The following is a letter from Mandy Bangerter (WY Hands & Voices) to her son, Declan, on his sixth birthday.
I hear you breathing next to me. I see the oxygen tank, the tubing, the tape and I think back to the first time I saw you. My lil nugget of a boy, 4lbs, 4oz. I loved you then and I love you now. Today my heart is tender as I reminisce of celebrating your 6th birthday a few days ago. Then days later finding out you are legally blind and awaiting your sleep study appointment tomorrow to see what happens with your apnea. It’s all similar to the moments of your birth, celebrating you, yet some unknowns.
When the doctors told us you might have Down Syndrome, it didn’t matter to me. Well it did, because I felt inadequate as your mom. However ‘growing up a Down Syndrome mom’ is AWESOME! I am grateful I get to share in this journey of life with you, to have all the experiences we are having together. Yet Dec, there are times my heart aches, I feel a pain in my chest since the doctors appointment yesterday. Not because I am sad, but because I worry for you so much. When I see you, I imagine all of these mountain ranges surrounding you, you are in the middle of them looking up ever since you were a baby. Imagine laying on the ground looking around you at the surrounding highlands seeing the beauty in them, but feeling the pains of climbing them. You, my son, are the only one who truly knows how this has been for you. I have been an active spectator and advocate along the way, but I wonder often how it is like for you. Sure you are happy much of the time. Moments like the other day you were happy/sad about 20 times in one minute as you voiced it to me! Lets take a moment to label some of those mountains for you; NICU stay, the 1st 6 weeks of life. Mostly being in a cold/hard bassinet, monitors, wiring, breathing and feeding tubes taped all over you. CODE BLUES, yells of help, feeling the gentle movements of your body along with the quiet whimpers you were bellowing out. Oxygen dependent 24 hours a day for the first 7 months of life and 1 week following coming off of oxygen starting Infantile Spasms (seizures). Hundreds of them a day for a few weeks. Watching your body not only have the seizures but fighting the impacts the medicine had on your body. That mountain was pain-filled and it was so hard for me to watch you go through all of that. At the end of 32 days of treatment of ACTH, you are cleared and followed up with an upper GI Study and a sedated ABR, resulting in the finding of bilateral sensorineural hearing loss that was mild/moderate. You are fitted with hearing aids shortly thereafter Some moments pass and you need glasses due to eye sight matters and the effects of the seizure meds. You have chronic lung disease, a PDA, and a whole laundry list of other health concerns. At this point you are nearing your 1st birthday.
Deep breath, buddy, you have fought and climbed so many mountains already and you are only 1! Mixed with all that you have your weekly therapies of OT, PT, Speech and so many doctors appointments I lost count. My favorite memories of this time is pacing with you back and forth in the quiet moments of life, feeling us connected in a way that no one will ever know but us, it is our bond, our unity that we will never share with another. My thoughts have gone towards your big brother, Michael. He told me shortly after we found out you had the diagnosis of Down Syndrome that he loved you even more. It stands true to this day. BobBob (your nickname for him) is one of your best advocates, your guide, in your words, “best friend forever.” When I hear the two of you giggling together or see you working on projects, I melt. When BobBob asked me one day if he could adopt you from me when he got older, I was both sad and elated to know that he would want you so near to him and baffled at the intense love the two of you share.
Continue on in the days of life adding an ASL teacher, swim therapy, horse therapy, a list of doctors on your team that now exceeds 20 + different specialties. You’ve been hospitalized with hypothermia, for surgeries, for procedures, for Pneumonia. The doctors office is a love/hate relationship for you. The nurses at Children’s Clinic are phenomenal and you love them as though they are your family. Yet you are getting old enough and able to express your nervousness, fear and stress of having to go to another blood draw, check up or medicine. Speaking of medicine you are allergic to several and shudder at the thoughts of having to chew a crunchy tablet or tasty yucky fruity medicine like little Llama taught you from the books.
You have the ability to love like I’ve never felt before. You are also loved in return by so many. You call the pharmacist Aunt Des, neighbors are like grandparents to you, so many therapists that are like extended family. To all the horrible comments that have been directed to me because you are who you are, I say, to bad for you that you are unable to feel and experience life with you, because it is one of the greatest opportunities and adventures of a lifetime.
