Hudson’s cardiology appointment I’ve been dreading for some time finally took place yesterday morning. Little Hudson has been super blessed to have no major Heart issues. (Hudson’s five, has Down syndrome.) 40-60% of children with Down syndrome do have significant congenital Heart issues. Hudson has a very slight back-valve leakage that the cardiologist keeps an eye on. Just in case anything develops. Yesterday was Hudson’s echocardiogram and follow-up cardiology appointment. I was dreading it, but Hudson didn’t care a fig because he wasn’t even aware it was coming. Ignorance is bliss.
First off, there’s a few things you should know about Hudson before I go on.
- He doesn’t like to be touched or talked to if he doesn’t initiate it. Especially from strangers.
- He doesn’t like lying on his back
- He loves throwing things
- He doesn’t like new movies, videos, toys or situations
- He loves throwing thing
- He has major sensory issues
- He’s non-verbal
- Did I mention he loves throwing things?
He’s also very stubborn. (And cute as a button.)
We were running a tad late for the appointment, so I thought better of grabbing the stroller from the back of the car and taking the extra time to set it up. Figured we’d head in quick. That may have been my first mistake. That or running late from the get go. We head in to the outer lobby, and while the check-in girl scans his insurance cards, Hudson breaks free. So I break away after him across the lobby. He doesn’t get too far. This time.
One hand clutches him, the other signs paperwork. We walk a good distance down a long hallway and around a corner for our next check-in at the pediatric specialty department window. Then Hudson bolts again. (Where’s that stroller?) I throw the last answer back over my shoulder, figure I’ll just let him go. He’ll be confined soon enough. He moves at a good clip past two nearly empty specialty department check-in waiting areas and finally makes it to the exit door of the East wing. That’s where I draw the line. At the exit door. By now I can barely see the door they’ll be calling him from. Naturally that’s the exact moment I faintly hear:
“Hudson Taylor?”
In the distance a nurse holds a door open. As quickly as he made it across the expansive waiting areas and half the hospital wing, he now has no interest in returning for his appointment. He sits down hard, plants himself. Thumb in mouth. Refuses to budge. I reach down to pick him up, carry him. His back pack and my purse slung over my right shoulder slide down, land on the floor as I struggle lifting him. The owner of the calling voice comes to the rescue. Whips across the football-sized lobby, past two other departments. She carries the stuff so I can carry the boy. Kindness.
We’re led to a cheerful private room, decorated with children in mind. It’s time for Hudson’s echocardiogram. Most children would be delighted by this room. Not Hudson. There’s a back-lit, round tower in the corner, maybe six feet tall, filled with bubbling water and bright circulating toys. Like a fish aquarium minus the fish. There’s also a ceiling-mounted angled TV. There are toys and videos, etc. Also a bed and ultrasound equipment.
I explain to the tech some of Hudson’s hangups. About the throwing. She’s a little chunky, tells me no worries. Hudson couldn’t throw her if he tried. I remark that we’re both safe on that count, well grounded. We laugh.
I tell her he doesn’t do well with new things. Movies, toys, situations. She smiles. And keeps smiling for the next 15-20 minutes giving Hudson the echocardiogram. Smiles as she’s kicked. Poked. Pushed. Prodded. Smiles as Hudson’s amazingly strong and flexible legs pretzel around the very arm she tries to scan with. He grabs the wand. Grabs her. Hucks the lighted ball she offers. Yells. No pain, just doesn’t like being confined.
And still, she smiles.
I try to hold him back. From rolling off the high bed. From injuring the smiling tech. From injuring himself. He’s a strong little guy. Meanwhile, a full-time Dartmouth children’s specialist does her best to entertain him. She puts a Bob-the-Builder video on the angled TV. That doesn’t go so well. He’s never met Bob before. Then she gets an iPad, starts a Veggietales video. Holds it about two feet away. That goes better, because Hudson has met this Bob, Bob the Tomato before. It goes better ’til he remembers that tech with the slippery wand navigating across his chest. Then he kicks her again.
