Friday, January 15, 2016

Special Needs Spotlight || June



Hi! We are the Nunley family from Baltimore, Maryland. I’m Kristy, my husband is Justin and our children are June (age 4), Rafe (age 2) and baby boy coming January 23rd!! As a family we love to travel, watch movies, eat at Chick-Fil-A and play with June’s seizure assistance dog, Penny. Our daughter June has special needs. Her main diagnoses include tuberous sclerosis, epilepsy, and developmental delay. Although these things affect her life on a daily basis, she never lets them hold her back. She is a curious, energetic, happy 4-year-old who loves giving hugs, playing on her iPad and eating marshmallows! As a special needs family, we are thrilled to be involved in increasing awareness of the day-to-day battles of these warrior kids. To learn more about us and June’s journey, catch us at www.thenunleys.blogspot.com.
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Miggy: Hi Kristy! Thank you for being here today and sharing your sweet daughter June with us and your journey as a special needs mom. In your email you said that June has suffered debilitating seizures since she was 4 months old. Can you take me back to the day you knew something was not right with June? How long did it take you to get a diagnosis (or diagnoses)? Do you remember and can you describe your immediate reaction? Can you compare those first thoughts and feelings with how you feel now?

Kristy: June had her first seizure at 4 months old. Prior to that, she was a perfectly healthy, typically-developing baby. We had gone through a normal pregnancy and delivery and were enjoying being first time parents to our sweet baby girl. It was such a sudden change. One day she was fine and the next, she couldn’t stop having seizures. We immediately took her to the hospital, then were put in an ambulance to a bigger hospital. What I remember most about that first day (and first few days and weeks) is the fear. Just, overwhelming fear. We kept asking ourselves, what is happening with our child? How is this possible? What does this mean for her and our family? No one had immediate answers. All we could do was try to treat her seizures as best as possible. It became an exhausting game of trial and error with different treatments and medications, multiple hospital stays, tests, surgeries and everything else that goes along with having a sick child.
It took about 18 months to finally get a proper diagnosis of tuberous sclerosis. At this point, after so much time spent simply treating symptoms of a disease we had no idea she had, we were so relieved to have a diagnosis. Not too much actually changed for June once we got the diagnosis, since there is no cure to TS. Mostly, we continue to manage her symptoms, but this time we have a little more information to go on.
Now that June is four years old, all of this has simply become our “normal.” Since June is our first child, we have never known anything different and in a lot of ways, we’re grateful for that. There are still days where we feel the fear and grief – mourning the life we thought and hoped she would have and fearing for what lies ahead. But, for the most part, that fear and sadness is swallowed up in the day to day joy she brings. We know that God has a plan for her and we are grateful to be a part of it!

Miggy: Will you please educate us about tuberous sclerosis and generalized epilepsy and explain how June’s needs affect your day-to-day life?  Do you feel like there are some common misconceptions about epilepsy that you'd like to clear up?

Kristy: Tuberous sclerosis is a rare genetic disease characterized by benign growths (called tubers) forming in the brain, eyes, heart and kidneys. In most people with TS, it is a genetic mutation unique to them, which is the case with June (no one else in our family has the gene). It is a fairly “new disease” in that most of the advancements and research for TS have taken place in the last 30 years. June is currently part of a clinical study through Harvard Medical School in hopes that we can learn more information and help future patients with TS.

June’s TS is considered severe and definitely affects our day-to-day life. With medication, we’ve been able to manage her seizures to a certain extent, but she still has around 3-4 seizures a week. Usually her seizures take place at night, so sleep is always difficult to find at our house.  Sometimes she has seizures during the day, so she wears a helmet to prevent injuring herself if she falls. She currently takes multiple medications that are administered in the morning and at night. We’ve become very disciplined at making sure she doesn’t miss a dose since that can bring on a seizure.
Because June is developmentally delayed (most of her abilities range between 12-24 months), safety is a huge issue for us. “June-proofing” our house has become an art form. We’ve removed many items of furniture (she loves to climb), use baby gates on all our stairs, door knob covers (so she can’t get into toilets or bedrooms), and never purchase toys or items with small parts (she mouths everything and sometimes chokes). She also uses an adaptive chair for eating and at-home therapies (we’ve had many incidents of climbing out, tipping over, etc.). Taking her to other people’s homes or other outings (like play dates to pool or park) are very rare for us. It’s also very rare for us to have anyone babysit June, since it takes someone who is very familiar with her habits and abilities to be able to care for her for an extended period of time (and we don’t have family close by). Even simple things, like walking outside to get into the car, can be difficult since June doesn’t understand the need for caution and often will try to run straight into the road. The best part of June’s day is that she goes to a special education pre-K program at our local elementary school 5 days a week in the afternoons. She receives physical, speech and occupational therapy, as well as specialized education, as part of her IEP (individualized education program). This has been SO helpful for June. She loves to go to school and interact with other kids with varying abilities.
What I’d most like to clear up about epilepsy is that it is so individual. I can’t tell you how many times someone has said to me, “oh, my cousin’s friend has seizures, but she grew out of them, so I’m sure your daughter will too.” Just because one person’s seizures manifest a certain or way or are treatable with medication or even go away on their own, it doesn’t mean anyone else’s will. Just like with anything else, we are all different and unique.



