A story about my Little Star Hudson today. (Hudson’s 5, has Down syndrome, and just got home from the hospital a few days ago.)
But first, for a quick second, think of your worst fear. (Several friends recently told me their worst fear is becoming a vegetable. Which is why they’re not reading/participating in the virtual book discussion on Ghost Boy coming up here on the blog on March 19th.) I totally get that and I’m ok with it. Because I have fears too. This past week I had to face one of mine head-on, and grateful to say I’m on the other side and alive to tell the story.
If you’re a parent of a little person, you want to be there for their every need. And if you’re a parent of a special needs child, that only intensifies. That’s why it’s so hard for me to go out of town or even away for a night, because I worry that Hudson might need something and be unable to communicate it. Hudson is mostly non-verbal. And while I can decipher much of his pointing, gesturing and noises, if you haven’t spent much time with him, you really can’t.
So if you read along here last weekend, you know Hudson was just getting sick. ( Catch up here. ) And by Saturday, he was dehydrating quickly, becoming lethargic. First he went to urgent care, then the ER, then was admitted to the hospital and diagnosed with influenza A, dehydration and hypoglycemia.
He ended up staying in the hospital thru Tuesday night, so he needed an advocate/caregiver there 24-7. Dealing with a new setting, an IV, different food, bed, room, sounds, caregivers etc. were all significant challenges for Hudson, who thrives on routine and familiarity. I spent the first night at the hospital with him, and between the checking nurses, IV bag changes and beeping monitors, I managed to snatch a few brief naps in the “bed”, a vinyl semi-reclining chair. I woke up feeling pretty rotten myself, and assumed it was just the rough night. But by early afternoon I realized that I too was getting the flu. Jon came in and relieved me and spent the next night at the hospital. Then he woke up the following morning, felt awful too. Murphy’s law. (No offense you Murphys out there, I’m sure you’re nice people and all.)
So here we were, Jon and I, both pretty sick with influenza A, and suddenly neither of us can be there at the hospital for our little Hudson. And that’s always been one of my biggest fears. That when push comes to shove and Hudson really really needs us, we won’t be there. What to do? Just thinking about it brings stress. But honestly, it was a great lesson in trust, as kind family, friends and even his big brothers willingly donned surgical masks and stepped up covering shifts at the hospital with Hudson. I discovered my fear was actually greatly disproportionate to reality, which is that there are many people who also love and care about Hudson and are willing to help. And interestingly, Hudson seemed to do just fine. Who knows, he probably even enjoyed the break. The truth is, many times our fears are worse than the reality itself. At least I found that to be true in this situation.
So in honor of Hudson our littlest star coming home from the hospital, and because my time has been very short on account of all that has happened…. I’m sharing one of my favorite stories about Hudson below: Twinkle Twinkle Little Star. Several of you early subscribers have read this before. Enjoy, and have a beautiful, healthy weekend. (We’ll try to do the same.)
(If you’re new around here, I post recipes during the week and muse on the weekend.)
Hudson’s adored music ever since he was a baby. I didn’t catch it at first. He was maybe 8 months old and we’d get in the car. I nearly always play music in the car. But every once in a while for one reason or other I’d forget to turn it on. And we’d drive for a minute or two, and Hudson would cry. I soon figured out that when I turned on the music, he’d be happy happy again. Worked like a charm.
When Hudson was just a little little baby, I’d sing Twinkle Twinkle Little Star to him. Often. We spent seemingly days rocking together. First in the NICU, then afterward in his nursery rocking chair. From the very beginning, when all else failed, Twinkle Twinkle could solve anything. It even worked in the grocery store aisle when, as a toddler, he lion roared at every Tom, Dick and Harry we passed. (Read here: Shut Up and Listen) Hudson’s five now, and we’re still singing Twinkle Twinkle. He never tires of it, always delighted anew to hear his favorite song.
