Hey guys. You’re going to love today’s spotlight. As hard as it is finding out that your child has special needs, imagine how much harder it is not having a name for those needs. Which means you also lack a clear, long-term prognosis. I think children and families who fall under this umbrella of “multiple needs, yet unknown diagnosis” have even more on their shoulders than your typical special needs families. What I love about Chelsea’s spotlight is that while she doesn’t shy away from how difficult this journey sometimes is, the fierce love and joy she feels about being Bridger’s mama completely shines through. Please enjoy!
Hi, I’m Chelsea; wife to the most amazing, giving, and selfless husband, Cade, and momma to three beautiful children: Brecken (7) Braylee (4) and Bridger (15 months). We live in central Utah where Cade is a gun salesman and I am an elementary teacher for the Utah Online School and also run a new pillow business (www.facebook.com/thepillowpeeps) to help cover our mounting medical expenses. Bridger, our 15 month old, has an undiagnosed leukodystrophy, which is a central nervous system disorder that causes him to be floppy with low tone. He struggles to even hold his head up by himself. On top of that, he was born with cataracts on both eyes, profound hearing loss, and cyclical vomiting. He has had the Nissen surgery and also has a G-tube. This journey we have found ourselves on is one we never envisioned, but has changed our lives forever.
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Miggy: Thanks for being here today and sharing your family with us in the special needs spotlight. When did you first start to see signs that things weren’t “right” with your son Bridger? At what point did a doctor (or doctors) confirm your fears and do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Chelsea: We started noticing many red flags with Bridger as he grew. By the time he was four months old, the flags were so red, we knew there was something wrong. After seeing a pediatric neurologist at Primary Childen’s hospital, Bridger had some testing done, which included an MRI, an ABR, and blood work.
The ABR results were instant. As the audiologist told us Bridger had ‘profound’ hearing loss. This news left us numb and completely devastated. As for the MRI results, I received a call from the doctor with the results on February 14, 2014, while walking into the elementary school to help with my sons Valentine’s class party. I remember the doctor say, “I wish I was calling with good news, but I’m not. What we found is not what we wanted to see….” I felt my heart break into a million pieces as he explained the results.
Even now, the reality of Bridger’s disabilities can be daunting. My heart yearns for him to see clearly, hear perfectly, talk, crawl, walk, and do everything that a typical 15 month old should be doing. I still yearn to have a diagnosis of what leukodystrophy he has so we have a better idea what our future holds. Seeing how well adjusted and pleasant Bridger is, though, helps me to realize that his journey in life is going to be beautiful. I am so blessed to be along for the ride.
Miggy: Explain how your son’s needs affect your day-to-day life and your family on a whole?
Chelsea: Bridger requires constant 24 hour care. Between his 8 different doctors and 5 therapists, we are constantly juggling multiple therapy and doctor appointments. This takes up quite a bit of time and can be financially straining. We have tried so hard to find the balance between getting Bridger the help he needs while balancing our lives with two other children.
We continue to enjoy doing things together and want Bridger to experience all kinds of adventures. It takes a lot more time, packing, and thinking through every aspect of the activity and how we can make it work for Bridger, to include him in these outings as a family. Together, we have been able to experience theme parks, camping, boating, swimming, water parks, fishing and much more with our little Bridger.
Miggy: What are the biggest worries you face for Bridger?
Chelsea: My biggest worry is as he grows, that I won’t be able to have the physical strength to lift and care for him. I also worry about communication with Bridger. With his inability to hear and his floppiness it makes sign language difficult. I’m sure we will figure out a method to communicate with each other. Only time will tell…
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?
Chelsea: I completely believe that having a sense of humor is required with these special needs kids. One day in church Bridger, who laughs randomly, had a giggle fest. And he giggled and giggled for a good 10 minutes. It was the most inappropriate time for laughing, but it put many smiles on the faces of those around us. I wasn’t about to shush him. His giggles are too priceless.
Miggy: How can people best approach or respond to your son? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Chelsea: There is nothing more I’d rather talk about than my children. I thrive on people asking about Bridger and interacting with him. I’ll never forget the first time someone approached me and said, “Tell me about your son..” I about cried. It was so thoughtful and meant the world to me that someone would take the time to understand this precious little soul and his myriad of physical impairments.
