to have to DO anything to earn the real love of a Mother? It seems many times the things that are disguised as love are anything but love. Thank you Jesus for your loving grace. God help us get it!