It’s bad.
It’s during these crazy appointments I find myself a little teary. (It’s not obvious. At least I hope not.) It’s not necessarily embarrassment over Hudson’s erratic behavior, though I won’t lie: it’s difficult to handle at times. And it’s not necessarily frustration. I think maybe it’s more of a lack of control over the situation. During these tough appointments I’m reminded of two things:
- That no matter what I say or do, I can’t control Hudson’s next move. Try as I do to make things work, soothe and cajole him… I can’t anticipate how he’ll react in the next new situation. What he’ll do. And I’m coming to the realization that this very possibly might never change. Hudson is not to be reasoned with. If you have a special needs child with sensory issues and difficulty adapting to new situations, you understand exactly where I’m coming from.
- I’m also incredibly overwhelmed by the kindness of the various people that work with Hudson. And that makes me more misty-eyed than anything. The unconditional love and kindness shown to Hudson at every turn.
Finally the echo is over and I breathe a sigh of relief. We move on to another room for Hudson’s work-up. Unfortunately he whacks his funny bone on the doorframe on the way in. It isn’t funny. The kind tech, the one that was kicked, grabbed, prodded and harassed kindly swoops in as his rescuer. He freaks out. More over the stranger factor than the bump. Screams. Yells. Yup.
Next they need a weight. Try to get Hudson to step up on the scale. That doesn’t go so well. He can’t handle the sensory factor of the rubber stripping on the scale he needs to step on. Gingerly touches it with a toe, then refuses. Sits on the floor, plants himself. A nurse races off, gets a large, flat baby scale. Sets it on the floor, spreads a sheet over it, plugs it in. The child specialist starts a new VeggieTales video on the iPad. Sits criss-cross on the floor in front of the scale. Kindness. Hudson happily climbs aboard the scale, sits down. They get what they need. Forty pounds even. (I could’ve told ’em that. I lugged that sack of potatoes in.)
Then it’s time for a blood pressure reading. Hudson doesn’t care for the “hug” they tell him he’s going to get on his bicep. He randomly grabs the cuff off twice, meanwhile glued to Bob the Tomato on the iPad. If the child specialist adjusts the iPad even a millimeter back, Hudson takes both hands, brings it a little closer. Like a millimeter. He might not have many words, but the kid has rules. They finally clip a sensor clamp on his left big toe to get the read. He won’t tolerate it, rips it off. So they transfer it to the right big toe and he’s ok with that. Go figure. They get the reading. Exhale. All this done sitting criss-cross on the floor on a flat metal scale draped with a sheet watching VeggieTales on an iPad in the middle of an exam room.
The last hurdle of the visit is the doctor with the stethoscope. I take a deep breath. She and I talk for a bit while Hudson stays riveted to Larry the Cucumber. He’s happy as a clam. Has forgotten where he is. And I’m guessing the child specialist’s arm is about to break off from holding that iPad just so. Kindness. In a few minutes the cardiologist approaches him on the floor, stethoscope in hand, to hear his Heart. The stethoscope is cold, and at first Hudson pushes it away. Then he lets her listen. No problems. Phew.
Finally it’s time to say goodbye. Hudson’s little nose turns a soft shade of pink. His eyes well up with big tears as the video turns off. Hard to say goodbye to his friends Bob the Tomato and Larry the Cucumber. And let me tell you. The goodbye is every bit as traumatic as the echocardiogram itself.
