Friday, September 16, 2016

Special Needs Spotlight || Eli

Hi, I'm Leah, partner with the most amazing man Chris, and mama to two amazing littles (one who happens to have Cri du Chat (CdC) or 5p- Syndrome) and one crazy d-o-g. We live and love in Newfoundland Canada. Our family has inspired me to share the story of our unique experiences and to show that each and every person has the amazing potential to achieve whatever their heart desires and MORE. I'm excited to be here today to share our journey.

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Miggy: Welcome Leah. Thank you so much for being here today. Let’s start at the beginning, can you take me back to the day you knew something wasn't quite right with your son Eli? Was this before birth, immediately after, or sometime after that? How long did it take you to get a diagnosis and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?


Leah: When Eli was about 4 months old, we brought him to a doctor for a check up - just to see how much he weighed and how long he had gotten. While we were there we mentioned his high-pitched cry and how people would ask if there was a cat in the room when he was there. The doctor didn't think much of it but referred us to an ENT to get his vocal chords checked. We were fine with that and went on our way. When we got home, Chris and the kids went for a nap and I, of course, googled "High-pitch Cry" and Cri du Chat (5p-) Syndrome popped up over and over. As I read through the characteristics I knew in my heart that this is what Eli had. There had been a couple of occasions that Chris and I had wondered about Eli's development because he was our second child and we had already seen a child at 1 month, 2 months etc, but we just put it down to "kids develop differently". When Chris woke up from his nap, I shared the information with him and we both knew this is what our little guy had. The clincher for us was the single palmar crease on his right hand that is prevalent in Cri du Chat Syndrome (as well as Down Syndrome).

We were absolutely devastated when we first read about Cri du Chat Syndrome. The information online was depressing and scary and sad and no matter how much we researched we just couldn't find the good stories. The sweetness and plain perfection that we saw in our little guy was no where in the literature. Over time, this is what drove me to start writing my blog. To share the beauty of Cri du Chat Syndrome. It can be scary and sad but it can also be funny, sweet, loving, beautiful and perfect. We decided early on to choose happiness and focus on Eli and not his Cri du Chat diagnosis.

We were referred to a pediatrician fairly quickly and were in to get genetic testing within a couple of months. It wasn't a surprise when the results came back positive for Cri du Chat Syndrome. At that time what was difficult to hear was that Eli's deletion was fairly large. CdC is also known as 5p- Syndrome because it occurs when there is a deletion in the small arm of the 5th chromosome. In a small portion of cases this is hereditary but mostly it happens spontaneously. Hearing that Eli`s deletion was large, and that he would more than likely have many of the characteristics (and therefore difficulties) of Cri du Chat Syndrome, was a blow because we had started to bank on it being a small deletion. We again had to check ourselves and get back to that positive place of focusing on Eli and his potential instead of his diagnosis. In our case, Cri du Chat was a spontaneous occurrence which we now call our "spontaneous blessing".

When we look back on those first couple of months we can remember the raw, deep sadness because we had no idea at the time what Cri du Chat would mean for our precious boy. We didn't know that we would experience the biggest joys of our life seeing him develop in his own way. We made a choice early on to celebrate Eli and not focus on his diagnosis and that has really set the tone for those around us too. Eli is Eli - in all his awesome, perfect, loving silliness.

Here is the link to a couple of my blog posts: The first is "Diagnosis Day" which is a much more detailed account of our feelings around Eli's diagnosis and the second is "That Same Little Hand" which talks about Eli's Single Palmar Crease
http://www.truehearttribe.com/the-start/2016/1/14/diagnosis-day
http://bit.ly/2bhJXMd

Miggy: Can you explain how Eli’s needs affect your day-to-day life?

Leah: I don't feel that Eli's needs affect us very much now. They are just what we do, what we have grown into as a family. Eli is almost 2.5 and has started to crawl around everywhere. He is pulling himself up to stand and can climb up onto the couch! This leads to me running around after him all the time!

Eli does have some issues with chewing and swallowing so we are still spoon feeding him food that is pretty chopped up and more easy for him to manage. He is making strides in feeding himself softer things like bananas, sweet potatoes and berries. He can pick them up easily and loves to eat new food!

The biggest thing is that Eli can sometimes be really off with his sleep. He has slept through the nights but he very frequently wakes a number of times. Sometimes he can be put back to sleep easily, other times are a struggle. He has never had a consistent sleep schedule, even though we have tried every method available. It has improved 100% since the early days where it wouldn't be strange for him to sleep just an hour or two a night. Those days were tough and to say that my husband and I were zombies just getting through the day would be putting it mildly!!!

Having a child who is non-verbal definitely has its challenges as well. When Eli is sick or upset, he can't communicate what hurts or what is wrong and that can be absolutely heart wrenching as a mom. In day-to-day life, though, Eli has learned a handful of signs that have helped us understand him and relieved some of the frustration for him. We want to make sure that Eli can express himself in whatever way he is able. We are confident that he will learn to speak but will take any method available to us!

