Friday, July 18, 2014

Special Needs Spotlight || Charlie and Ingrid


 

Hi there, my name is Trisha, I live in charming St. Paul, Minnesota. I’ve been happily married to Kent for 9 years now, and humorously parenting Ingrid and Charlie for almost six years.  My children came into the world unexpectedly early, and my sweet Ingrid left this world unexpectedly early a little over a year ago.  The gift of their challenging lives has pushed us to see that the greatest gift the world can give you is the life you didn’t expect.
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Miggy:  Hello Trisha.  Thank you so much for participating in our spotlight today.  I appreciate so much your willingness to share your beautiful family and story with us.  You had twins born as micro-preemies, can you take us back to the day they were born?  Was everything a complete surprise or was there some preparation for what you were about to experience?  And what did you experience?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now? 

Trisha:  I was teaching kindergarten at the time the kids were born. We had some issues getting pregnant, but after one round of IUI, we found ourselves preggers with twins. I had a totally boring and normal pregnancy, so when I went into labor during my students rest time at 24 weeks gestation, no one was more surprised than me. My husband met me at home and we drove 5 miles to the hospital, where the babies were delivered within the hour. I remember waking up from surgery and asking if I was still pregnant, I remember how pale and relieved Kent looked when he saw me, he was not allowed in the room during the c-section, which we later realized was because my health was very compromised. I had a placental abruption, more common earlier in pregnancy, but happens often in pregnancy in multiples. Ingrid and Charlie weighed just over a 1 pound each. I remember the first days well, but remember the rest of their 4 month stay in feelings; hope, desperation, fear, anger, calm, rage, contentment. I did not return to work, I lived at the hospital, kent would come everyday on his lunch break. I never counted the number of surgeries while in the NICU, but I know it was over 10. Nicu doctors say the babies will tell you what they are capable of; and every time one of the kids came back from surgery and kept trucking, we hopped on for the ride. Having micro-preemies forces you to face your child’s mortality in very concrete ways. Everything that happens those first months is life-saving, and then transitions to quality of life saving. I sat next to my 1 pound babies and thought about their funerals if they were not able to make it. It felt beyond sad, but shockingly normal in the NICU. When Ingrid passed last year it was a complete shock. In my heart I’ve always known that it was very possible that I would be faced with losing them, but I choose to think that I honor her by listening to her and respecting that she was ready to be done with what prematurity was asking of her body and spirit. 

Miggy:  Preemies, like so many conditions can have a wide range of how each child is affected.  Can you tell us how each of your children was affected?  What were some of their needs both as babies and as they grew older?  

Trisha:  There are five common issues micro-preemies face involving the: heart, lung, brain, intestines, and eyes. Ingrid and Charlie each faced all of them, some resolved through surgery, some 
through medicine, some with time. The kids both came home on a nasal cannula for oxygen, special feeding guidelines, and basically not allowed to leave home unless to see the doctor.  Post NICU the diagnoses are Cerebral Palsy, Hydrocephalus, Developmental Delay and Retinopathy of Prematurity (ROP). Ingrid had a more involved case of CP; she was unable to walk without a walker and assistance, Charlie is able to walk independently with a walker. Ingrid had a more complex case of hydrocephalus, resulting in many  shunt revisions her first year, but stable. Charlie has had one revision complicated by an infection, but one revision none the less. They each had eye surgeries, and glasses (which they both look ridiculously cute in). Charlie also has epilepsy, controlled with meds. They both participated in our districts birth-3 program and attended the early childhood special ed preschool. At times their needs seemed insurmountable and relentless, I often wondered how in the hell the doctors thought we could manage all this, but we did, with our heads down, we plowed through.

Miggy:  Your daughter Ingrid passed away a little over a year ago.  From what I understand despite her medical issues this was a shock to your family.  Is there something you'd like to share about her passing that may be helpful for others to know?  Like were there any warning signs that were only evident in hindsight?  Or perhaps something you've learned in dealing with your grief?  

Trisha:  Ingrid passed away from her first seizure.  It started while she was sleeping, we have no way of knowing how long she was seizing.  She had a major orthopedic surgery 5 weeks prior and had healed like a champ. Charlie had had a seizure the year prior and we got him on meds and it was all controlled; Ingrid had never showed signs.  We found her seizing when we went to get her up that morning.  She was rushed to the hospital, put in a medically induced coma and never woke up.  Her brain swelled and liver was shutting down quickly.  We made the decision to let her have peace. 
The first phrase Ingrid ever put together was “all done”.  She loved being at home with just her family, anything outside of that she wanted “all done”.  Kent and I both felt like she was telling us that she was all done, done with shunt revisions, done with plates and screws in her bones, done with watching other kids run by, done with endless doctor appointments. We will never stop having a relationship with Ingrid, she was a wild spirit, now able to run free.


Miggy: Tell us about your Ingrid.  What was she like?  Do you have a favorite memory?  

