Recent events in my life have caused me to think a lot about Sophia as an individual, not just my daughter. I often say I can not keep up with how fast she is growing up. Being a parent is a tough job. Michael and I attended our bi-monthly CHD families support group meeting this week. We had an adult CHD panel and it was very interesting to hear their thoughts and opinions on raising a child with a CHD. I am sure everyone in the room interpreted what was said slightly differently. One of the things that I took away from this meeting is that Sophia’s heart condition is hers not mine. What I mean by that is she is the one who has to endure all the doctor appointments, meds, hospitalizations, needle sticks, etc. I’m just there to support. She will have to be the one to manage and understand her health when she is an adult (of course Michael and I will be there for her always in any way she wants us to) but the burden is hers. I think sometimes that this happened to me. Like “I” had a child born with a CHD. I also learned that I need to teach Sophia emotionally how to deal with her CHD. These are things that I just had not thought of yet when it comes to her parenting. I love Sophia with all that I am and I would not change anything about her. I just want to teacher her everything she needs to know to be a confident and independent girl and woman some day.
May 21, 2009 at 3:33 pm |
Such good points, and we (or at least, I) often lose sight of this. I think that, for our kids’ emotional benefit, we really have to be on top of the things you mentioned.
Sorry I haven’t been commenting lately! I’ve still been reading…just kinda busy these days. xo
May 25, 2009 at 6:28 pm |
I have been a constant fan of the parenting skills of Michael and Patty when caring for Sophia
They name her meds and why she takes them, they discuss her condition as much as she can absorb
She is a very fortunate little girl to have these two to be there for her at all times. Constantly alert to her signals for medical care or just to be cooled off when she is overheated. Even what she eats or how much is closely monitored. Sophia loses weight everytime she gets a cold and they need to help her regain it for good heart health.
I applaul their efforts and will always be there if they need me for anything
May 28, 2009 at 7:24 am |
Thank you for this reminder!
June 22, 2009 at 9:47 pm |
While I hope I am not chastised for this opinion, and while I am not a parent of a child with CHD, I do think her condition is also your burden.
You say “What I mean by that is she is the one who has to endure all the doctor appointments, meds, hospitalizations, needle sticks, etc. I’m just there to support.”
I’d beg to differ, who is there at every appt, giving those meds, comforting her from those needle sticks? You don’t have a choice, it is your responsibility to do those things, you’ve been forced into a situation that requires that you have so much more in your life than a parent of a less demanding (medically) child than I do.
Because of Sophia’s health you parent at a much different level than I do.
I am not in any way saying someone is at fault, or that you don’t love parenting Sophia, but I do think you absolutely share in her condition. (from the outside looking in)
I know it is no where close, but right now I really want Shawn to learn how to swim, so I am signing him up for swim lessons, paying for those classes, go to the classes with him, encouraging him, asking him what he likes best in the classes (even if the answer is splashing another boy in the class), asking if he wants to swim at a pool during non-class times.
You make her appts, you take her to those appointments, you cheer her successes, you ensure you gets her medicine at the appropriate times as no 4 year old would be able to do that on their own. I don’t have to worry about me or my son remembering his doses of medicine, it’s not something we’ve ever done, except a case of pink eye when he was two.
What you do for and with Sophia is far more complicated than learning to swim, you have to parent, and live your entire life, in a different way because she has a CHD. I am not saying I pity you, or that you ‘should’ be asking for pity, but I really do think you’ve taken an amazing responsibility helping Sophia thrive and flourish and it is all that much more demanding because of her CHD.
I guess I don’t want you to downplay the, while perhaps not the exact word I am thinking of, sacrifices you’ve made having Sophia as your daughter. I know you would never play them up, but while absolutely Sophia is an individual and will deal with her CHD differently than you, her entire life, you definitely have been very much affected by her CHD since the day she was born.