Each year, Nashelle Jewelry selects two recipients for the Nashelle Warrior Campaign. Nashelle Warriors are inspirational individuals from the Bend, Oregon community who are currently facing extenuating medical challenges. The campaign is designed to raise money to help support the recipient’s medical expenses. 100% of the net proceeds from the necklace are contributing to the family’s ongoing medical expenses. Baby Hudson Boeddeker is one of our 2017 Warrior Recipients, Hudson suffers from an extremely rare, terminal brain disorder called Lissencephaly. Today we want to highlight and honor his mother Melaine with a look into her daily life and inspirational perspective on raising Hudson.
1. What is your typical daily schedule like? What extra tasks and coordination do you do since having Hudson?
Hudson isn’t your typical baby. Babies do require a lot of attention, yes. With a normal baby, they get to a point where they can roll over, adjust themselves, grab their binky…the things as a parent you say stuff like “I can’t wait until you are able to fill in the blank. My Husband Kyle and I both work full-time. When we first went back to work, I worked a day from home, Kyle worked a day from home and family filled in the rest. Hudson can’t go to a daycare because he’s medically fragile. After months of getting the run around, we finally met with our case manager with the county who submitted our application for help with Hudson’s care. She said that because Hudson was an infant we wouldn’t qualify for too many hours. Our hope was that we would have financial support from the county and a certain amount of hours to help with the out of pocket expenses that caring for Hudson would take.
Hudson’s requires a great amount of care. Feedings every 3 hours via his G-tube, each taking roughly 45 minutes, and you have to prep the machine and wash after each feeding. Hudson is almost a year old and has low muscle tone. So he can’t keep his head up, roll over or sit up. He has acid reflux that if he isn’t positioned right he will aspirate, he can only lay flat about 45 minutes before his next feeding. If he has a fever of any kind he will have seizures. So we have oxygen and a pulse ox machine to track his heart rate and breathing levels. At night if Hudson gets himself into a position, most recently he likes to scoot himself off his specialized bed. So pretty regularly, 3-4 times a night we need to get up and adjust him because he can’t do it himself. He has 2 breathing treatments a day that last about 30 minutes long. Most recently Hudson was in the hospital because he had a viral infection. Hudson hasn’t had any vaccines because a lot of vaccines will drop his seizure threshold so we’ve held off. Even though those within our family didn’t get sick, we could have been carriers. Hudson’s immune system isn’t strong enough to fight these viruses off. After 2 days in the hospital we asked to take him home on oxygen. He remained on oxygen for a week before we started to ween him off. During all of this Hudson has started having infantile spasms, which is a version of infant seizures. He can have as many as 5 a day and can last as long as an hour. The only option to help with the seizures was steroids, but with that we would be trading one set of symptoms for another. That wasn’t an option for us. So they gave us Ativan to help, during the time that he had his virus, when we would give him Ativan he would stop breathing. As you can see Hudson needs around the clock care. These are the things we deal with daily.
After our application was submitted we started down the road of finding someone to come to our house and care for Hudson. We were told by our case manager that we could have someone from the county but they wouldn’t be trained nearly well enough for the medical needs that Hudson has. She actually said I wouldn’t suggest going that route. So we could hire someone of our choosing and that person would just need to pass a background check. Our hope was to have someone who could be at our house and just be with him. In January I was on Facebook and saw a message come up that was posted to a friends’ Facebook page. This girl Sarah was simply sharing that she wanted to get back into caring for kids. I messaged my friend asking about details and she said that I should reach out to her, so I did. I messaged Sarah asking if she wanted to chat. Via text I laid out our situation. I wanted her to know upfront what she would be dealing with, my thought was I didn’t want to get too far into the process and scare her off, so if she was still willing to meet even after I laid out our story then great! Once we finally met in person, my first question to her was “If something happens on your watch, which it will, how will that make you feel?” It’s very serious and can be life changing for a person. If Hudson were to pass under her care I wanted her to think about how that would make her feel. Her response was perfect, she said “I don’t know how I would feel because I’ve never dealt with anything like that. But I do know I want to be there for you guys and help” It was honest and real and I knew we had found Hudson’s caregiver. Sarah Alex joined our family in late January. Hudson was approved via the county for 80hrs of paid care, we would need to cover the rest. Sarah has been a perfect addition to our family and we are so thankful for her. There has been countless times that Kyle and I have said that we don’t know what we would do without her. She’s been a blessing. Hudson also has a nurse visit our house weekly, as well as occupational therapy visit weekly. When we aren’t at the doctor, or in the hospital or at Doernbecher we do have “normal” days. What we call our new normal. You adjust and adapt to make it work for you family.
