Photo of Dear Son at summer school last July. He loves the pool or rather, he just lies in the water and floats for 45 minutes while his aide holds him the entire time. He zones out the entire time. He can't wait to get in the water though and as soon as he gets to his "spot" in the water, he closes his eyes and doesn't open them until it's time to get out.While Dear Son was in the Intensive Care Unit last month, I had plenty of time to reflect on his life. As time goes on, his lungs are getting progressively weaker. He can no longer sustain either the Bi-Pap or C-Pap machines and there was much discussion as to whether he could survive an extubation, had he been placed on a ventilator. His throat muscles have deteriorated that he hasn't been able to process his secretions for some time now. In 2004, he got the g-tube, in 2006, he went on g-tube feedings and hasn't been able to eat anything by mouth since then. In addition, they tell me that they think he aspirates all the time. I have known for some time now that he has a progressive condition and that he will not recover. It is my understanding that he will most likely die from pneumonia so every hospitalization is like a race against time. As he lie in the bed, I felt that life for him, just hadn't been very fair. Any mother wants her child to have a good life, wants her child to be happy and to have it all. Dear Son however, has had almost sixty hospitalizations in his seventeen years. Far too many, if you ask me. Each time, we get a little closer to the end and I worry that one of these times, it will be over. I decided when he was there that I wanted to make sure that we would do something really fun while he could still enjoy it.
Last Sunday evening, I decided to check out the, "Make a Wish Foundation". I read the requirements and Dear Son easily met them so I completed the online form. On Monday, the local office called and on Tuesday I returned the call to the foundation. They asked me a few questions including his diagnosis and his doctor's name. They faxed a form and called his pediatric neurologist and by 10 a.m. on Wednesday morning, Dear Son had been approved for a wish.
While the other kids splash in the pool, Dear Son just floats the entire time.
Volunteers for the, "Make a Wish" foundation will come here within the next thirty days to discuss his wish and it will take three to six months for a wish to be granted. Now comes the hard part, picking a wish that he will love. And that's where I could use your help.
Dear Son loves people, animals and loves the outdoors. He loves swimming (o.k. maybe just floating in the pool) and country music. I think I would like to take a trip somewhere with him (his father will go on the trip as well) since the only place I usually pack for is the hospital. Also, since it's so hard to get around, it would be great to have someone make the trip easier for us. I have thought it might be fun for him to swim with the dolphins or to go to Nashville or some country music place. I'd also love it if he could get a therapeutic massage. I'd like him to have a lot of fun and to be pampered. If you know of someone who had a trip or if you have any ideas for him, I'd love to hear them. Dear Son has no real use of his hands or arms, can not speak, is not toilet trained and can not stand or weight bear at all. Keep that in mind as you think about things that he may enjoy.
Finally, Dear Son will be out of school until summer school starts on June 22nd. I probably won't be posting as much since I will be caring for him 24/7 on most days, along with work and doctor appointments. I'll do the best I can. On Monday, he'll receive a $3,000 custom back to his wheelchair that will better support him now that he can no longer sit up without falling over to the side.
Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. He also appeared in the Journal of Neurology a few years ago.
18 comments:
That's wonderful! I have an idea: have you heard of the Disney Animal Kingdom Resort? The hotel is actually inside the animal sanctuary and you can see the big animals from your hotel room. Of course there is also a pool!
I thought of Animal KIngdom, too. And Disney also has two water parks with very long lazy rivers. I wonder if they could shut down part of it so Dear Son could float around?
I saw this and went, yippeee! Several choices. Opryland Hotel and the Grand Ole Opry, and LOIS! (yep, I live in Nashville)
:-D)
They also have a great small zoo... and y'all can take a ride on the General Jackson showboat! Oh and the hotel has a HUGE outdoor swimming pool!
Did I mention LOIS!?
Drop me an email if you have any questions about Nashville.
Oh, such wonderful ideas!
Lois-If it's Nashville, I'll let you know so we can hook up. We have another reader, Suzanne, in Nashville that I'll try to contact as well if we go.
Nashville is a lovely city. I visited there one Thanksgiving and really loved it. It was in the 70s the entire time!
DM,
ask about a trip to Disney that could encompass many of these things...PLUs a visit with barney. Kids on MAW trips get to go basckstage to meet Barney, and they truly make it memorable. You could request a hotel that is themed according to his likes, music or animals, etc. I know they would find a way to get him a massage, and they would likely put you up at Give Kids the World village, it is the most incredible place on earth. SO many things he loves could be in that one trip, and they truly pamper you, too. Something to consider!! I am so excited for both of you.
As much as I LOVE Disney...really, really love it....my first thought was Nashville. I think a trip to the Grand Ole Opry would be so perfect. Perhaps there is a water park near there? I'm not from that area. As a country music lover myself, I can tell you that many country stars are very involved with children and wishes.
Best of luck with whatever you decide. I know that dear Son will love spending time with his folks doing something special.