Hudson’s attended music therapy since he was eighteen months old locally at the Manchester Community Music School. He’s even famous (ha!), featured in their on-line digital view book. (You can see more of the view book here.) He gets really excited about going to music therapy each week. Learns all kinds of educational things set to music. Colors, rhythm, tone, speech, etc. And he also gets to see his beloved music therapist Christina.
It just so happens that Twinkle Twinkle Little Star and the Alphabet song are both the same tune. Did you know that? (Sure you did.) I’m embarrassed to say, and especially as a former early childhood Kindermusik educator, how late in life I realized that. But I think my singing Twinkle Twinkle Little Star so often somehow unwittingly set Hudson up for early success with his ABC’s. Because by the time Hudson turned three, he knew all his letters and sounds. He still can’t articulate many words, but he’s an ace with letters. Hudson loves the alphabet. And Hudson loves Twinkle Twinkle Little Star.
They say music is the universal language. And maybe Hudson’s love of music stems from being the youngest child in a musical family. But it seems that children with special needs in particular, have an even deeper connection to the expressive. Music, art, dance. It seems to be a vital part of their communication, a deep connection to a world they can’t always communicate in conventionally.
A friend was telling me about taking her little granddaughter to a dance recital last weekend. Her granddaughter is five years old, also has Down syndrome. This little girl was riveted, “danced” in her chair the entire recital, nearly an hour and a half long. Towards the end, she got out in the aisle, danced along for the last ten minutes or so. Can’t imagine too many people watched the recital on stage with such an expressive solo recital in the aisle. Neither she nor Hudson have many words, but music and dance are beautiful ways they express themselves.
So last week it was Charlie’s piano recital at the music school. It started in the evening right at Hudson’s bedtime. Sadly Hudson’s been sick for weeks now…heavy congestion that just won’t quit. (We’re working with an ENT for answers, but none yet.) Jon and I were debating whether both of us should go to the recital. Usually one of us misses for this very reason. Hudson doesn’t do well sick and up past his bedtime. But we took a gamble, decided to take him. Had plan B, an extra car, in case it didn’t go well. Hoped for the best. Especially for the performers!
Charlie’s up first, plays The Flight by Faber. All goes well. (With Charlie and Hudson.) The next few pieces go ok for Hudson, but he gets a little antsy. Squirms, needs a nose wipe, makes occasional Hudson noises, etc.
Then comes “the” moment of the evening.
A tiny little girl by the name of Edythe marches to the grand piano. No sheet music, she climbs up on the piano stool and boldy plinks out her piece. Loud, authoritative.
Twinkle Twinkle Little Star.
In my peripheral vision I see Hudson straighten up, pay attention. His face lights up like the new dawn. This is it. Grinning from ear to ear, Hudson is in his element. He knows this piece, every note, backwards and forwards. The final note echoes, then that brief milli-second of silence before the bow and applause. Eyes sparkling, Hudson peeks at me, then Jon. Arms stretched wide, poised, ready to clap, cheer. So excited. He claps longer, louder, more enthusiastically than anyone in that recital hall. He’s her biggest little fan. Hudson lasts just one more number that night and then Jon takes him home. But it’s a magical night all the same.
As I write now, Hudson sits on the sofa, listens to his favorite Kindermusik Fiddle Dee Dee CD.
“Ick, ick.” That’s how he asks for music.
The song playing is the operatic Meow by Rossini. Hudson’s laughing hysterically, giggling, hee heeing. The funniest thing he’s ever heard. (Tickles my funny bone too.) Hudson loves this song too, loves music.
Keep shining, keep twinkling my Little Star Hudson.
You may also like this post: Embrace the Gift
I am so thankful to have met you, Allie. You are one of the most amazing moms I know. I am so sorry that you all got sick. I could picture Hudson smiling as you wrote about twinkle twinkle being played at the recital.
Awww…thank you friend. I’m very thankful to have met you too! And hoping you have avoided all the germs!
What a wonderful story about your Little Star! “But my God will supply all your need according to his riches in glory by Christ Jesus”. So happy to know that Hudson survived his hospital stay with the help of kind friends and family, and that you parents have recovered, as well. Reminds me of the C. S. Lewis quote I’ve seen so often on Taylor e-mails: “We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be.” Love you all!