Miggy: What is the biggest lesson you’ve learned since becoming Bridger’s mom?
Chelsea: I am continually learning lessons each and every day, both big and small. Most days I don’t feel worthy to be Bridger’s mom. He is so patient and accepting of his physical challenges. I never knew that even the tiniest of milestones or progress could steal my breath away and leave me in tears. I’ve also come to realize that no matter your challenges, never stop appreciating what is good in your life. When you look for the good, that’s what you’ll find.
I’ve learned I can do hard things. (one little example… being able to insert and remove a contact lens on an infant…I’m proud to say, I CAN DO THIS!) I’ve learned more medical information this past ten months about our eyes, ears, brain, stomachs, and such then most people will ever know in a lifetime. I know Bridger has come to this earth to teach me, my family, and many others, lessons that could be learned no other way. He is angelic, pure, and oh, so sweet! How blessed we are to have him in our home. I feel it such an honor and privilege to say, “I am Bridger’s mom!”
To keep up on our family check out our blog: www.cadeandchelsea.blogspot.com and also don’t hesitate to check our our pillow business at www.facebook.com/thepillowpeeps. Proceeds go to help pay Bridger’s medical expenses.
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Thanks again Chelsea. And can we all just give you a standing ovation for being able to put contacts on an infant!?! That’s amazing. I LOVE what you said near the end–“No matter your challenges, never stop appreciating what is good in your life.” Right? Brings tears to my eyes just thinking about it. And like you, I too have learned positivity from my daughter (and others with disabilities) as I have learned that she is completely comfortable in her own skin and does not feel sad about her disabilities. Our kiddos have an innate patiences with their bodies because they don’t see the limitations, they just are who they are. Thanks again for sharing your beautiful family with us today Chelsea. Much love to you and your kiddos!
You guys! Please help me spread the word about the spotlight! I’m always looking for families to spotlight, so please send some my way. However, one thing I ask is that you don’t email me with their information and ask me to email them. This never results in a spotlight when when I chase someone else down, pitch them about the spotlight and ask for their participation. If they hear about it from you–a trusted friend–and are interested enough to email me, then they are interested enough to actually participate. Does that make sense? Thanks again for all your love and support and for making this series so educational and amazing to be a part of.
XO
Migs
What a precious child. I love that he giggles. Maybe that's his of saying he's happy.
Another amazing mother. Chelsea, you are my new hero. Bridger is a real cutie pie. And a quick story for you Miggy. When my oldest daughter was 3 or 4 (she's now 34), she told everyone who would listen that she wanted to be a "dog trainer" for Halloween. Like you, I always made my kids' costumes, but I was stumped about this one. What does a dog trainer wear? I kept asking her. She kept saying, you know, Mommy, like at the fair. I couldn't remember seeing a dog trainer at the fair we had recently gone to. Finally, after weeks and weeks of grilling her (and trying to get her to pick another costume idea), her brother (aged 8) said, I think she means those girls with the pink skirts with a poodle on them and a ponytail. It turns out she thought that girls she had seen at the fair dressed up as 1950s girls were dog trainers! I still laugh when I see a little girl in that costume.
Hey Miggy, I just saw these on Pinterest and I thought they might be good for Lamp. Ugg makes tiny moccasins and boots that she could probably get on by herself too, but they're pretty expensive. Just a suggestion!!
http://www.dsw.com/kids+shoes/sperry+top-sider+intrepid+girls+infant+boat+shoe?prodId=292895&category=dsw12cat1360020&productRef=quickAddToBagFormTab&productRef=quickAddToBagFormTab
What a fun little guy! I wish there was some sort of thing, like a certain color ribbon, that parents with kids with special needs could tie on the stroller so that people knew it was ok to approach. Some people just don't want to explain stuff AGAIN…and some, like Chelsea, might like to connect. As a pediatric PT I'm always on the fence–I genuinely enjoy almost all kids, and would love to say hi and offer to carry a bag or something in an airport…but I always hesitate.