Being the parent of a seriously ill child is no doubt difficult. You have an innumerable amount of things going on that have to happen to keep your child alive. Just knowing that is stressful, but actually dealing with it is a whole other story. One of the especially heartbreaking parts of it all for me, is my healthy little girl. Unfortunately, your sick child requires more attention, they may need to be hospitalized (for long or short periods). They have to come first because for them, it's life or death.
So, she stays with her grandparents. She is taken care of and happy. I call her every single night, and I can tell she is heartbroken. She begs me to pick her up, cries to me, and honestly the part that hurts the worst, is that shes hurt so many times over it that she stopped fighting it. I know that should be a relief, but its depressing at the same time.
She suffers too. The siblings go through this too, they miss there siblings, and life becomes so much out of their control that behavioral, and emotional problems can arise.
Dakota is an amazing big sister. She knows bubbys heart is "broken". She pretends to be his nurse. She always makes sure if he's okay, and tells us to call "Dr.Kims" (Dr.Kim). She kisses him and putts her hand on his face. She's never hateful towards him, she never blames him, she loves him and makes me so proud. So here's to the siblings of the chronically ill. They too, make sacrifices.
Leave a comment below if you related to this post, I'd love to here your story and feedback. <3
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I'm struggling with this very thing right now. My son was also born with a CHD and developed pulmonary vein stenosis after his first surgery. It's rare, which means rarely treated, and has a very high mortality rate. His effect four pulmonary veins and thus far has returned a mere four weeks after every balloon dilation. Only one hospital in the country has a team dedicated to trying to treat it, and that hospital happens to be almost a thousand miles from home. Rather than uproot my eight year old daughter, I chose to have my mother in law come to my home (husband travels for work) and care for her in our own home. She goes to school and girl scouts and has play dates with friends. She sleeps in her own bed and has her own things and her dog. But she doesn't always have her mother.
ReplyDeleteMy son is seven months old. For six months of his life he has not seen the sun or breathed fresh air. He's had a five foot radius around a hospital crib. He's had three open heart surgeries. He's been placed on ecmo on two different occasions. He's had strokes that have caused brain damage. He has had a very hard road. But so has his sister. For five months, I've only been with her a total of four weeks and it kills me.
Our next journey, provided we ever go home, is to move several states away so that my son can receive the care he needs and my family can be together. Right now it's a matter of trying to fund such a move, but where there is a will there is a way, and my children have given me a very strong will
Thank you for sharing.
Wow Lacey, your story is incredible! It really sounds like you all have been through alot, and thank god she is willing to care for her although you wish you could. Your daughter will understand, and she sounds very strong. Don't ever give up hope momma! CHD effects everyone involved unfortunately :(, I will pray for you and your sweet children! <3
ReplyDeleteWe are inpatient again and I miss my 3 big kids like crazy!!!!! They are 7, 5, and 3. I feel like my heart is split into 2 and hope one day we can all be together again.
ReplyDeleteI always feel like my hearts being pulled in every direction! Stay strong parents :( !!! You will get through this!
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