2/5/18 Hero: “DJ”

Today’s #SameHereHero: “DJ” (Yet another topic that, now over two months in, we still haven’t touched on: the mental health of parents and family members when a child is born with special-needs and/or faces a serious health scare. I think back to my own family and my brother’s challenges and realize our focus – understandably so, was was always on him and his well-being. But the truth is, when someone you love faces difficult battles, for so many reasons – neglecting your own self-care, suppressing feelings, frustrations at the thought of how difficult things must be for them/how others treat them, and having to reframe a new concept a “normal day” – your own mental health takes a beating. DJ I know you’ve been considering whether to share this for some time – and I want to thank you on behalf of all those you will be helping, for your courage in doing so.)


“I am the oldest of three girls. I come from a traditional family – two parents, happily married, stay-at-home mom, and a dad who worked three jobs to keep a roof over our heads, food on the table and clothes on our backs. I had a lovely childhood with very little trauma except for the usual teenage angst. My mother lost her parents very early in her life, and she had some anxiety about dying young, so she tried to prepare me to take care of my sisters in case she did. She taught me to cook, clean, sew on a button, hem pants, etc., and so, at a young age, I kind of knew how to run a home. I think my organizational skills and need to control things (a bit OCD) began surfacing then.


Clearly, life gets more complicated as you get older, and so controlling things gets more difficult. Marriage and children add a new level of joy, exhaustion, love, fear, anxiety, etc.


There are no guarantees when you decide to start a family. We had a daughter and then three late-term miscarriages, for which the doctors couldn’t find an explanation. Our anxiety was through the roof as to what might go wrong during my next pregnancy. Unfortunately, we were proven right when, at 28 weeks, we were told that our daughter had a rare neurological disorder. But, it was a viable pregnancy and our Dina was born with a collapsed lung at 38 weeks. Then we were told she had hydrocephalus and needed a shunt inserted. It was a very exhausting and frightening time for my 5 year-old daughter, my husband and me.


After the initial shock and a few surgeries, we settled into a new ‘normal’which changed our entire idea of what our dreams and expectations of our family would be like.


It is an understatement to say that I was exhausted, frightened, anxious, situationally depressed and very stressed – but through it all – I had the support of family and friends, good doctors, therapists and somehow we found a way to live a somewhat ‘normal’life, despite a few bumps and more surgeries along the way.


I’m a glass-half-full, ‘when life throws you lemons, make lemonade’ kind of person, so despite all the difficulties of having a special-needs child, we had and have a great family life. We’ve gone tent camping on Martha’s Vineyard, taken multiple trips to Aruba, gone to Israel once all together, rented summer homes in Rehoboth, Delaware for many summers with friends – nothing stops us from living our lives to the fullest extent that we possibly can.


I have never felt hopeless or helpless – until the summer of 2010. Dina’s shunt once again malfunctioned and needed yet another revision. After her surgery, her recovery did not go as expected and her shunt became infected. She was in the Pediatric ICU from June 15-Aug 15 in one hospital and then we had her transferred to another hospital where she stayed until August 30. It felt like Murphy’s law of medicine.


It took almost two months after she came home for her to recover enough to go back to her school program. We had to feed her by nasogastric tube at night to help her regain the 12 pounds she had lost while in the hospital. We waited for her hair to grow back so she didn’t look like a walking corpse. She was covered in scars on her scalp and body; they needed to heal before she could be exposed to the general public. It was frightening to actually leave the hospital when she was released. Though we hated being there, it felt safe and there were people there to care for her if something happened. When we were back home, it was just us again, taking care of Dina as we always had.


Once Dina returned to school, I was finally able to take a breath, and the previous 3 1/2 months hit me like a ton of bricks. I withdrew from everyone and everything. As soon as I put Dina on the bus for school, I went back to sleep until she came home. I’d be awake all night, eating and on the computer, and gained about 20 pounds. I’d take care of the most basic things to keep our lives going but I neglected so many things. I could see it from a ‘distance’ but I couldn’t ‘feel’ anything and I didn’t have enough energy to do anything about it.


I felt this way from mid-October until March, when I realized that my family was disintegrating before my eyes. Bills were piling up, my house was falling apart, my parents and sisters were ‘annoyed’ at me for my inability to socialize, and my marriage was suffering. I felt like I was underwater and couldn’t break through the surface to catch my breath. I was in a dark abyss that I just couldn’t escape from and I had never felt like this before. I felt SO sad and SO angry and I knew that I needed help. I kept thinking I had PTSD, although, like many people, I associated PTSD with war and veterans.


I found a therapist, highly recommended by a friend, who happened to specialize in EMDR (a treatment for PTSD). I also began taking Wellbutrin, an anti-depressant. The combination of the two was extremely helpful and got me out of the dark hole.


Many people lived virtually through that summer with us via group emails. Everyone involved in Dina’s ongoing medical saga was extremely supportive and caring; however, once you’re out of the hospital, people think the crisis is over. This couldn’t be further from the reality of what happens after such a trying time.


There has been a lot of empathy over the years as I’ve told and retold this story. The truth is, unless you’ve lived through some type of medical crisis or ongoing condition with a loved one, you can’t REALLY understand.


Before Dina’s illness and hospitalization, I didn’t understand the need for anti-depressants, I had never heard of EMDR and I come from the ‘pick yourself up by your bootstraps and solve your own problems’ philosophy.


Believe it or not, there have been positive things that came out of this experience! It gave me a more compassionate view of the importance of mental health, and the therapies for those issues, many of which I’ve now read about here on this site, written by the brave people who have shared their own stories.


So #SameHere🤙...I get it, and I get/hear you all! I hope this has helped anyone with a special-needs child or a child with whom they’ve gone through a medical scare.”

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