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How do they do it?
Fri, 06/27/2008 - 16:03 — admin
Parenting and having a Child with Cancer
I usually have a case of writer's block about once or twice a week when I sit down to write this blog. And then there are those days where ideas just throw themselves in front of me. Well, today is one of those days.
I take the M14 bus every morning on my way to work and today, between reading my book and listening to my ipod(what can I say, I must multitask) I noticed a man with his little girl in a carrier and little boy on his hip attempting to get them both on the bus. Perhaps it was watching his small struggle or that I am reading Baby Love or that a good friend just gave birth to her first child yesterday but something about the moment made me wonder about parents. Specifically parents of children who are diagnosed with a disease that requires lengthy hospital stays.
Michael Guglielmo and Christina Poulicakos gave birth to Giovanni Guglielmo about two years ago and for about two years they have been battling NEMO (Nuclear Factor Kappa B Essential Modulator). Giovanni was placed in Massachusetts General and then Boston Children's Hospital, both hospitals about 100 miles away from their New Hampshire home. But yet, they each made sure that Giovanni never woke up to a strange face anytime he was in the hospital.Whether it was a parent or close relative everytime Baby Giovanni opened his big blue eyes, there was a loving face to greet him.
But what do you do if you are a single parent? You want to be there for your child everyday, but what about working to cover the cost of their hospital stay and health insurance that is provided by your employer? Two parent families have that second person for support but what do you do when your the only support person? And what if there is more than one child? How do you care for the sick child without making the healthy child feel like an outcast?
I know that single parents have these "god like" qualities that make it just work sometimes but how? How do you sacrifice and choose between the two evils and how do you care for someone else who needs you more than you have ever needed anyone else?
And how do you do it if you have that second person?
I guess I should have titled this blog, Answer Ellie's Questions about Parenting.
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parents of children with cancer
I will share my experience related to your post - I realize everyone's story is unique so please bear with me......
We discovered that our 17 month old daughter had AML only 6 days after our second child was born. The weight of what was dropped on us is almost unexplainable, never mind the post-partum my wife was going through at the same time. We were fortunate enough to have a support system that was able to care for my son so that my daughter saw her mommy and daddy every single day while inpatient and outpatient. The sacrifices we made may seem desparate to some, but at the time was the best decision we had with the resources available to us. When you are forced into a situation like this, you go into survival mode and do whatever you need to do. Our son is now 17 months old and healthy and happy. We realize we were fortunate to have a support system - others are not so lucky.
I still worked (my wife quit her job) and I almost never missed a day of work, even through transplant out of state and I slept at the hospital every night my daughter did. Fund raisers and taking advantage of financial assistance programs through the hospital and our local community helped defer some of the costs not covered by health insurance.
My advice is to ask for help: ask for it, seek it and take it when available. There are many programs available and organizations willing to help. Sometimes you need to keep asking to find them. If you are part of a church - involve them. Our Church raised money to cover the cost of diapers, formula and baby food for our son during my daughters treatments. I am humbled by the participation of strangers during our fight.
Unfortunately, my daughter's cancer was too strong and she relapsed shortly after transplant. She passed away in my arms in her bed at home. Thinking back, I am not even sure how we got through each day (never mind the entire 15 months) but I would do it all again if I still had her here with me.
Many times, people have told us that we are amazing parents and I tell them "No, we are just parents who would do anything for their child" - wouldn't you?
For those reading this, consider yourself fortunate if all of your children are safe and healthy. Donate to local charities - they do help families, volunteer your time, deliver meals for your local church. Become a registered marrow donor, if you know someone who is pregnant - inform them about cord-blood donation. I could go on but the point here is everyone can do something even small things make a difference.
Because of the generosity of family, friends and complete strangers - my daughter had as much mommy and daddy time as was possible. I can tell you that I spent more time with my daughter in her last 15 months than most parents spend with their children in 5 years and the kindness of others helped achieve that.
Parenting
I have to start by saying I am extremely fortunate for my daughter's good Health. I do not have a clue what I would do if she was diagnosed with any kind of illness. I admire and feel inspired by parents like Michael & Christina. When I feel a bit overwhelmed with working full time, and being a mother to my baby girl, I always remind myself that I have it a lot easier than many others and I have it pretty good so far. I can not answer all of your questions, but I have been a mom for six months now; this is what I know and I am sure other mothers would agree with me. You love your child more than you love yourself. I love my daughter a million times more than I love myself. I never though I could love anyone the way I love her. It felt overwhelming in the beginning. I had a hard time with labor & delivery which ended with an emergency c-section. The aftermath of a c-section in one word “PAINFUL” because of all of this my baby had to stay in the hospital for a week while they sent me home on the third day. Leaving her in the hospital was the hardest thing I ever had to do (don’t forget I just had an emergency c-section, and leaving her was worst than that). With all the pain that remains after a c-section the next morning I was up by 7am took two buses to get to her and I stayed in the hospital until midnight almost never leaving her side. The nurses kept checking on me to make sure I had eaten something and used the bathroom. I did this everyday until she came home. Ellie, in a way you answered your own questions because no matter what the situation is when it comes to your child/children you do whatever it takes, you do what you have to do, and you find a way to make things happen. When it comes to your child/children no mountain is too high or hard to climb. Is it “God-like” qualities I guess it can seem that way, I think it is simply being a good parent and loving your child/children enough to do whatever it is that needs to be done. You asked: How do you sacrifice? I am not sure that is a question for a parent. Parenting is all about sacrifices but then again its not. Your child/children come first, other things before you became a parent doesn’t matter much anymore. I think to some it may seem like parents sacrifice a lot but to the parent, to me it is not a sacrifice at all because again I will do anything for my daughter without hesitation, without regret and with all the pure unconditional love. My favorite saying from DKMS is “Give the greatest gift of all, the gift of life.” Every time I read it I think of how much becoming a mother felt/feels like I was given the gift of life. For any other parent out there that feels the same way I do or anyone out there that can understand this, becoming a marrow donor can feel the same way. It just works the other way around instead of getting the gift of life you can give it to someone else and I am almost 100% sure it feels just as good and fulfilling. I hope this helps!
Jessica
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