The Miracle Project – Jennifer & Colleen

My name is Jennifer Lounsbury. I am a 31-year-old graphic designer, who also has a passion for photography. Jonathan, Colleen and I call home just outside Syracuse, NY, United States. Colleen is our only child! You can read my blog at www.timetobuildcastles.com and find me on Instagram @jennylouns.

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Welcome Jennifer & Colleen

Natalie: How did your journey begin with Colleen? (what was going on through your mind and heart during this time) 

Jennifer: I had a completely uneventful pregnancy. Everything was normal, and every sonogram showed that Colleen was healthy. I don’t think anything could have prepared me for her birth. You go in with a plan, and then suddenly, everything goes terribly wrong. After a gruelling 22-hour labour, Colleen was born at 9:11PM on October 30, 2011.

My heart sank when she was born, as it was completely silent and I expected the absolute worst. She was eventually taken away and I got to see her before they transferred her to a neighbouring city’s NICU.

It was supposed to have been just to make sure her lungs were okay, but we received a phone call in the middle of the night that she needed an emergency blood transfusion and that she had 2 seizures. It was absolutely devastating. She finally got to leave the NICU on November 19th, but no one was able to tell us what to expect. Only that she needed these seizure medications and a heart med (her heart rate had spiked a couple of times, so this was to help strengthen her heart).

Natalie: What is the name of the condition(s) that Colleen has? Can you share with us a little more about it?

 Jennifer: Colleen has epilepsy, cerebral palsy, microcephaly and bilateral hearing loss. Colleen’s epilepsy has changed throughout the years in that when she was first born, she only had 1 seizure after her NICU release.

Over the past year, they have increased in frequency. She also has level 2 cerebral palsy. She can crawl and walk with a walker but she has low muscle tone and spasticity (this is where certain muscles are continuously contracted). Colleen has this in her legs and wears AFO’s to help. The microcephaly means that her brain is slightly smaller than normal. This is likely because she has scar tissue on her brain from her birth injury.

 

Natalie: What are some words to describe Colleen? What do you love about her?

 Jennifer: Colleen is my heart. I have a tattoo that I got for her that in Gaelic means “my heart’s blood.” She is feisty, full of energy, and has a bright determination with everything she does. Despite all that she’s been through, there is always a smile on her face, and she is so loved by all. She will give you the most amazing hugs, but I also think that the quote from Shakespeare’s  A Midsummer Night’s Dream perfectly describes her;

“and though she be but little, she is fierce.”

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Natalie: What are your worries and wished for Colleen?

 Jennifer: Colleen is 100% reliant on her dad and me for her care and needs. I worry about her, as she gets older, and not being able to communicate her needs to us. Right now, we can just intuitively guess. I can just hope that some sort of communication device is available for her. I want her to have the best life she can, so we try to take her to get the best care we can. It’s so important to have doctors in our life that are willing to talk with us and make decisions.

 

Natalie: I’m passionate about the special need and self care connection. Raising a child with a medical condition or diagnosis can bring some big challenges, how do you cope? Are there any self care practices that helped you on your journey?

Jennifer: When Colleen was first born, there was a lot of guilt and depression, and even mourning for the life I thought Colleen deserved. It’s so hard to see your child struggle, but through that, you see their absolute strength and happiness. I, admittedly, didn’t care for myself as much as I needed to in the beginning. But now, I have committed to daily exercise and eating well. Exercise is such a great stress reliever. Please, also find someone you can talk to. I am excellent and bottling things up and not speaking about it. When you can find someone to talk to, it can lift a great weight off your shoulders.

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Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?

Jennifer: First of all, breathe. Cry if you need to. (I know I did!) Then, seek to learn everything you can. I found the more I learned, the more I wanted to advocate and teach others about my daughter. The more I learned, the more I found things in which I could better help her. She has some amazing teachers and therapists, but sometimes, there’s even more you can learn beyond that. Also, if you can connect with another parent who has been through a similar situation, they can provide you with great information.

I’m not sure how everything works in other countries, but we were able to get Colleen started immediately with therapies. These therapies have been amazingly beneficial. It’s been easy for us to make sure she’s getting all she needs, but I know in some school districts, it’s not as easy. Having that support will help you ensure your child had their best advocate behind them.

Natalie: What are some lessons and blessings you have learnt since becoming Colleens mum?

Jennifer:  I used to say I was the most patient person, but after Colleen’s traumatic birth, I was very angry with the world, and therefore, a lot less patient. It’s taken me a while, but I’m learning that things are so much better when you take a relaxed approach. There’s no need to be rushing all the time. It only causes undue stress. Blessings, hands down, have been all the people who have come into our lives and the people who love Colleen just as much as we do. A few months ago, we were able to raise enough money to get Colleen stem cell therapy and we plan on going back. All those people who came together to support her and us.. I couldn’t be more thankful.

 

Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?

Jennifer: Brain injury survivors: you can do the impossible because you’ve been through the unimaginable. (This was just attributed to Wendi, brain injury survivor) and last:

“Some people survive and talk about it. Some people survive and go silent. Some people survive and create. Everyone deals with unimaginable pain in their own way, and everyone is entitles to that, without judgement. So the next time you look at someone’s life covetously, remember…you may not want to endure what they are enduring right now, at this moment, whilst they sit so quietly before you, looking like a calm ocean on a sunny day. Remember how vast the ocean’s boundaries are. Whilst somewhere the water is calm, in another place in the very same ocean, there is a colossal storm.”

– People survive in Different Ways {Nikita Gill}

 

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If you would like to share your miracle moments and special needs journey, please get in touch here. 

#themiracleproject “Uniting our stories across the globe”.

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