Sometime during the night last night the humidity dropped sharply. The air is crisp, almost fall-like this morning. Windows open all over the house. Chilly. It’s nearly 6 a.m. before I hear the faint rustling in the living room. Hudson on the sofa in summer jammies, shivering. Chomping on his therapeutic chewy for dear life. He looks so tiny and alone. Can’t tell me he’s cold. I sink in next to him, silently wrap him tightly with both arms. Turn sideways, wrap my legs around him too. A big bear hug. He leans in, snuggles close. Doesn’t move a muscle. For nearly ten minutes we stay that way. I heart this little boy. I drink him in, absorb the silence, love from Hudson. I’ll take these precious, quiet and peaceful moments. Reminded that this world, often scary, difficult and impossible for my little Hudson to understand and navigate, is not his permanent home. Just a stopover on the way to Where there’ll be no more crying, tears or misunderstandings. Where everyone will have an equal number of chromosomes.
If they even have chromosomes there.
I don’t tell you the tough stories for sympathy. Writing is just my way to process the daily chaos. How I communicate, organize my thoughts. Thanks for listening. I’m incredibly thankful for a wonderful encouraging support system. Kind ones who pitch in, check on us. Help when they can. Also a great medical community. Very blessed. Not every family with special needs children has such a great support system. While I wouldn’t trade our journey for the world, it’s not an easy one. Each day (and appointment) brings its own adventure and challenges.
Speaking of appointments, Hudson has an upcoming endocrinology appointment. Involves a blood draw. (Need I say more?) Sure hope I can rope Jon into escorting him. (Though he did take him to the last blood draw…)
And after that?
The big. Bad. Wolf Dentist.
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nancy mcmahan says
You are amazing. God placed Hudson right where he belongs..into your beautiful family.
Allie says
Dear Nancy, Thank you, you are very kind. I don’t always feel amazing. We are very grateful for Hudson. He brings a lot of love and a lot of lessons. xo
Simone says
What an incredible journey! I held my breath the whole time not knowing how each step would proceed to the next. And then I broke down as you shared about little Hudson in his p.j.’s ,cold and apparently, needing his mama and a big bear hug! Thank you, Allie, for sharing from your heart. We will be praying for these upcoming appointments and look forward to reading all about them. :O) Hugs to your precious Hudson.
Allie says
Thanks for your prayers Simone. I gave Hudson extra hugs from you this morning. xo
Julie says
I heart Hudson too…AND his incredibly patient, Hand-chosen Mama.
Allie says
Thanks dear J.
Barbara Child says
Your vivid description of each detail in navigating every day occurrences with Hudson really helps us understand a LITTLE of the challenges you face every day. Surely it helps me be reminded to pray for you every day for patience, love, enabling, and even help anticipating the next challenge. And Hudson is only one of the people needing your love and guidance! Thanks so much for sharing–let me know if you have another appointment without help and perhaps I can go with you. Not sure I can lift 40 pounds, but might help somehow! LOL
Allie says
Dear Barbara, thank you. I know you understand the challenges of special needs children with your life-long experience with Katie. There are definitely joys and challenges on this journey… xo
Judy says
Lovely piece of writing, Allie. I heart Allie. (BTW, when it’s time to visit the big bad wolf, there are dental clinics where special needs patients can be put under anesthesia briefly for dental work. Not ideal but, if there’s no other way…)
Allie says
Thank you, and for the reminder about anesthetic dentists. Will definitely keep that in mind…xo
Ellen says
It’s amazing to me what you deal with in a daily basis. I’m so glad Hudson has you for a Mom. Praying for these challenges that both you and Hudson will make it through. ❤️ To you and your boys!
Allie says
Thanks for the love and the prayers friend! Both needed. First day of school around here today. XOXO
Paula says
Allie.
Thank you for sharing your adventures with Hudson. I am amazed at the calm and measured response you have to Hudson’s reaction to the world around him. You are a wonderful picture of grace.