Trisha:  Ingrid had a huge spirit that was undeniable to anyone who met her. I used to say to her, “Where did you come from?” Her capacity for love, compassion, and empathy amazed us daily. She was hilarious, silly, affectionate, and demanding. She was crystal clear on what she wanted, and what she didn’t have time for; she wasn’t the biggest fan of the academic time in school, more interested in friends. She was so happy to be with family and friends, hated going to bed for fear she would be missing a party.  

I could never choose a favorite memory, but I can still feel her hug. Her armed draped around me patting my back, head on my shoulder, warm breath on my neck. I can go there in an instant.


Miggy: Like many parents who lose a child you also have another living child to consider who was also born a micro preemie.  What are the biggest worries you face for your son?  
Trisha:  The biggest worry we face for Charlie is that we could lose him in the same way we lost Ingrid. I don’t know If I’ll ever hear him call me Mom, say his own name, or read. I hold onto what he can share with me, and in each moment that has to be enough. When Charlie had his first seizure, I was shattered. How was I going to navigate this? How can I protect him? I love the author Anne Lamott, her words seem to come into my life at the right moments. I was reading a review of her new book at the time, Help, Thanks, Wow. I came across this quote and my soul found relief. “There’s freedom in hitting bottom, in seeing that you won’t be able to save or rescue your daughter, her spouse, your parents, your career, relief in admitting you’ve reached the place of great unknowing. This is where restoration can begin, because when you’re still in the state of trying to fix the unfixable, everything bad is engaged: the chatter of your mind, the tension of your physiology, all the trunks and wheel-ons you carry from the past. It’s exhausting, crazy-making.” Charlie’s first seizure felt like hitting bottom, I wasn’t expecting another diagnosis to add to his list. Reading these words brought into focus for me the terrifying beauty of parenthood; we can’t stop the bad stuff from happening. That’s not our job as parents, our job is to love and support them throughout the waves of their lives. There is so much I don’t know about Charlie’s future, all I can do is assure him that his Dad and I will always be there.

Miggy:  Now that your daughter has passed away, what is the best way people can approach you and your family about this?  Is there something you wish other people knew so as to be more sensitive/helpful as you and your family grieve the loss of your sweet Ingrid? 
   
Trisha:  The best advice I have in this area is to show up.  Grieving parents don’t need to hear that God has a plan or needed another angel.  They don’t need to hear that everything happens for a reason or that God doesn’t give you more than you can handle at a time.  Just show up.  Following a death, don’t put them in the position of having to ask for help or give you a job, they won’t.  Just show up.  A friend of mine from my book club made me a bag of amazing Jewish comfort food, dropped it off on my doorstep, we hugged and she left.  It was like a dab of salve on my wound.  Just show up.  The truth is that parents who lose a child are not the same after the loss.  They are a new version of themselves.  It takes them time to figure it out.  Again, just show up.  I have a few friends who consistently text me to check in.  One friend texts every month on the 27th, the day Ingrid passed.  This is showing up.


Miggy:  Trisha, you have walked a road that most hope never to go down.  From complications of having micro preemie twins to the death of a child.  What would you like others to know about your journey?  Is there something you've learned from all this that you hope the rest of us will take away?

Trisha:  I wish I had some profound answer.  I realized after Ingrid passed that I had never imagined my kids older than the age they were. I didn’t daydream about high school graduations, applying for college, weddings, grandbabies. Because of this, I never got distracted by a life I had imagined for them, I had no choice but to live each day with them in the moment, letting them reveal themselves to us in their own time.


Miggy:  Lastly is there anything else you'd like to share about your family--special needs, loss of a child, love, pressing forward?  


Trisha:  Well, I realize that our story may sound terrifying and like the last thing anyone would want to have happen in their family.  That’s true.  But I can tell you a little over a year out, there’s still laughter and joy to be found.  If in times of sorrow and turmoil, you can turn towards you partner or support system, and not away, you can make it through the darkest of  times.  And you might even laugh a little.


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I probably should have warned you all to have some tissues handy.  Trisha, that was beautiful.  I love so much of what you had to say--in particular I love your advice to "show up."  I know I could do this more often in general, asking people to "let me know if you need anything" is probably the least helpful thing to say or do.  The example of your friend dropping off food--yes the food itself was helpful and needed, but you described it as a healing balm.  It wasn't about the food, it was how the gesture made you feel.  Like you said, THAT is showing up.  I also appreciate that although your circumstances aren't what anyone would ever wish for, you know you can make it through the darkest of times. and that there is still joy and laughter ahead.  I know there is someone out there who needed to read that today.  On top of all of that, I loved reading about your children, and the love and joy that came despite the difficult circumstances. Thanks so much Trisha.  Much love to you and your family.  

Oh friends...wasn't that so great?  I love this work.  As always if you or someone you know would like to participate in the special needs spotlight please email me--or have your friend email me directly!--at thislittlemiggy at gmail dot com.

