You know, this week has got me thinking about Down syndrome. I was thinking about how sometimes it really does requires quite a bit of hard work. Hard work for Dylan obviously, but also for his parents and his sister as well.
For me and Dave, we find that some of this hard work comes in the form of performing certain secretarial duties. I can not tell you how many files and folders that I have for Dylan and the little guy is not quite 7 months old yet. This week in particular, I have spent a great deal of time on the phone with our new insurance company. This time I am trying to figure out exactly what our new plan is all about and why in the world we are now required to pay them $526 before they will even consider sending out our next synagis injection. Every day I must keep careful track of Dylan's schedule. Don't want to overbook the guy. Our calendar is filled with Early Intervention stuff, pediatrician appointments, cardiology stuff and now otolaryngology (pretty fancy name for a hearing doctor, eh!). I have to tap into my creative side each afternoon as Dylan tires of his bouncy chair and play mat. Because of his low tone, he is not able to hold himself together very well, thus we have pretty limited options for entertainment. Oh how I'm looking forward to the day when he's ready for his exersaucer and jumper!
For Cassidy, she must learn patience and understanding. She spends a great deal of time with Dylan's EI team and is clever enough to know that they are not here for her. She has spent the majority of the winter in our house so that we can keep her and Dylan healthy. She goes to doctor appointment after doctor appointment with us. She has given up lots of mama and daddy time while Dylan was in the NICU and then the PICU.
Down syndrome is hard work for Dylan. Dylan must learn to reach milestones with low muscle tone. He will have to work harder at every single thing that he does. Eating, reaching, rolling, sitting, crawling, walking. He will reach these milestones even though he underwent open heart surgery at 4 months of age. He will reach these milestones with hearing loss and with possible vision problems.
With all of this in mind, please know that I never said that hard work is bad. In fact, I thrive on a challenge. The hard work keeps me going. And to be perfectly honest, I think that all of these challenges are making our family stronger. We are already better people for having Dylan in our lives. This I know. Without question.
But...when we are in the moment and the hard work feels overwhelming, what are we to do?
Well, for one, we could dress him up in my err...I mean his, favorite pjs and take some cute pictures like this.
Orrr, we can just sit back and watch special little miracles like this. And know that every single moment of hard work is so worth it.
17 comments:
Oh he is so cute! Feel your pain on the paperwork and appointments. His twin sister spends a lot of time in doctor's offices as well. I figure she'll either hate doctors or want to become one.:) Caleb LOVES his Jumperoo so I hope Dylan will as well. Whenever he gets bored, I just strap him to me w/the Baby Bjorn and just do what I was going to do anyway. He seems to be entertained by whatever I'm doing. So just wanted to let you know I get overwhelmed too some days.
Wow, he totally rolled over! That is so awesome.
I could hear Cass in the background laughing and that got me thinking how lucky they are to have eachother.
Cass will be there to protect Dylan and encourage him to be the best he can be and never give up! She will teach him to follow in her footsteps.
Dylan will teach Cass how everyone is different and everyone is special in their own ways. He will teach her patience and unconditional love.
I feel Dylan has made our whole family stronger. He has made me realize how precious life is and how, like you have said before, it can hurt to love someone so much.
I am such a proud auntie!!
BTW if you need help with your insurance let me know, I work with it ALL DAY :)
Laurie, this post is so beautiful. I never really understood how much work y'all have to do.
We have along history of deafness in our family. In fact after retiring, my dad is now an interpreter in Mass. anyway- you should really start looking into sign language if you havent already thought about it. If you are interested, let me know and I will get you some info. I started signing before I could talk and I had no hearing loss. Kids just pick things up visually before auditorialy. My 8 year old even signs -which is great talking to hee across the school gym during assembly !