Many thanks! We are not 100%, but getting closer every day…XO
Twinkle, twinkle is timeless! I loved rereading Hudson’s recital story. Twinkle, twinkle little star is also a favorite of my mom’s (95 now with Alzheimer’s). She recites it daily – I need to try the musical version! I sure hope you ALL are well quickly.
Thank you so much Susan, I can just imagine your mom enjoying Twinkle Twinkle!
LaWanna Burrows says
Not only is your son Beautiful,but you can read between the lines and hear how much he is loved.Thanks for sharing a piece of your son with us.
Dear LaWanna, thank you so much. He’s a keeper, that’s for sure. Thanks so much for dropping by!
Cindi B. says
So sorry to hear about your bout with the flu; hoping you are all on the mend now. Isn’t it ironic that some of our fears float away like smoke when finally realized. You have wonderful sons, family and friends! Love you and enjoy your musings!
Thanks Cindi, school vacation didn’t feel like much of a vacation this year, but glad to be on the mend. Hudson went back to school for the first time today and apparently all went well. I sure am thankful for wonderful friends and family. Love you Cindi. xo
Dear Allie, I remember this beautiful story and truly enjoyed reading it again. Heartwarming. I am so sorry to hear that you all suffered this awful flu, but how wonderful that you were able to find the positive side of it, too – able to see and appreciate the caring and love that your family and friends showed for Hudson and your whole family. Earlier this year I got a terrible case of laryngitis, completely lost my voice – I mean completely, for almost a week – and it really made me aware of how much we rely on our voices, as well as how we find other ways to communicate and how challenging that can be (I couldn’t go to work either, as I rely on my voice there). I am glad Hudson is home again, and am hoping you are all on the mend and able to enjoy a relaxing and healthy weekend together. Take care, Allie. Xoxo
Thank you so much Carina, the weekend was definitely better than the preceding week! XOXO
Nancy Hammett says
Sorry about having and you &Jon also been sick hope are all feeling better. Love and Gods blessing to all of you.
Thank you dear Nancy! xo
Mary Judd says
My hear hurts knowing what you & Jon have been through this past week, being down with the flu. How I pray you are all on the mend, feeling much better. What a beautiful testimony to having to face your worst fears and seeing how God intervened and brought you through this trial. A real encouragement to me personally.
Thank you Mary, I’m so grateful we are past this week. Hope we can avoid any more germs this season. I remember a time when Jon had the flu and I had strep throat and you and Jim came and got Jonathan and Jacob. They were just little. And it was such a blessing and we will never forget it. It’s people like you that make the world go round. Love to all. XOXO
Beautiful story. Sorry I’m missing all those precious moments. Hope everyone is feeling well now.
Thank you Dianne. xo
Linda Jenkins says
Hi to all the Taylor family. So happy to hear that Hudson is home and in his element. Whatever you write about touches me; you seem to have a sixth sense that has you writing what I need to hear. Jack and I took turns caring for Lucas and Landon this week. Those little guys were so sick, definitely not a ill as Hudson, but sick nonetheless. And I understand your feelings of helplessness. I’ve prayed a lot this week for Hudson, Lucas, and Landon. I have a stuffed animal for Hudson; I was waiting for him to come home before I came home. Unfortunately, I have a nasty sore throat, so I think I will keep it until I see you at Bible Study. So relieved and happy that your “little star” is home with his loving family.
Oh I’m so sorry to hear your little guys have been sick too, Linda. You and Jack are so wonderful to help out with them, I know it means the world to their parents. And I hope you are feeling better too. xo
Ruth Anne fuller says
Hi Mary Judd…just read allie’s blog. Wanted to say hello. We are in Sc…just attended funeral for Merrill Miller’s mom. Hi Allie…trust you are all on the mend. Now in Grrenville with our kids for weekend…back to Ohio on Monday. Do take care…Grace and blessing…Ruth Anne Fuller
Good to hear from you Ruth Anne and I’m so glad you were able to get to South Carolina for the funeral then spend time with your kids. Love to all. xo
Kathy @ Beyond the Chicken Coop says
How scary for everyone! Hope you are all on the mend!