Have a great weekend!

13 comments:

  1. Anonymous9:01 AM

    Love that, Show Up. that would help tremendously. Thank you for sharing. You have a beautiful family.
    Christina, a fellow micro preemie momma

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  2. Anonymous11:58 AM

    You are doing a great job doing these spotlights...

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    1. Thank you. That means a lot to me.

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  3. Anonymous2:33 PM

    Wow. This is a Mom who honestly pays attention to the reality of good, the bad, and the ugly -- and who strengthens the good by doing so. And by her laughter. Her family is blessed to have her.

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  4. Anonymous3:06 PM

    I am so glad and feel so blessed to 'hear' this. I had just checked out a post on Mattie Stepanik when this popped up on my fb page. This was a real 'God-incidence', not coincidence. Thanks be.

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  5. Wept reading about Ingrid. What a dear little girl and what a gorgeous family. Thank you for sharing xxx

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  6. Anonymous8:29 AM

    I've been thinking a lot lately how kids with special needs...we all focus on the day to day problems which can be hard enough and then something happens and the rug is torn out from underneath you. I'm not in a place to compose my thoughts very coherently but I felt I had to share. I'm not a parent of special needs children, I'm a sibling. My parents have four kids. First was T, born with spina bifida, 35 years ago. A year later, they had E, born 3 months premature, weighing in at 2.3lbs. Luckily, after a rough first year, she is totally fine - no health issues at all. then me (im fine too!). then J who is autistic/developmentally disabled. E and I have both moved out of my parents house, but until recently, my parents had T and J living with them, as well as my maternal grandmother who had developed COPD (on oxygen 24/7, unable to walk anymore). 6 weeks ago my grandmother gave up the fight. she died with hospice care at home, and as horrible as it may sound, we were all devastated but 'ok', knowing that she is at peace now. T and grandma spent every day together for the last three years, they were insanely close. So when T seemed out of it for a while we attributed it to her sadness. To be honest, despite her spinda bifida, we never thought of her as having special needs. Sure, she was in a wheelchair, but she could take care of her self. Grandma and J always need more assistance. Finally, a few days after grandma's funeral we convince T to go to the doctor. Turns out, she had a bed sore on the bottom of her foot (which she couldnt feel or see) that got infected. A week after the funeral, my sister is in the same ICU room as my grandmother had been, recovering from having her foot and part of her leg amputated. There was a fear that the infection had spread. I was there with her and she looked so much better and felt better and was joking that "we were all crazy for making a big deal because she didnt use that leg anyway". A week later, she is intubated and sedated after the last procedure they had done, trying to see how much the infection had spread. They next day they tell us it has spread to her brain (attacked the shunt she had put in as a baby due to hydrocephalus). We took her off the machines and she died a few hours before my moms birthday. Although doctors have said to us back when she was born, with her conditions, in 1978, that she would live to se 35, they would have thought we were crazy. unfortunately, we didnt live like that. we had no idea something so stupid could take our T from us. The guilt that we feel for paying so much attention to the health and needs of grandma and not realizing that T was falling ill.... I don't know what my message is supposed to be here. and I guess whatever I could possibly say, many of you know. Don't take anything for granted is the obvious one, but we always lived that way too. We always talked about how lucky we were to have dodged so many serious problems. Sure, T couldnt walk, but she was mentally fine and had no other health problems, and J is also physically healthy and mostly happy kid.....we always said 'it could be worse'. I'm rambling now but this is still fresh and this spotlight struck a chord with me. Also, maybe some of your readers have any advice for explaining death to special needs kids? my poor brother is doing pretty ok, but he sometimes still asks when his sister and his grandmother are coming home....thanks for reading my rant - thanks for this site - go hug your kids/siblings/parents/friends/whoever everyone...

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    1. I'm so sorry to hear about your loss... I can see how this spotlight relates so much to your family and what you're going through. I wish I had some words that could help with the guilt or help explain death to your brother... but I don't. I'm glad you came here to write your thoughts and experience. Sometimes we just need to be heard. I have actually done a spotlight from a siblings perspective before--another one that also includes an unexpected death, perhaps that will also be of some help to you. Here it is: http://www.thislittlemiggy.com/2013/03/special-needs-spotlight-ethan-cade-and.html xo Miggy

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  7. First time here (visiting from Love That Max) and so glad that I came. What a beautiful family and inspiring words. I especially like the "show up" advice. I'm so sorry for the loss of Ingrid.

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  8. That was so beautiful. You could feel the love that Trisha has for her children in her words. Amazing.

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  9. This made me cry. Her perspective is beautiful. Thanks for sharing.

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  10. Julia8:38 PM

    Thank you so much for sharing. We just lost our 3 year old daughter suddenly and unexpectedly 2 months ago and I can't agree more with Trisha's advice to just show up. Trisha-I am so sorry for your loss❤️️

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