Miggy: What are the biggest worries you face for June? And on the flip side, what are your biggest hopes and dreams for June?

Kristy: There are immediate worries, like keeping June safe on a daily basis. But, the bigger worries are further away in the future. There are many scary questions we just can’t answer right now, like will she ever speak? (she is currently nonverbal) How will we take care of her as she grows bigger? Will other children be kind to her? What if something happens to us and her future is no longer secure? Will her health decline and require more hospitalizations?
Our biggest hope for June is to simply give her a life filled with happiness and purpose. We can’t know what her abilities and level of understanding will be, but we can find ways to give her independence and opportunities through different school options, therapy programs and activities geared towards special needs children. We hope one day she will talk. We hope she will learn to do some things for herself. But, more than that we just hope to keep her smiling!


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Kristy: To preface: June’s brain surgeries took place at NYU Hospital where (in the pediatric
intensive care unit) four patients share one room, only separated by curtains. Also, as a part of June’s brain surgeries, the surgeon places drainage tubing coming out of the incision site to prevent fluid building up. Throughout the recovery process in the hospital, June has to stay in the hospital bed 24 hours a day with her head wrapped, drainage tubing inserted, plus IVs and PICC line and all that jazz. As you can imagine, keeping an active toddler in a hospital bed for weeks at a time is incredibly difficult, especially with all those wire and cords. Because of her constant activity, sometimes her cords would get tangled and even the drainage tubing would get smooshed or pinched and end up leaking. One particular time, June was having fun jumping on the hospital bed (with me sitting in the bed with her) and when she landed on her back, the drainage tubing exploded all over me. I quickly pushed the call button. The nurse’s station answered and asked what I needed. I said, “Can you send in our nurse? June’s brain juice exploded again.”  I had to laugh at the reaction from the other patients and their families in our room (the other kids were not dealing with similar medical issues so they had no context for what I was referring to). C’est la vie!

Miggy: One of the main purposes of the special needs spotlight is simply education and awareness. With that being said, how can people best approach or respond to June? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Kristy: We love to answer questions about June and are grateful when curious people simply ask what they want to know. Kids are especially great at this. We’re not easily offended by people’s lack of knowledge about June’s specific needs because we don’t expect them to know or understand unless they’re living a very similar situation.
The best thing people can do is to treat June (and any other child with differing needs) like any other child. Ask the parent what the child likes, what the child doesn’t like, what funny things they’ve said or done lately. These are things all parents can answer easily, regardless of the child’s abilities. The more we find common ground, the more we relate to each other and increase our awareness of how similar our kids actually are.

Miggy: Are there some ideas you had about having a child with special needs that have since changed now that you actually have a daughter with special needs? Along the same lines, what is the biggest lesson you’ve learned since becoming June's mom?
Kristy: Since becoming special needs parents, we’ve learned so much about ourselves and how we want to live our life. We’ve learned that we can do hard things. We’ve learned how to celebrate small victories and let go of certain expectations. We’ve learned to stop comparing ourselves and our children to others because it isn’t fair to anyone involved and only serves to make us miserable. We’ve learned that laughing is always better than crying because crying leaves a dreadful headache. We’ve learned that sometimes miracles happen and sometimes they don’t, but every day is still worth living and loving with joy and gratitude.  And the biggest lesson we’ve learned is that we’ve got a kid who is so strong, so brave, and so incredibly full of life that knowing and loving her has changed us for the better in every facet of our life. She brings heaven to our home. Every family would be lucky to have a June.

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Kristy, that was amazing. What you said about your early memories along this journey being dominated by fear... I remember that feeling well. But of course it is absolutely amazing to watch that fear melt away (mostly) as we embrace medical unknowns and uncertain futures all for the here and now, the very real LOVE of our children, just as they are. To go from overwhelming fear to your last sentence, "Every family would be lucky to have a June." is the essence of this special needs parenting journey I think. Thanks for everything you shared both medically and personally, such valuable information! Good luck to you and your sweet family welcoming baby #3 anytime... third children are magic.

Thanks again to all you readers! I always appreciated your support and for allowing parents and others to share their stories. I've come to believe that listening is really expanding. Expanding our mind, our world our views. As always if you or someone you know would like to participate please email me at thislittlemiggy at gmail dot com.

Have a great weekend!
XO
Miggy


2 comments:

  1. I love this and as I scrolled down I recognized Justin, the dad. We went to law school together! Much love to your whole family. Robin Lunt

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  2. So much of this resonates with me! Especially the well meaning people who say "well my cousin, etc". Our eldest started seizing at 8 months old, it's so nice to read about other people's journey

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