Eli goes to Physiotherapy, Occupational Therapy, Speech Therapy and Music Therapy right now and we just knit those into the family schedule for the week. We are so thankful for these early interventions and we have seen Eli come leaps and bounds over the past 2 years.
Miggy: What are the biggest worries you have for Eli? On the flip side, what are the hopes and dreams you have for him?

Leah: The biggest worry for me, and I'm sure all other parents of children with exceptionalities, is what will happen to him when we are gone. There are not many resources in our province for adults with exceptionalities and very little support. Both my husband and I are committed to creating the things that may not be already in place and we are already connected to a local group who are working hard at creating a L'Arche community here in Newfoundland. {From www.larche.ca:8080/en_CA: In L'Arche, people who have intellectual disabilities and those who come to assist share life and daytime activities together in family-like settings that are integrated into local neighbourhoods. L'Arche in Canada has nearly 200 homes and workshops or day programs. These are grouped into what L'Arche calls ''communities"}

My hopes and dreams are the same for both of my kids. I want my kids to know that they are loved and supported by us in whatever they choose to do. I want them to lead lives that are full of happiness and inspiration and to understand that there are ups and downs in life and that they get to choose their perspective at all times.


Miggy: How can people best approach or respond to your Eli? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Leah: I want people to know that Eli is just a little kid who laughs, loves and enjoys life. He may do things differently but that does not make his needs or wants any less than any other human.

I want people to ask me questions about Cri du Chat. We celebrate Eli's diagnosis. I am fiercely proud of every part of both my kids and Cri du Chat is just one little part of who Eli is. Understanding that we are all on this continuum of ability where we all have our own gifts and our own struggles is key. There is nothing "wrong" with someone who develops differently than the kid next to them, they are developing exactly as they should be. To avoid awkward or hurtful situations? Just be a decent human being and use words that celebrate someone instead of pitying or looking down on them.
Miggy: I know from firtthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your daughter and her relationship with Eli?

Leah: There is 20 months between our daughter and her little brother and to say she has loved him from the moment she knew about him is not a stretch. The very first words she put together in a sentence were directed at my growing belly, "Baby brudder, come out! Play me!!". When Eli was first diagnosed, one of my first feelings was deep sadness for Maeve and what she would miss out on having a brother with exceptionalities. In those first few weeks, though, she was the perfect example for us. Nothing had changed for her, Eli was still the same Eli he always was and she just kept on treating him the same. It was beautiful! Now I realize that she gains so much more in life having Eli - she will have the compassion and understanding that only came into my life much later. It will be her normal and all that beauty will surround her as she grows. Similarly, Eli is blessed to have Maeve. She is an adventurous, funny, caring little girl who loves hard and will no doubt bring out the best in him as he grows. She has come to Eli's Physio appointments on occasion and loved helping her brother stand up on his own. She also loved making friends with the other kids around, asking questions about their G-tubes or wheelchairs in a no-big-deal kind of way. Just a normal part of life for her and I am so thankful she will be more accepting and understanding because of it.


Miggy: If you could say something to a mom who is just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Leah: I would say what my friend at the time told me (she has a son with CP and was a huge example for me in those early days): "You will be okay." I may not believe myself right away but I know that I would cling to those words when I felt everything was falling away. I would also say that life is not over. Everything is still beautiful and more so because of this. Yes, life is different than you expected but it always is anyways. This will make you stronger and help you find your purpose and both of your kids will be the absolute joys of your life.

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

Leah: Oh my. I have learned SO MUCH from my little teacher, Eli. I think the biggest thing for me was understanding compassion and service. I always thought that I was a really compassionate person, but having Eli has opened me up to the crazy beauty in the lives of those with different abilities and exceptionalities. I knew nothing about this side of life and I am so thankful that I have made some lovely friends in the families I have connected with on this journey. I look forward to continuing to learn more!!

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Thank you so much Leah. First I love that you said you don't think his needs affect you that much--it's just what you've grown into, what you do. It's really true that a new normal sets in and for many of us, it's not big deal. Doing things a little different becomes not just normal, but endearing--something you embrace because these little things are who you are as a family, your identity. And your advice was spot on as well: "Life is not over... yes life is different than you expected, but it always is anyways." Right? Life is ALWAYS different than we expect. And this is just one of those things--so embrace it. Lastly, high fives for finding your sons diagnosis via Google. I too was the one who found Lamp's diagnosis via Google. And while some doctors seemed to look down on my Google MD tactics, I actually had one doctor encourage me. He said that as parents we can devote more time to researching for our child, then they can. I know that was not a great experience for you per se, but I think it's important to note that there are things we can do to empower ourselves as parents. Thanks again for sharing your story and your amazing son Eli with us. XO

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.

Have a great weekend!

XO
Miggy

1 comment:

  1. What a wonderful spotlight. It was expressed so beautifully, and her observation that "She was the perfect example for us. Nothing had changed for her." regarding Eli's big sister, is the true definition of unconditional love. God bless this beautiful family.

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