2. How has caring for Hudson been different than caring for your first child, Hadley?
Caring for Hadley was your typical first time parent stuff. Feedings, acid reflux, sleep patterns and deprivation, teething, colds, crawling, potty training….the list goes on. All the things first time mommies share about and get advice on, giggle about, share funny stories. You live for your child’s laugh, and smile or what their first word will be, when will they take their first step! I’m currently planning Hudson’s 1st birthday celebration….and someone asked the question are you going to get him a cake that he can destroy and get all messy in… It literally broke my heart into pieces. I realized I won’t have that memory with him. Even though every day is very obvious how Hudson’s care is different than Hadley’s was, it’s the things you don’t think about that hurt the most. I ache whenever I’m around another baby that is Hudson’s age and am faced with what he can’t do. Hudson’s care consists of medications, machines and comfort care. I’m part of a support group on Facebook. It’s a place where families all over the world can share their experiences and questions, with no judgement, about their dealings with their kids and Lissencephaly. With this syndrome there are no two kiddos the same. The range of symptoms and abilities are wide. Even though we face Hudson’s challenges every day, compared to what Hadley was able to do, we also realize it could be worse. I could sit here and list all of the things Hudson can’t do, and some of the things he’ll never be able to do. I try my hardest to remind myself of the things he does do. His obsession with music and noises. Scout, the v-tech dog that goes everywhere with us, he loves that dog. It’s his best friend. You could try all day to get a smile out of Hudson, but no one can do it like Scout! I love how he watches Hadley…he loves watching her dance and sing. He coos. Kyle and I swear he communicates by saying “mmmmmm” over and over again. When he gets excited his legs kick and his arms start going! His cry, sometimes is the most pathetic thing you’ve ever heard but in the middle of the night it’s ear piercing! I know there are families out there that don’t get to experience the things we do. They don’t get the smiles and coos. So it’s those moments I choose to hold onto. Don’t get me wrong, I have days where I’m angry and wish I could have those moments. I would love nothing more than to have him crawling around and attempting to walk and babble… but if I live in that negative place for too long it gets increasingly hard to pull myself out.
3. What lessons have you learned from being Hudson’s mom?
I try not to take things too seriously anymore. I know that I have a choice to make the best out of the situation we have and make the most of Hudson’s life. I try harder to live in the moment. I let go of things I can’t control. If we were to lose Hudson I don’t want to look back with regret. I know now when something hard presents itself, or when Kyle and I have to make a choice about anything, that it will all work itself out. I truly believe that everything happens for a reason. When we were first told of Hudson’s diagnosis I remember thinking I can’t do this and questioning if I was strong enough. Hudson has brought out the best in me and shown me what I am capable of. He’s also made me look at life differently. It’s very easy to get caught up in the day to day expectations that you put on yourself and what others put on you. I’ve gotten my voice back through all of this. I don’t fear saying no or asking for help anymore.
4. What advice to you have for other mothers of terminally ill children?
That it’s OK to be angry. It’s OK to feel cheated. It’s OK to fear getting close. When you’re told that your child has a terminal illness you grieve what you imagined for your child. You don’t understand, and I don’t know if those feelings ever really go away. There are good days and bad days. And almost a year into Hudson’s life, we still deal with all of the above. You live in fear and on edge a lot of the days. But it’s also OK to feel blessed and realize that this miracle has entered your world for a reason. One of the things I tell myself is that I don’t want to regret anything when he passes. I want to enjoy and capture everything he can do, which isn’t a lot. But I’ve recorded his noises, captured his smile and how he communicates with his eyes. Life is busy, but allow yourself to just sit and be with your child, because someday you won’t have that opportunity.
Many people will try and relate, it’s also OK to tell them they have no idea what you live every day. Tell them! Tell them what you live, tell them your day to day. Share. Try and let go of what others think and their opinions. It doesn’t matter. All that matters is your family and what YOU NEED. Allow others to help, be vulnerable. You can’t do everything and it’s OK to admit that. I tell myself all of this daily. There is nothing “normal” about what we deal with, so don’t overthink it; but what it boils down to is that every emotion, thought, or feeling you have is normal. The last thing I’ll say is live. Make memories, don’t seclude yourself and your family. The gift our children have given us is a reminder of how short life is. Not everyone is given the gift of perspective and it’s okay to see that as a gift.
5. What would your perfect Mother’s Day agenda entail?
I feel like I’m supposed to say spending it with my children. My days are nuts, I juggle a lot. So If I’m being honest, 100% honest, I would say a day for me. Wake up, go for a run. The afternoon could be spent shopping and with a spa treatment, feeling pampered. Come home to a clean house. No “to do” list and no agenda at all! Then end the day with dinner out with my family and a movie snuggled up on the couch. Anything that is different than my crazy schedules during the week…something where I can just “breathe”.
6. What does the motto “Head Up. Heart Forward” mean to you?
My girlfriend Aimee gave me a gift shortly after Hudson was home from the NICU. It was a sign that said “Head Up Heart Forward” with arrows that had Hudson and Hadley written on them. When she gave it to me I thought wow, aren’t those words to live by. I didn’t realize that our family would lean on these words as much as we have. We needed them.
In the first 30 days of Hudson’s life, we thought we were going to lose him a number of times…little did we know what our life really had in store for us. When we were told that Hudson had an extremely rare illness that was in fact terminal, it was as if we were in a parallel universe. Your mind is filled with fear, doubt, panic, grief, anger, and confusion. And did I mention fear? Truth is, your brain goes into a form of protection mode which leaves you wandering about, wondering how in the hell this is all happening. It’s crazy to think that something can be so traumatic and painful that your mind simply can’t comprehend it. We had no idea that this would be the beginning of numerous traumatic experiences that would change who we were. Thinking clear is nearly impossible. We found ourselves at a crossroads very early on in Hudson’s life. We realized we had reached a “T” in the road, and we had no choice but to turn left or right. To the left you had a long lonely road filled with negativity and resentment. All the emotions that led to a very dark and bitter place. The other road was still long, and it was still lonely, but it looked a whole lot brighter than the road to the left.
Head Up, Heart Forward has been our way of staying positive, and doing what’s in our hearts. Most of us lead with what our head says because our brain gives us the ability to reason, to make responsible and practical decisions. Not nearly enough do people lead with their heart. Having your heart forward is living by what’s in your heart…by allowing yourself to listen to that tiny little voice that you can just barely hear in the back of your mind. It means to live with love, with positivity, and with the purpose.I like monogram necklace !