Paula
Allie says
Dear Paula, thank you. Sometimes I feel more like a survivor, as in….I survived today. (!) But I know these daily challenges are growing me. And Hudson too. I don’t think our appointments will always be like this. Hopefully there will be progress…xo
Susie Mandel says
What a BLESSING those angels at the cardiologist’s office are!! As always, thank you for sharing your your heart. <3
P.S. I can't blame Hudson for not liking all that stuff, either. 😉
Allie says
Medical stuff is the pits Susie. And you would know. So incredibly thankful for caring nurses and staff everywhere we go. You’re right. Angels. xo
Denise says
Wow, you really captured just a few hours of life with Hudson. I held it together until I read about the momma and son bear-hug. Julie said it best, I heart Hudson!
Allie says
thank you friend. and we heart you. XO
Aunt Pinkie says
Hard to type through tears and a sniffling nose! Such a tender take so lovingly told! I know one thing – next time you will definitely take the stroller! Will pray that Jon will step in again for the next appointment and think the idea of anesthetic for the dentist sounds like a great idea! Bless you all and a special bear hug to Hudson.
Allie says
Thank you dear Aunt Pinkie. Love you. Just delivered your bear hug to Hudson…..he is very pleased!
carrie albright says
Love your heart, dear Allie!
Allie says
Thanks friend. I know you understand the challenges that go along with special needs…you are an inspiration to me. xo
Mary Judd says
What wisdom & understanding you have in knowing Hudson’s unique needs & desires. You are a very special mom to all of your boys . We love you & many continued prayers for strength for a busy, busy mom.
Allie says
Dear Mary, thank you. Have always looked up to you as a mom of FIVE boys. You are ahead of me by one. And I also know you understand the term special needs. Many thanks for the love and the prayers. Love to all your dear family. Miss you. xo
Maggie says
I love your Hudson posts. This one reminded me of my Down Syndrome patients. They were my favorite patients. I can’t wait until I am able to see Hudson again face-to-face and all of you wonderful Taylors.
Allie says
Thank you Maggie. You are very dear to me. I look forward to that day, xo
Karyn says
You are the best! Love and miss you, Allie! Will be praying for sweet Hudson.
Allie says
Thank you friend, for the love and the prayers. Miss you back. xo
Linda Jenkins says
I am constantly amazed by your ability to handle all you do. Your tears for all reasons melt my heart. But most importantly, I am inspired by God’s infinite care and wisdom in blessing Hudson with you and the members of your family. What a love Hudson is.
Allie says
Thank you Linda. XOXO
Heather M says
What a beautiful post that is so real, giving every one a peek into your family’s life and the realities you and many families live every day with – with grace. The mama’s heartbreak of her sweet boy not being able to tell what he needed is palpable. This is the second time I read this post. I can’t sleep and God brought you and Hudson to mind and I felt led to pray for your sweet boy, that in the midst of this crazy and confusing world, he will have a heart that recognizes and seeks after God in the way he can. That his (and your) life will be a witness of God’s grace and love.
Allie says
Dear Heather, thank you for the kindness and the prayers. I feel so encouraged to know we’re being prayed for in the middle of the night. I’m certain that’s what gets us through the hard times…many prayers. Hudson is cheery this morning, has eaten two pieces of french toast and is happily watching Curious George now. Thank you so much for dropping by and your thoughts and prayers. You made my day. Hope you have a wonderful week. (And that you get better sleep tonight!) xo
Anu-My Ginger Garlic Kitchen says
Wow! What a beautifully written article, Allie! You are an amazing person. Hudson is indeed as cute as button. Praying for these challenges that both you and Hudson. He will make it through.
Allie says
Dear Anu, thank you so much friend, for your thoughts and prayers. There are many challenges on this journey but there are even more joys. xo
Shashi at RunninSrilankan says
Oh wow Allie – what an incredible post! You have a wonderful gift – both in your writing and little Hudson – I agree with Nancy – God placed him with you for a reason!
And I so understand you tearing up as you were overwhelmed by the kindness of all the people in that hospital – I had a friend who was a special needs teacher, and she would come home black and blue sometimes, but she so loved every one of the 3 kids she was in charge of! My thoughts and prayers are with you and your family – this is the first post of your’s that I have read about your wonderful family.
