Kara’s oldest son introduced her to caregiving. She has four children, three surviving. Her oldest son is 12. He is autistic. She has a daughter next. Her third child was stillborn, and her fourth child is a boy with rare genetic disorder called HHT.
Her oldest son was diagnosed with autism at age 10 in fourth grade. At that point the school started intervening for him because that was the first time his behavior required it. He had speech problems as a child. His therapist called him “unique.” He always had odd behaviors as a child, such as sitting on his brand new sister’s head when he was three years old as one of his first interactions with her. He really struggled to connect with both of his siblings when they were new.
In retrospect, she noticed that he always had a hard time with large groups of people, even as a new baby at his blessing gathering. Their family moved when he was 18 months, and people came to help—he freaked out. She never expected him to have such a meltdown, but he felt that his world was falling apart. In kindergarten he would not talk to his teacher. At the kindergarten program, he would stand and sit down with the other kids, but the only time he opened his mouth was to yawn. He memorizes facts very easily and impresses his science teachers.
He is in sixth grade now. The routine of school is good for him, but when the routine changes it is really hard. Once he missed his bus after a fire drill, and Kara was limited with who she could call because he has a strong stranger danger instinct. If he opens the door to someone he doesn’t know, he will close the door in their face.
Her younger son has serious physical needs. He has HHT (Hereditary Hemorrhagic Telangiectasia), which is a relatively rare genetic disorder that causes the body to randomly not have capillaries. To make a long story short, when Isaac was two years old, one day he lost his ability to stand and to walk, due to an AVM (arteriovenous malformation) in his spinal cord. It took several days and a transfer to a regional children’s hospital to figure out what was going on. After months at Primary Children’s Hospital, and years of various treatments, he is now quadriplegic. He has a trach tube to breathe and a G tube to eat. He can suck on various foods, and likes to eat that way, but he can’t chew and bite. Kara and her husband also help him with elimination needs. They clear his breathing tubes before he goes to school, and they often cap the tube so he can talk. He loves to talk.
At school, he has to use a marker to write or magnets for spelling tests, because he doesn’t have the dexterity for using a pencil. He can recite how to make the shapes of the letters, but actually doing it is a hard process for him. They also have a stander, a tool to help him stand at school, because it is good for him. He loves to participate in everything at school, including PE. PE is his favorite. His helpers make his own version for everything. They push him up and down the floor with his wheelchair when the kids run.
Kara appreciates that he likes to go to school, because she can send him there without feeling guilty. Her son will probably never be totally independent, but he may eventually get to marry and have a job. His injury had no outside trauma, such as bone or muscle damage. He has a great personality and will likely have normal social opportunities that way. She worries more about his autistic older brother having a normal life than about him.
She had to really think about what is the hardest thing about caregiving. She says it is not so much the daily things, although they can be overwhelming. The hardest thing is taking care of herself. She cited internet memes where you can only pick two things, and you just can’t have it all. She said when you have many other things that are an essential priority, you end up putting herself last all the time. She gets frustrated and depressed when she reads articles about the effects of chronic stress for you, how it decreases cognitive abilities, and is bad for weight gain. She gains twenty pounds every time someone is in the hospital. Weight gain doesn’t stop after a hospital stay, because there is another adjustment period every time.
So many things get in the way for all of us, but having a big list of extra things can really drain on physical energy and emotional energy. When her son is sick, he is in bed for the duration. They are lucky if he is sick for less than a week. Leaning over him around the clock leaves her back and feet sore. That is one of the hardest things.
She has a hard time recognizing those times when her work is worthwhile. It becomes routine for her to be saving her son’s life all the time. One of her best caregiving rewards is after her autistic son has an emotional meltdown, and he comes to her to say he is sorry and he loves her.
Autism was originally seen as bad parenting, and it is helpful for her to know that it is not her faulty parenting that causes his challenges. It is still hard for her to internalize that sometimes. When he comes to her and apologizes or has a good conversation, she appreciates it more because of the contrast of those times when they can’t talk to him. Kara’s favorite reward for taking care of her children is connecting with them. Isaac is very loving and lovable, giving great hugs.
She sometimes worries about her daughter, because she sees her maturing at an unusual pace. She sometimes wishes her daughter could have more of a carefree childhood, but also appreciates the independence her daughter has learned from necessity at times.
The day her youngest son lost his ability to walk happened to coincide with the day her brother got married. It took around 24 hours for the teams of doctors to figure out what was going on, what his diagnosis was, and what the prognosis would be. Her husband sought a blessing from his brother, and the message was that God was aware of him, and that this was part of the plan. Their son survived, so Kara feels there is something important for him to do. She has great hope for Isaac because of his outgoing personality and friendly disposition.
Thank you for lifting me with our talk, Kara. I honor you.