Thanks Kathy, we are not 100% but we are getting there!
Barbara Child says
Everything is harder with special needs children! So sorry you’ve had such a lot of sickness starting with Hudson but going through many in your family! What a blessing that music has become so important to him! It’s the universal language which blesses across the barriers. Keep singing, Allie! Your words bring healing and comfort across the globe, I’m sure! LOL
Thank you Barbara! We are coming up for air….so thankful! xo
Susie Mandel says
So glad you all are on the mend, especially your Little Star. Love you, Susie
Awww…thanks so much Susie. It’s been a nightmare kind of week which would’ve been much worse if there weren’t kind people who stepped in to help! xo
Cynthia | What A Girl Eats says
So glad he is doing better! Nothing is worse than having your child sick! Twinkle, twinkle was the first song my girls learned to sing! xo.
Hey thanks Cynthia, I couldn’t agree more. I hate it when my kids are sick, especially Hudson. xo
Cheyanne @ No Spoon Necessary says
I’m so sorry to hear about Hudson being so ill, Allie! I hope everything with his health gets better! But such a blessing to have so many people who love you guys step up and be there for your family! Love the twinkle twinkle little star story! LOVE that Hudson clapped the loudest! Warms my heart for sure, my dear! And I had no clue twinkle twinkle and the alphabet song were the same tune… I just hummed it to myself right now and thought, “How did I not know that?!” 😉 Cheers, friend – to you, your family and better health! XOXO
Hey friend, thanks so much. I always love hearing from you. Have a FABULOUS week and I can’t wait to see what you’re cooking up in the kitchen next. And keep humming. xo
Shashi @ RunninSrilankan says
Oh Allie I am so sorry to hear about Hudson – gosh, I can imagine how you felt and I can imagine the relief that ensued – God is pretty amazing in how he fills our hearts and moments eh?! BTW – how are you and Jon doing? I hope y’all are over the flu too!
Simply beautiful story about Hudson – You did such a wonderful job describing his excitement when that little girl started playing Twinkle twinkle little star – I almost felt like I was sitting there watching him and you – Your heart must have been bursting with joy at his happiness!
xoxo – hope y’all are better!
Thank you so much Shashi, it’s been quite a week or so, but so thankful Hudson is out of the hospital and doing great now. I am still dealing with headaches, and Jon says he is back to 100%. So grateful, felt like this thing really dragged on. I’m so glad you liked the Twinkle Twinkle story about Hudson. I really loved writing that piece about him. XO
Mandi Korn says
Sorry, I have been disconnected with my blogging friends and missed your ordeal with your little man. I am glad that he is doing better now, and you are so strong and brave to have gone through this and posted something wonderful about the experience instead of fear and sadness. You are truly lucky to have had your friends and family there to help you in your time of need. I am thinking of you and your family, xoxoxo
PS I cannot let my sound monitor go, I still have it on in my daughters room. It saved her life one day (long story) and I may not let it go until she is a teenager. That is my biggest fear, not hearing when she needs me, like I did once before
Thank you friend, I am so glad little Boo is ok too. Sounds like some scary moments. XO
Karla @SmallTownRambler says
So sorry you all have been going through that. The flu is the absolute pits! It brought a smile to my face when I read about ‘Twinkle Twinkle, Little star’ being played at the recital. Right on time!
Thank you Karla, the flu was bad, but it sure makes me appreciate health even more when we have it! Hope you and yours have an excellent weekend!
Linda Kisker says
Reminds me of when no one could understand Michael but me. I was always translating to others for him, even other family members. Glad all of you are better and on the mend. Miss you guys and love you.
Dear Linda, Michael will never be forgotten. Ever. You were a wonderful mother to him, and he was blessed to have you advocating for him. I know you did it from a heart full of love. We love and miss you too, please give hugs to all the family. XOXO