I feel you...I have been feeling a little overwhelmed lately as well. Well, it is overwhelming and perfectly normal to feel this way. I also feel like my other two children have had less time from their mommy and daddy...but sometimes it is what it is and you will make up that time somehow. You are such a good mommy and you are right, you do become a stronger family unit because of Down syndrome. Thanks for posting this...I feel like it is OK to feel this way when I can read others words. I was actually going to post a similiar posting...LOVE THE VIDEO...GO DYLAN!
GREAT job Dylan!!!. Laurie, thank you so much for sharing this MOVING post!!!. You are not alone, we have days that are very overwhelming too. Because our Michelle’s heart was so damaged when she was born, she was diagnosed with Pulmonary Hypertension which needs to be monitored closely. Also, she has been diagnosed with Hyperthyroidism and therefore needs to take a hormone per life. With all their challenges our children look at us with their beautiful eyes and give us the gift of their wonderful smiles and we can feel our hearts melting because of the purity of their love. That’s when we know that we will do anything for them, we will help them every step of the way, loving them and embracing their journeys one step at a time. It’s amazing to realize that they need us as much as we need them. It is because of them that our hearts have opened and expanded so much, transforming us in better human beings. Love the video!!! :). Everything is going to be OK ~
Your outlook is such an inspiration Laurie. I am lucky to have you as a friend.
And as for Dylan, WAY TO GO ON THE ROLLING BIG GUY!!!
Laurie,
This post is perfect! I feel like I could have written it word for word myself. It is hard to keep up with everything, but what doesn't kill you makes you stronger, right? I LOVE the video of Dylan rolling over at the end of the post, that is the BEST!!!!!!! GREAT JOB DYLAN!!!
Oh, girl, I hear ya. It's definitely all presents itself with new challenges that I never thought I'd have. But it's there and it's what I do now.
We had to put $2500 on our credit card today for Benjamin's synagis shot...we can later take it out of our insurance fund or something. Ugh.
I *love* your solution of cute pj's and the camera. Because at the end of the day, he is your sweet boy, and you just need to embrace that.
(((HUGS)))
He is So darn cute!! I hear ya on the sibling thing. My Anthony hates it when ECI comes over. He has to go play Wii, watch TV, or go play somewhere other than where Sydney and I are. Bless his heart, he is such a distraction for her. We have taken to making mom-and-me dates or dad-and-me dates. Special one on one time with him. Frankly it is a good reprieve for each of us. I have my days of being overwhelmed as well. That's when I make a girlfriend date. Somehow a girlfriend knows how to pick me back up. HUGS!
Great post! We very much had a "hard work" day today and it can be so discouraging. It's nice to know there are others out there experiencing the same stuff. And what the heck, we had to put $400 on the credit card yesterday for synagis. Ugh.
Yay Dylan! Lookin' great dude!
He's so adorable, Laurie. Kailey always gets a kick out of watching the videous with me.
And yes, I agree...it's hard work, but good work.
I loved this post.
The paperwork will subside as he gets older. So will all of the appointments. It's all so overwhelming the first year, but it definitely tapered off for us, and I bet it will for you too.
Yay on the rolling!
I hear you on the paperwork. I cannot tell you how many EOB's I have laying around on my desk. It's totally crazy!
I just have to tell you that Dylan is DARN cute! I adore him!
Oh, gosh, I'd love to just kiss him! He is so darn cute, and always seems to be smiling :)
Hard work? Yes. But worth it. I don't have to tell you that.
The jammies picture is so cute! How do you get any of that hard work done when he is so snuggablishes?
My issue of late is that things have calmed down and I see Macy's progression, but it feels so slow at times and when I take a moment (or more) to relax I feel like I should be doing something to stimulate her. I have to learn to cut myself some slack, but still! I keep waiting for the next bomb to drop (like yesterday when we call from the doc saying her TSH was high, sheesh).
Macy's PT did say that she is mobile she is doing a lot of PT on her own just my exploring around Dylan will be there soon!
That is an awesome video. It's great to see the progress he is making and it's all because of the hard work you are all putting in.
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