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A Celestial Boy in A Telestial World

I lay in bed, my boy snuggled tightly against my side, As his breathing begins to slow, I smell his hair and my heart swells with the magnitude of my love for him. This is my favorite time of the day with Little Man, as the quietness begins to heal the hurts of the day. I begin to contemplate the miracle that is my son.

Born to a heroin addicted mother and brought into our lives at three months through foster care and adoption, he is better off physically than many other “crack babies”. He can walk and talk, but at almost 12, my three year old granddaughter surpasses him on almost every level now. Sometimes I cannot stop the flood of grief as I compare where he is, to where he should be.

Particularly hard are the early morning hours. He quietly begins to jerk in waves as the seizures take over his brain and body. I try to decide if I need to get the magnet that will activate the device implanted in his chest for his seizures. His feeding pump whirrs softly, feeding him formula through a tube placed into his stomach, to replace what he either can not, or will not eat. I am intensely grateful for his medical equipment, in another time and place our son would not have survived. With some help, he grows and thrives.

His diagnoses are many. Sometimes we call him our alphabet soup boy, as we recite the letters that so benignly spell out ours and our son’s life. The words, mental retardation, autism, and epilepsy, are ugly, but cannot begin to describe their impact in our lives.

Like so many others, I was under the impression that being given a Celestial child to raise would be a blessing our in lives. Happy and loving are words often used to express the specialness of a child who is unaccountable for their actions. The children with disabilities who you see in public do not disabuse you of this belief. But for every one of those children, I wonder how many, like mine, can not be taken out in public very often.

My child might be Celestial, but my day to day life with him is Telestial to an unbelievable degree.

Our days are unpredictable, although we can often gauge the “weather” of the day by how the morning routine goes. Easy mornings are infrequent, difficult ones more usual. Pretty much everything is a battle. After a morning snuggle, it is time for the boy’s shower. This is my husband’s job. Most mornings there is much ugliness. Toys thrown, threats, name calling, and yelling. All of it emanating from my son. My husband sighs and repeats himself over and over. We are trying to work on the boy’s self care skills, and part of it involves teaching him to wash himself up. We have been working on it for months, and with a great deal of struggles, we can usually get him to wash his legs and tummy.

After the shower and lotion for his dry skin, it is my turn. “You need to sit down and go poo”, I say. “NO!” He screams at me. “I am going to count to three, and then you are in a time out.” “NO!” “One, two”, “You are stupid, I won’t!” At this point he has dumped the bathroom trash can over, and thrown my book at me. He finally goes, and I do the wiping. Always. But this is better than when he goes in his underwear, which is still a daily occurrence. A good day and he only has 2 accidents, bad days, they are multiple. It gets old. Very old. I wonder if he will ever be able to take care of his toileting needs. I wonder if he will ever learn to put the seat up. I wonder if I will ever learn to LOOK before I sit down.

My son is ruled by his impulses. He has brain damage that causes him to be unable to govern those impulses for the most part. Some of it is funny, like when he kisses a stranger. Some of it is dangerous, like when he pushes my granddaughter off the bed. He lives by his routine, and any kind of unpredictability is bound to set off a reaction. He would love nothing better than for his day to be exactly the same, every day. But as human beings, and with five other children and four granddaughters, that kind of predictability is impossible. We do our best, but our best often falls far short of what he wants and perhaps needs.

I am very grateful for the extra help we get, because without it, I don’t know what would happen. He has a therapeutic afterschool program he goes to every day, and a summer program when school is out. He needs one on one supervision at all times, even at night. When he is home, I can not do anything else, but take care of him. That doesn’t mean there aren’t times where he is playing safely in his room, but they are unpredictable and I never know when all heck is going to break loose. I hate starting things, because the chances that I will get to finish what I started is slim.

He exhausts us. Mentally and physically. Taking him somewhere is not an easy task. Getting him dressed, getting him out the car, getting him buckled in. All of it is hard work. He does like to watch movies, so we are more likely to take him there. BUT. We need to get there late, after the lights are out, otherwise, he gets really wound up with all the people and the noise. Sometimes we have to stop him from kicking the seat in front of him if we aren’t lucky enough to sit where there isn’t anyone. While it is normal for a small child to be wiggly and kicking the seat, it isn’t normal at his age and it isn’t normal for us to have to stop his legs and feet with our hands 20 or 30 times. We don’t dare leave with everyone else. He will push and hit people as he is going by them, so we sit in the theater until everyone is gone.

I suppose some people wonder why we do it. We worry about the future. In spite of all the difficulties, and the daily worries and problems, we love him more than we can say. My biggest fear is losing him. Either to death, by way of a seizure or one of his other medical problems, or because he has gotten too aggressive to live with us anymore. I fear that the most. The thought of him being locked up somewhere makes me frantic and desperate. I can not seriously discuss it without losing it completely, sobbing and unable to breathe.

There are so many things we can not do anymore. Camping, quick trips to the store with a child, day trips, quiet evenings with my husband. Going away with my husband. We haven’t had a night away in almost 12 years. Without the respite we get on Saturdays, my husband and I get almost no time together. But I am okay with it. Because if I was able to do those other things it would mean my Little Man wasn’t in my life anymore. I don’t want a life without him, so I choose the life with him and I am grateful for it. I love my boy.

Jo, 48. Lives in Utah. Convert to the church at 18. Married 29 years to a long suffering man. 6 children, ages 28-12. 5 bio, 1 adopted. 4 amazing granddaughters. Long time foster parent. Retired homebirth midwife. Native American, Lakota, (Sioux to the rest of you). I have a degree in Social Work. I love needle felting, photography, reading and chocolate. I have been told I am inappropriate, I am not sure what they meant by that, but feel free to come hang with me and I will wow you with correct and obscure female anatomy terminology. Come visit me at my blog anytime,

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