Hello! We are the Boseman’s and are so excited to have the opportunity to share our experiences with you. My name is Tennille and my husband’s name is Cody. Together, we have the most precious, amazing son, named Jett… named appropriately after our fascination with aviation. Coincidentally, we call him our “Fighter Jett.” Our little family (and crazy dog) resides in Omaha, Nebraska where Cody is attending dental school at Creighton University. We plan to live here until 2015 and then will move back to Salt Lake City, UT, where we are from. We sure miss those mountains!
Our world flipped upside down about 15 months ago when Jett was born. After a perfect pregnancy, our little baby came into the world. The first words uttered out of my husband’s mouth was, “Doctor, is that a cleft lip I see?” Sure enough, our little guy was born with a cleft lip and palate. We were devastated just like any parent would be. How many surgeries is this going to take? What will others think of him? Why didn’t the ultrasounds notice this? Now looking back, this was a minor challenge/setback of what was to come and perhaps was placed there to prepare us for the worst. In the weeks to follow, Jett began to show signs of failure to thrive. He couldn’t breast feed and was losing weight. He didn’t cry or show signs that he may be hungry. He began to exhibit “jitteriness” in his arms and legs. Often we would try to hold and comfort him, but he would arch his back and stiffen up so much that we could barely contain him.
We didn’t want to face it, but something was wrong with our little boy. After numerous days in the hospital, a gazillion tests and MRI’s, and a new feeding tube, our doctor told us that Jett was born with a condition called Pontocerebellar Hypoplasia. His cerebellum and pons did not develop inside the womb. Children with this condition do not reach any developmental milestones and the prognosis is grim. We will have to say goodbye to our little Fighter Jett far too soon; most likely in the next one to five years.
You are welcome to follow us on our two blogs:
Miggy: Can you take me back to the day you knew when Jett was going to have special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Tennille: Our ultrasounds didn’t catch anything, so we were under the impression that we were having a healthy baby. When Jett was born, we were shocked to say the least. At the time, Cody was taking medical school classes and had just learned about possible syndromes associated with a cleft lip and palate. His mind was racing and I couldn’t wrap my mind around what had just happened. I had just had a baby! This was supposed to be the happiest time in our lives; yet, we were filled with worry and fear. For the next couple weeks, my time with Jett was priceless. I just felt that he was perfect. I came to accept the fact that he would undergo numerous surgeries throughout his life and I was onboard and ready to take on any challenges. However, my confidence waned a bit when he was admitted to the hospital at 7 weeks old for failure to thrive. Honestly, I felt like a failure as a mother. Why wasn’t my baby eating? Why wasn’t he gaining weight?
When the tests came back positive for Pontocerebellar Hypoplasia (Type 2), my world came crashing down. This was something that both Cody and I were not prepared for. Not only would our son be medically fragile for the rest of his life and dependent upon feeding tubes, but also the length of his life would be dramatically shortened.
Nowadays, I have good days and I still have bad days. My love for Jett has increased ten-fold, but sometimes feelings of grief and sorrow still creep in. I have learned that this is natural. We are human! We have to feel these emotions in order to allow ourselves to grow and to deal with the realities that we face.
Miggy: Explain how Jett’s specific special need affects your day-to-day life?
Tennille: I guess the easiest way to explain this is that I could probably do pretty well in nursing school! Things I never thought that I would be able to do have now become second nature. Jett requires medication at 8 different times throughout the day/night so I find myself watching the clock more closely. My daily routine now revolves around him, just like it would with any parent/child relationship. My plan, once Jett was born, was to return to work. I now stay home full-time to care for him. However, it is extremely important (for any parent) to have an outlet! During the week, I teach piano lessons to seven students, two dance classes, and a couple fitness classes. It feels good to be ME and is so important to my emotional health and overall well-being.
Jett’s medical needs require constant care. Therefore, we have private-duty nurses that come to our home every night. Cody and I are so grateful to have this service. We can sleep peacefully at night knowing that Jett is being taken care of. Plus, a full night’s sleep can work wonders for a person! Having sleep under my belt helps me function better during the day and also helps me think more logically, rather than emotionally (which a lack of sleep can affect negatively!)
Miggy: What are the biggest worries you face as Jett’s mom?