Hudson is indeed lucky to have a mom who understands that even though navigating this world is hard – it “is not his permanent home. Just a stopover on the way to Where there’ll be no more crying, tears or misunderstandings.” – such beautiful, powerful words, sweet Allie.
Allie says
Dear Shashi, thank you for your very kind words and the prayers. (I was glad the Kleenex box was nearby.) I know your friend was such a gift to the families she worked with. And you, are a gift to ME. You cheer my days so often. 🙂 Thank you. xo
Carina Spring says
Dear Allie, thank you for sharing this post, written with such love and honesty. I am glad that you were surrounded by specialists who were so kind and supportive during such challenging moments. You are a truly caring and generous person, and you do so much, how lucky your sons are to have such a special mom. Reading this post – the difficult appointment, the heartwarming cuddle – it reminded me of how sometimes challenges can strengthen us and open us up to experience life more fully, to feel a broader range of happy and sad. I will be thinking of you and your family. XO
Allie says
Dear Carina, Thank you for your sweet thoughts. I have said in other posts before almost exactly what you said here. I have realized that if I numb myself to the pain and difficulties, I will also be numb to the joys. I don’t want to miss out on any of the joy, and so I consciously attempt to embrace the difficulties too. So thankful for your friendship across the miles. Thank you. xo
Tracy says
Allie, I know you write these pieces to help you process and understand your life a little better but they are indeed a gift to the readers. The way you handle and view these situations is remarkable. You are remarkable! Your ability to write so eloquently touches us. We learn so much from you. I learn soooo much from you! Children with special needs can be quite a handful but in return they touch our hearts so deeply. Loved this piece. Loved hearing about your special moment together! Thank you! And….. I would love to help you out with some of Hudson’s appointments. ?
Allie says
Dear Tracy – You are so kind, friend. Thank you for sharing in the joys and the hard stuff. You are such a blessing to me. I have appreciated all your help and encouragement on this journey. xo
Cheyanne @ No Spoon Necessary says
Wow, girl… your strength, patience, and outlook on life is absolutely beautiful! I do not think I could handle so much with SO MUCH grace! Honestly, you are an inspiration! I am so glad Hudson’s cardiologist results were good… even though the appointment itself sounded very far from “good”. I have all my fingers and toes crossed for your endocrinology appointment! I will definitely say a little prayer that it goes smoothly for you guys! Thanks for sharing your story…your writing is beautiful and warmed my heart. Cheers to YOU, Allie – to being the most fabulous person I “know”. <3
Allie says
You’re very sweet Cheyanne. Good things come in small packages. I probably couldn’t have have handled that scene as easily when he was a baby. But I’m growing right along with Hudson as he grows, learning all the time. (And I have a feeling there are lots of lessons still to come.) There’s something therapeutic about writing our adventures, I feel like the journey is somehow shared. Thanks for being part of that, and for the finger and toe crossing too. xo
Lisa says
sounds like a very special and wonderful little boy. Bless you and your family!
Allie says
Thank you so much for dropping by Lisa. Hudson is very dear, and we’re also very thankful for his three big brothers who are super helpful with him.
Eva says
Je crois que tu est une maman très bien veillent et courageuse ! Hudson c’est un petit héro !! Gros bisous à tous les deux! xx
Allie says
Merci beaucoup Eva. Vous êtes si doux. Je l’espère vous aviez un merveilleux séjour! XOXO
Karla @SmallTownRambler says
Thank you for sharing this beautiful story. Hudson is so handsome and sounds so sweet. It must be a lot for him to process everything that’s going on. And who doesn’t love Veggie Tales…always a hard goodbye! My Ethan used to put up quite the fight with his EEG’s, but now that he is older, we’re are dealing with his brutal honesty against the medical staff. :/
Allie says
Dear Karla, thank you. XO