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When they say that a disease affects the whole family, they're not kidding! [My child with JM] is 9. Her two sisters are- 5 and 4. They really don't understand a lot about what is going on. They probably don't remember her before the disease. [My 5 year-old] goes to the hospital all the time with us. [She] pushes her [sister] around on her IV pole. They both love to see me preparing [my child with JM’s] weekly needle first and then they announce -"It's needle night!". She gets so mad at them. They couldn't understand when I told them last year that they were sick and couldn't go to Chuck-E-Cheese, but [my child with JM]
was going. They said [our sister] is sick too, why can she go? …They have seen me cry about [JM] more times than I'd like to admit. They are jealous at times over the attention given to [our JM child] and probably just as scared, at times, as the rest of us.
We try and treat [our children] fairly and equally. Our number one goal is to have all three of them feel safe and protected. Time alone on a one to one with all of them is very important. Lots and lots of love, millions of kisses and hugs on a daily basis and laughter. Each night I tell each of them--Thank you for being my daughters, you are so special and I'm glad God gave you to me.
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Oh boy, Well [Q] has 2 younger siblings. [R] is 1 so of course too young to understand at this time. However [S] who is 2 1/2 has all the symptoms (in her mind). She consistently complains of aches and pains and says she is sick and needs to go to the doctor. Usually this takes place whenever there is mention of [Q] going to the doctor or for labs. [S] will often say she needs medicine as well. Its difficult to deal with this reaction from her younger sister. I worry that something may happen and I'll overlook it seeing she currently has more aches and pains then [Q]. I also find myself watching the other kids complexion worried that I may see signs of JDM in them.
In answer to how do we respond we just tell [S] over and over that [Q] is not sick she has a disease and she takes medicine to make it better. When she complains about the aches and pains we say do you need to go see Dr. L. and get a shot. That usually works on her and she says she is all better.
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We insisted on all the kids to go to [L’s] appointments. We wanted them to know what was happening to their sister and they really wanted to know as well. They don't get upset when we buy something extra for her when it is a day of 7 hours of IVs. They have seen what she goes through and feel so bad for her. They express how special she is and strong to do what she does. They do get upset when [L] has a tantrum. She has managed to control her Prednisone rages lately, but it has not always been like this. The kids have been wonderful. I am very proud of them helping [L] through this. They are [L’s] helpers and angels as she calls them. I am pleased that we have always included them. They have a better understanding of what is happening to [L]. They have learned that when she has her tantrums that that is not our [L]-it is the medication. They just walk away from her and ignore her. And when she needs help calming down, [L’s] siblings are always there for her.
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