How Do I Survive This?

Borrowed from huffingtonpost.com

I am OVERWHELMED.  There is quite literally no other way to describe what I am feeling on a day-to-day basis.  It was one thing when I was trying to settle in to a new routine with our newborn and our two year-old, but now our family is coping with medical conditions in both boys.  Life is not simple for our family right now, but I am doing my best to keep it as simple and non-traumatic as possible.

For those of you who don’t know, our oldest has been having seizures.  I wrote a post about that when we first began that journey.  Now we have a definitive diagnosis of epilepsy and are trying to find the correct levels for his medications.  The pediatric neurologist told us that the goal at their clinic is two years seizure-free with medication and then beginning to wean.  This provides some hope of relief.  He continues to do quite well and no further diagnostic testing is required, at this time.

Our newest boy, however, is just at the very beginning of his medical journey.  Shortly after birth, he developed a hemangioma.  It is located on the left side of his head and continues to grow every day.  Because of its size and location, the specialist that the pediatrician consulted with wants to run diagnostics to help rule out a diagnosis of a condition known as PHACE.  Our little guy had an echocardiogram and it was found that he has a bifurcated valve in his aorta and slight coarctation (narrowing) of his aorta.  We will be doing an EKG and seeing a pediatric cardiologist near the end of the month.  He will also have an eye exam and a hearing exam to see if the hemangioma is impacting these areas of his body.  Eventually, we will have to do an MRI to see if the hemangioma is damaging his brain, but these other tests are helping to stave that off.

Aside from these issues, our children are quite healthy and happy.  Well, I imagine my newborn is happy…rather hard to tell 😉  Being only three weeks into my postpartum period is most definitely making things more difficult to cope with.  I work very hard to remain in the moment and to not get ahead of what we know, but having so many unknowns to contend with can make a person a little crazy.  There is so much to get done every day while still making sure to cut-loose and enjoy time with the kiddos, and sometimes I am not the person I want to be.  I imagine that on the other side of all of this, I and my husband will be stronger and our relationship will be deeper, but getting there is certainly nothing I ever imagined in my life.  I have had a number of terrible trials to overcome in my short lifetime, but they pale in comparison to worrying about your babies.

How do you cope when you feel like you can’t do anything to help your children?

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26 thoughts on “How Do I Survive This?

  1. Valerie says:

    I am so sorry your little sweethearts are having medical issues! 😦 Fear for the health of someone I love is no stranger to me, unfortunately. When my older son was younger, he had viral-induced asthma and it was terrifying! He would wake up in the middle of the night nearly unable to breath while wheezing, even though he’d gone to bed perfectly healthy. It was so, so scary! But yours is a different sort, with the unknowns you are facing. Big *hugs* to you. Are you in any sort of support group (online, perhaps?) fot either of your sons’ conditions? That is the BIGGEST thing you need right now – support – and those who are doing the same, or already have gone through it, could be wonderful for you. XO

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    • I have thought about seeking a support group(s), but then I get overwhelmed thinking about how that is one more thing to do. However, there might be other kids there, which would be good for Crazy Pants. Ha! That’s a great Internet name 😉

      Also, how did things work out with your husband? I assume he is OK?

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  2. Carolyn Harris says:

    Any advice you are given is going to come from a place of well wishes, but may not come with the experience of surviving through what you are going through. Take deep breaths and try to remain as much as possible in today. I educated myself as much as I could when dealing with my daughter’s disability and now my own. This is how I cope. I also enjoyed the moments bad and good with her as she grew up.

    However you decide to deal with this, remember that you are no good to your children if you wear yourself out trying to cope. You have a large loving, somewhat crazy family that will be there for you and pick up the slack when you need a break. Your husband and you are partners in this endeavor so treat each other as such.

    Love you,
    Carolyn

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  3. Vallery says:

    Sounds to me like you’re doing better than I did with two children and they didn’t even have heavy duty health issues. Hang in there, it sounds like you’re taking the correct path in your thinking even though it doesn’t seem to help right now. Your “And This Too Shall Pass” is right on. Thinking of you.

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  4. Oh honey that is a full on time for you. I’m so sorry to hear your boys aren’t well. Being worried about your kids is the worst feeling ever. Thinking of you and hope you only get good news moving forward! XO

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  5. I’m sorry your load is so heavy right now. Sounds like you are doing a good job keeping it one day at a time. know that you have a place to unload anytime. I will keep your babies in my thoughts. Love and light to you!

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  6. Be strong mama, and think positive. I hope I could give you advice but unfortunately I have no background on the matter. However I am following Emily Cook’s blog, Weak and Loved. She documented her daughter’s (Agggie) problems with seizures and medical treatments the little girl through. If you would like to take a look, here is her blog url. http://www.weakandloved.com
    Aggie has been seizure free since 2009. I hope you can find something to help answer some of your questions (although cases could be different). I will pray for you and your family. *hugs~

    I am pretty sure Emily would be more than glad to answer some of your questions if you wanna reach out to her. She is very kind.

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