Monday, August 17, 2015

From the Caregivers Perspective ~ Stanford MedX 2015

Less than 6 weeks til Stanford MedX! What an exciting adventure! So many wonderful things will be taking place! An event where healthcare and technology merge together in a display of how we as patients, caregivers and medical professionals can better improve patient experience and outcomes.

I'm a caregiver, but I'm also a patient thanks to that job of care giving. I come to MedX seeking to relate the two worlds, and how we can improve the lives of the family and friends we care for as well as our own lives as caregivers.

I'm a pediatric caregiver, which is a very special sub sect of the caregiver role. I'm the caregiver, but I'm also the parent. I'm the cook, the maid, the nurse. I'm her medical coordinator. I spend countless hours scheduling appointments with doctors and case managers.

With all that I do to just "keep her alive", it can easily be seen how I myself became the patient, in the form of mental illness.

So what can I bring to MedX? What can MedX teach me? I am so excited to find out. I'm looking forward to the Ignite! talks and speakers. I am so very excited to meet Dr. Larry Chu, and thank him for this wonderful opportunity!

I plan to come at each and every discussion from direction of the caregiver and how it associates to my role as caregiver, and also my role as patient. I will especially look to how we can relate this to the world of pediatrics.

In my workshop, I plan to discuss how we as caregivers, parents, and medical professionals can have easy access to data on our patients, whether they be lab results, radiological reports, and anything pertinent to the daily care of the individual. By allowing caregivers, and patients access to their own data, we can encourage active participation in health care, and have better outcomes as a result. eHealth is the future of all aspects of health care, and it is a vital necessity for medically complex children.

Medicine X is just the place to do this. I am so excited to have been chosen as a delegate this year. I have spent the last few years working to change the world of medically complex children, with special emphasis on children born with Heterotaxy Syndrome and Complex Congenital Heart Defects.

I also want to bring the issue of mental health as a caregiver to the forefront at MedX. So many of my fellow delegates not only have chronic health issues, but most of us suffer from some kind of mental health issue. Be it depression, anxiety, or the like, we all have been through the mental and emotional trials our condition or our loved ones condition has brought upon us. It is time to stop the stigma and embrace mental health.

I cannot wait to meet my fellow warriors at MedX. Together we will merge health care, social media, and technology into the best year for MedX yet!

I close with my utmost favorite quote that describes this band of warriors known as MedX delegates and Alumni.....

"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." ~ Khalil Gibran


Friday, August 7, 2015

The Sibling

I've been reading a lot on the sibling of the special needs child. I think the sibling of the special needs child is often overlooked. And while I am ashamed to say it, I feel like I myself have done this.

We get so wrapped up, so into everything we do to keep our special needs kiddo alive, that we just assume the sibling is okay. They may be like my youngest, they have their moments of breakdowns, but you figure they will grow out of it. And then, in the blink of an eye they are 7, and that breakdown they are having is not appropriate for a 7 year old. In fact, much of their behavior is quite scary.

Here comes the guilt. Mommy guilt. I ignored her, I abandoned her.

I began noticing that Aria's behavior became much worse in the last two years. Ever since I began to travel to take care of Alexandra. The intense thumb sucking at all hours of the day. the breakdowns, the hitting, spitting. I almost decided to not travel anymore. Then that created more guilt that I wasn't doing enough to ensure Alexandra's survival. Fact of the matter is, Alexandra is not going to get any better, she is only going to get worse. My need to care for Alexandra is only going to grow. How can I choose between my children? Aria throws guilt and hate at me constantly. She says I love Alexandra more than her. Of course none of this is true. None of it at all. But one child does require more attention than the other. It is just the way it is.

So now, after realizing that Aria has become prone to panic attacks, OCD moments, and possibly, SPD, she will be evaluated for these behaviors in early September. I feel like the most gigantic failure in the history of failures.

I have failed my oldest child because I can't find anyone who will give her a transplant. I am exhausted from doing the daily coordination of everything that comes with managing her, working part time, and going to school that I can't help her do her homework because I just don't have the mental ability to sit and fight with her on it because the fight of just keeping her alive is overwhelming.

I have failed my youngest child by not attempting to get her help earlier. I repeatedly have asked her to be quiet or give me a minute before attending to her needs because I was busy attending to her sisters needs. I have constantly asked her to take a backseat to her sister. I have consciously, and unconsciously put her behind her sister. Why? Because no matter what I figured she would be at my side. And because I put every single ounce of my sanity, my strength, my will, my time, my own soul into Alexandra because nothing matters unless she lives. Without Alexandra, I am nothing. Every bit of strength and fortitude comes from this battle with Heterotaxy/CHD/Abernethy. All the knowledge, every breath I take is made for Alexandra. Its almost as if she stops breathing, I stop breathing. I gave her my own will to live because nothing else matters except for her survival.

So I had nothing left to give Aria. Its the truth. I had nothing left to give. I didn't hold her like I held Alexandra. I didn't talk and spend time with Aria. Because I had to quickly get Aria taken care of so that I could attend to Alexandra's care because it was much more time consuming.

So whats the moral of the story? What piece of advice can I give you? Your child without special needs is actually more in need of you than the one with special needs. The special needs child is resilient, strong, they have been through tremendous things that give them their fortitude. The sibling has been left behind. The sibling has been pushed aside. And while you may think you are doing a fine job of ensuring the non special needs child is getting their needs met, you aren't. I guarantee you aren't. I know its daunting. I know its sad. But it is the reality of the world we live in. Its the reality of the family with a child with special needs. But what occurs is, the entire family becomes special needs. And that's what we ignore.

Be aware of your other children without special needs. Don't let yourself become like me and awake up one day and realize this is what is happening. Get help. Don't be afraid of the stigma. You are living an extraordinary life. This is not normal. Don't try and make it normal. You will kill yourself trying to make it be normal. I know, because I've tried.

As always friends, take care of you.

Danielle