Special Needs Spotlight: Lily

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Miggy: Delia, thank you so much for being here today and sharing your daughter Lily with us.  Lets start at the beginning. Can you take me back to the day you knew Lily would have a congenital heart disease? Was this at birth, during an ultra sound or sometime after she was born? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Delia: It happened at the first appointment with the doctor.  I was laying there and the poor technician couldn’t find a heart beat then she would, only to change her mind and say that it was my heart beat.  I was alarmed, but calm. Finally the doctor came into the room and started moving the little wand around and found the heart beat. She said, “Well we found it, it’s low, but we found it….You will need to follow up with a specialist.” That’s all she said.  She didn’t know anything and wouldn’t tell me anything.  She did say that otherwise the baby seemed just fine.  I was still calm after she told me. I think I was in a daze, I didn’t really understand what she meant.  Today I see Lily and I’m still in a daze.  I’m shocked at how much she has grown and defied the odds placed against her.  We’ve grown together.  I have learned to be accepting of help, that I alone can not do it all.  I have learned to not be so fearful of the unknown and to trust that God has plans for her.  That she will have a full and happy life.

Miggy: Could you explain Lily’s particular heart condition and how it affects her and your family’s day-to-day life?

Delia: If you were to see Lily today you wouldn’t know that she has a life threatening disease. She loves to laugh and play and run with her friends. She is independent and loves to say she is the boss! Lily was born with several complications. They are: Endio-Cardio Cusion Valve Defect, Sick Sinus Syndrome, Dextrocardia, Inverted AV Canal, Pulmonary Hypertension, and Sleep Apnea.  Lily spent nearly two months in the NICU, then we spent many, many nights in hospitals, countless doctors visits.  Keeping up with her medical needs was and still is a job in and of itself.  The first two years I couldn’t hardly hold on to a job.  I spent so much time and money on my daughter that I lost track of myself.  My life revolved around her and only her. Lily underwent her open heart surgery.  She was in the hospital on 06/23/2010 and wasn’t released until 07/20/2014.  Her surgery was only supposed to take about four hours, six hours later I finally was told she was headed to ICU.   As time went on, things became routine. Hospital stays every two to four months. Upper Respiratory Infections that never seemed to go away. I started getting assistance though SSI nursing hours.  Finally there was someone to help with medications, feedings, changing gauze, organizing all of her supplies.  It has been a blessing.  One I would trade in a heartbeat for my daughter to be healthy.  Until last month (Dec. 2014) she had not been able to eat solid foods well.  She would take bites of things but struggled to keep her food down and struggled to eat large portions.  Now she is eating good portions and has discovered the joy of carbs! I enrolled her in Dance for the first time last fall.  She was clearly behind her peers in gross motor skills, but learned and was able to participate in her dance recital.  She is back in dance this season, and I recently registered her for t-ball in the spring. This school year she started Pre-K and has LOVED it.  I want her to enjoy life. Although I can’t afford everything (who can?) I want her to try new things, create new memories and be as happy as she can be.

Miggy: What are the biggest worries you face for Lily?

Delia: I worry that I won’t be there when she needs me.  Perhaps that’s an irrational fear, after all she is my life. But I worry that the day will come when I can’t help her…when the ER is too far…it literally brings tears to my eyes knowing that she will one day go into cardiac arrest and I will be helpless to save her.  I’ve raised her like any other child, I didn’t want her growing up thinking that life would come easier to her because of her disability, or that rules don’t apply to her.  I am her advocate.  I ensure that the things that she needs are there for her.  Lily is a strong, resilient, and brave little girl.  But I can’t help but worry about the end, and pray that day doesn’t come any time soon.

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?

Delia: Although Lily does ask me questions about other people with disabilities like prosthetic limbs, she doesn’t seem to think of herself as having a disability.  She knows that not everyone has a g-tube. Or a Bi-PAP machine with oxygen tanks but she is always very curious about others.  Lily doesn’t seem to be overly bothered by people asking her about her “special features” like the g-tube.  In fact her teacher called to tell me that Lily had shown the class her g-tube and explained what she used it for.  Lily is far more obsessed with having a dad. Once a year or so ago, she said: “mommy I want a daddy…can we go to the store and buy one?” I told her I didn’t know where that store was.  Yesterday she got off the school bus, and instantly started saying she wanted a daddy and if we could get one…I told her no, they are too much trouble! The bus driver laughed and laughed at our conversation. I just shake my head.

Miggy: How can people best approach or respond to Lily and the rest of your family? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Delia: In general I think that people forget that disabled or not she is just a child.  All small children are just that children.  They hurt, they get cranky, they are loud, and they are just doing all they can to survive and enjoy as much of this life that they can.  I can’t stress the importance of not jumping to conclusions.  It would seem that so many people see Lily and assume that she is fine. She doesn’t have anything connected to her at all times and her disability doesn’t affect her physical appearance.  She’s articulate and hyper, so what’s wrong with her? There is a slogan for cancer patients that says: Just because I don’t look sick doesn’t mean I’m not. It’s true for so many children and adults.  If I’m over protective or over concerned with her actions it’s because I’m looking for signs: of fatigue, loss of oxygen.

Miggy: If you could say something to the mom who just starting on this journey of congenital heart conditions, what would you say?   What would you say to yourself if you could go back in time?   

Delia: I’d say take it one day at a time, enjoy and embrace the little victories.  Life is so precious and short.  This last year has been a struggle.  I keep my focus on God, and on Lily.  I know that there are darker times ahead, and I just need to hold on to the light I do have today.  Some days are going to be rough, so rough you won’t be able to stop crying or to want to get out of bed.  Talk about it.  Talk to your family, friends, and let it out.  It’s not about being rational, or logical, none of this is rational or logical.  It’s about finding your peace with it.  Accepting it, because it isn’t going away. Loving yourself.  I have forgotten about me too many times.  If I hadn’t started receiving home health care I would have lost my mind years ago.

Miggy: What is the biggest lesson you’ve learned since becoming Lily’s mom?

Delia: I’ve learned that Life is not a guarantee.  Today is just as precious as tomorrow and there is little that you can do to change the outcome of yesterday.  I’ve learned that I am not as strong alone as I am with those around me who love me and care about both Lily and I.

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“Today is just as precious as tomorrow and there is little that you can do to change the outcome of yesterday.”  I love that.  So, so true.  The ever present now is so important.  And I had to laugh out loud when you said that husbands are too much trouble while the bus driver laughed and laughed.  Kids!  And once again you reminded us to try our very hardest not to judge anyone really, but especially parents and their children.  We just never have any idea what’s really going on behind the scenes.  Thanks so much Delia and giant hugs to you and your beautiful Lily.  

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com!  If you already emailed me and didn’t hear back, send me a quick reminder…sometimes that happens.  

Have a fantastic weekend!