Smarty Smarty Go to a Party is one of your favorite phrases to say! You my young son are just that, a party of learning continuously. I didn’t go into a medical field in college for a reason, I cannot retain all of that information. Although I have been on a crash course the last 6 years with you, there are so many times I’d give myself an ‘F’ for a grade, however it’s a great things I’m not truly graded, but know that I am continuously researching for you, learning and doing. I need more time in my days to do it all for you though. I have to trust that if I prioritize and continue on then that is the best for you. There are things that have never ended for me since you were born. The urgency to always figure out if we will have finances to help you through everything. The desire to help you become your best self and not let the world halt you in anyway. I have cried/sobbed in the shower, late at night, during the day, as I hold you and sing to you (maybe it should be you crying when I sing!). Tonight’s tears were from deep within the well of my heart as I sang our version of Hush Baby… getting to the part of “Mommy’s going to show you a hummingbird.” It ignited so many unknown answers to many questions of what will unfold with your eye sight over time. What have I missed for you. What have I not considered. Why did I wait this long to ask more thoroughly. Declan I have never nor will I ever intentionally fail you. I feel as though I have lived the ‘baby stage’ since you were born. That might not make sense to you, but to many moms it does. I get to lay beside you, hold you or have you lay on top of me and ‘nuggle’ almost daily while you fall asleep and those are cherished moments I get to have with you.
Some of your favorite things have always been with farm animals. We make up a book in our minds and conversations together. My favorite is Declan’s Mixed Up Farm with Cotton Candy the sheep, Matchbox the horse, Declan the farmer, Moo the Cow and so much more. Your first language is ASL as you used it for the first 3+ years of your life. You are great at communicating whatever method you choose and are offering many hilarious moments. Some may not appreciate them, but I laugh (many times hiding it from you) because I see how hard you work to communicate. So the ability you have to say and sign at the same time, “I like to touch these!” while pointing to your long horned steers balls is wicked hilarious! Or saying to the same therapist as she went out the door that day, “Don’t touch other peoples very special private parts!” I can only imagine all of the synapsis that are constantly happening within you. You like to read many books a day and are learning to read right now and sign a book from the front cover clear through to the end.
You are starting to sing with your favorite songs and beg to have them played repeatedly. You threaten to pee on me or the ceiling multiple times in a week and to your dismay usually end up going in the boring ole toilet. You ask where your brother is if he is out of sight, but go into what we call attack mode so often when you are with him. You like to do projects (I think mostly to dabble in a good old taste testing to see which glue is the best tasting). You pick out your own clothes now and I am positive all our wardrobe would consist of if it was up to you was an occasional pair of underwear and your 3 soccer shirts from TOP soccer. You can shake it when you dance like no other and try hard so often to learn to jump. Your persistence in not needing to wear any clothing and signing and yelling at me, “I not need clothes, no clothes means NAKED,” leads me to think we should find you a beach of some sorts.
I have learned about diligence, persistence, love, commitment, humor, serenity, curiosity, acceptance, did I mention love, and beauty from you. We waited for 9 years for you and although there were so many pain filled moments during that time as my heart wanted another child so badly, I see you were waiting to be picked at just that moment, like a ripe peach picked from a tree at perfection. You my sweet peach are perfect in every way.
Your weeks are filled with therapists, doctors appointments and illnesses, all too many to count and you flourish through it all. When life becomes routine, it is just what it is, but I see and hope for you to meet other children in your day, to become your best friends, to be invited to activities, simply because you are you a child first and foremost, just like we all are inside. Let your light shine!
I’ll be honest with you, the sleepless nights are many, but the love is more. The doctor’s appointments and therapist fill the calendar, but the friendships are more. The unknowns are ever present, but knowing you is more. Words are weak when I think of you, because the feeling is genuine, robust, and unique. My dear boy, I hope you know and more so feel how much I love you and thank you for being a teacher of mine in life, all for the better even if there are courses within it that seem to stretch me beyond capability. I am realizing the days are long, but the years are short. You have so many roads to travel, mountains to climb and I hope you feel and see the beauty of the Universe with all your senses and with your whole heart! Look at your Mountain Ridge with aww, embrace the beauty of it, ask for help from your village when needed. Please always sore to the highest heights you want and don’t stop climbing or flying! Spread your wings lil guy and explore the world!
Hey Hey, I love you brown cow! Hey Hey I love you black cow! Hey Hey, I’m a COW! This phrase never gets old to me as you have me say it to you and with you when we go away from each other. Your eyes light up, your mouth pops open and the light expands from you! I’ll be your momma cow forever!