Tennille: Jett experiences more pain and distress than ANY child should ever have to endure. My biggest worry for him is that his whole life is one of pain and suffering. I worry that I won’t be able to show him the beautiful things in life. It literally breaks my heart sometimes.
I am grateful, however, that he will never have to see the evil things in this world. He is protected. He won’t have to deal with school bullies or peer pressure. He won’t have to experience heartache. I am comforted to know that Jett will only be surrounded by love for his entire life!
Miggy: Now for a lighter question, I'm a big believer in seeing the humor in life and learning to laugh even when times are tough. So have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Tennille: Oh my goodness, where do I begin? Cody and I troubleshoot Jett like he is a machine! “Okay, have we vented him?” “Did you press on his fart button? Yes? And no farts came out?”
When Jett is in discomfort, we literally go from head to toe to try and figure out what is hurting him. Most of the time this is in the middle of the grocery store and it ends with A LOT of stares! Especially because it usually ends with Cody tossing Jett up into the air about a hundred times and bouncing him around…. all the while Jett’s feeding tube is connected to his stomach, so he looks like a yo-yo being tossed to and fro. Yes, we get stares, and we don’t care! If Jett is happy bouncing around, gosh dang it, we are going to bounce him around.
Miggy: How can people best approach or respond to Jett? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Tennille: Yes! Please don’t assume you know what I’m going through because, I can assure you, you don’t know. Never say, “I know what you are going through.” Every situation is different. Every person grieves differently. People need to be aware that inside every special needs parent, is a grieving parent. We didn’t want this for our child. We have dealt with emotions so deep and dark that it literally hurts. We wanted a normal, healthy child just like everyone else. When that didn’t happen, we had to shift our focus and change our plans for the future. Please be sensitive to this.
Miggy: I try not to rank special needs on any scale of difficulty, but I can't help to think that a child who is either in a lot of pain and/or will most likely die young is definitely on the most difficult spectrum of this special needs scale. This type of trial could permanently crush a lot of people however, you seem so positive and upbeat--could you share with us how you manage to stay so positive, or what sort of special lessons have come to you to help you cope with this struggle?
Tennille: I have realized with Jett's condition and ultimate prognosis that we better appreciate the time that we have with him RIGHT now. Sure, I have my bad days...and then I have my horrible days and some days I wish that I could give up. When I think that way, it brings me down. It makes me unhappy and I find that I don't care for Jett in the same way like I would on days when I am happy. Every day I make a decision to make it a good day. That's all you can do. I have no choice, but to take care of Jett and love him. I find that when I am happy and positive, I see him differently. I see him in his perfect form. I know that one day he won't have a broken body. One day, his brain will function normally. He'll be able to walk and talk. Ultimately, that is what keeps me going. I have to have faith that I will see him again one day in his perfect state.
Miggy: What is the biggest lesson you’ve learned since becoming Jett's mom?
Tennille: I could probably write a book on the lessons I’ve learned since becoming a special needs mom.
Here is what I have learned...Life is hard. It can be scary and unpredictable. You might feel helpless at times. Yet, life is beautiful. The world is full of amazing, compassionate people. Angels are real. God is real...trust in Him. Live each day like you mean it. Celebrate the small things. Be kind to those around you... you do not know what they might be struggling with. Have a plan, but be able to roll with the punches. Laughter should happen every single day. Live moment by moment and enjoy the journey, whatever it may bring.
I don't even know where to begin... Tennille, thank you. From the bottom of my heart thank you for sharing your precious little fighter Jett with us. So much of what Tennille had to say resonated with me--about still doing what she loves and being "me" which is really so crucial, to all of her truisms about life and how scary and unpredictable yet beautiful and amazing it can be all at the same time. I think there is something for all of us to learn in Tennille's spotlight... the word I keep coming back to is gratitude. To be dealt such a heavy hand could really crush a person, but I see so much love and gratitude radiating from this little family. What a wonderful example to us all. Tennille, I'm sure you could write a book... I'd read it. Prayers, love and best wishes to you and your family.
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. Also, if you have a unique perspective--perhaps you were raised with a sibling with special needs or you have an adult special needs child--I'd love to hear your story as well. If you've emailed me recently, please be patient, I'm always behind on my emails!
Have a good weekend.