Dream Mom- Please give real consideration to a Disney vacation. The Give Kids the World Village is exactly where you want to be with Dear Son's needs. It is ENTIRELY accessible, with medical staff on site. They will move heaven and earth to make your stay wonderful, for both Dear Son, and you and Dear Sons dad.
My step-daughter was granted her wish to go to Disney in November of 2002, everything was set, with plans to stay at Give Kids the World. She had the first seizure of her life at O'Hare, on the way to get on the plane. Needless to say plans were canceled, as she was taken by ambulance from the airport. We have not given up hope that the trip will still happen- just trying to get all health issues stabilized!!
All the best-
Deb
Dream Mom- I just went on the GKTW site. Apparently, they do NOT have Medical staff on site. I seem to remember being told that they did.
Still, this is the place to be with Dear Son- his physical needs are easily met at this wonderful place.
Deb
Dear Dream Mom,
we love everybodies ideas. What a nice thing to do, to do something fun with your dear son.
I hope that your plans go smoothly. Maybe the make a wish people will be helpful with suggestions too, as they must of helped lots of families.
Big hugs from us
I have a friend whose daughter was granted a wish and they went to Disney's Give Kids the World Village.
They absolutely loved it. Their daughter was treated like a VIP and everything was accessable.
They did bring their own nurse but their daughter requires 24 hour nursing care.
MAW does so many Disney World trips that they do them very, very well as opposed to getting them to do something that is brand new to them. If they will house you at Give Kids The World, there is much there at that resort that Dear Son can enjoy even during his down time. You can also request a meet the Dolphins at Seaworld during the trip, there is the Animal Kingdom, lazy rivers, waterparks, and many music shows.
Whatever you pick, he will enjoy, I am sure.
Dream Mom, Disney would be our pick. I have yet to take my own Dear Son there but hope to some day. He would love the music from all of the speakers at every park and he'd especially like the EPCOT fireworks/laser show with MUSIC. While he couldn't ride most of the rides, there is so much else that he would enjoy, and the service and accommodations you'd have just can't be matched anywhere else.
We did take our son to Nashville back when Opryland was there, and he liked it. However, at the time (many years ago), it was difficult to maneuver his wheelchair through the Opryland Hotel. It's accessible (in a fashion), but we had to go through different corridors to get to the different levels. We couldn't just take an elevator up from one floor to the next. We were able to tie down his wheelchair on the indoor river boats, but the great big outdoor pool had steps down to it, and I had to carry him part of the way to the pool. Plus, we had to go through a "maze" just to get there from our room. Not convenient at all! Hopefully, all that has changed since we were there, but please check it out before heading to Nashville. I agree that he'd enjoy the Opry though.
Have fun wherever you go!
If this is a vote, I vote for the Disney Animal Kingdom Resort. It's such a wonderful place for kids with all the animals and fun activities. I am sure that the Make a Wish program will do all it can to ensure that Dear Son have the best, most comfortable, and memorable vacation ever. Don't forget to enjoy yourself too, you deserve it for being such an extraordinary mom.
My daughter's wish was granted to 'see the Mouse', and we went to Disney World. The GKTW (Give Kids The World) lodging is incredible, as others have mentioned. And Disney is even better. They will move heaven and earth to make your son's visit special.
I have a friend who just did their MAW trip for their son to Disney and stayed at Give Kids the World. Completely accessible, kids like our kids everywhere, so you don't have to get "those looks." They also included a swim with the dolphins in their wish. It is an amazing story. Evidentally, the dolphins pick who they want to swim with, and Capricorn, the special needs dolphin, picked little D. They did not know D was coming, etc. but Capricorn went right too him. Dad said it was the most most amazing thing ever, for 20 minutes their son was just a regular kid. She has a blog. I will see if she minds me sharing it with you.
Thank you all so much for such wonderful input! The volunteers from the Make a Wish program will be here in a few weeks. I think the Disney vacation sounds wonderful and it would emcompass a lot of things he would enjoy. I am going to print off these suggestions and talk to them about it. I am so thankful for all of these suggestions!
We'll speak with them and I'll give you an update once it's been confirmed! I think we will try to go around Dear Son's 18th birthday, which is in November. What a fun time that will be! I think he will enjoy this trip! Yay!
I'm th mom that Angie was refering to. I'm just now for some reason checking out your blog. I'd love to answer ANY questions you might have about Disney and the swim with the dolphins. I think it would be a perfect match! Maybe they could even see if any Country Music concerts were in Orlando at the same time. They are miricle workers! I remeber being so worried that they wouldn't have what we needed. They rented a handicap van for the week for us and made sure all "special" equiptment was there. YOU just have to ask and say you need it. I remeber thinking we don't deserve this and they can't possibly have all we needed, I was so wrong! They catered to our EVERY NEED!!! At GKTW they are putting in a BRAND NEW pool that should be done real soon. And the whole dolphin experience was truly amazing for the ENTIRE family! It was moving and really let us be a "normal" family for an entire day!!! PLease, please, please consider the Disney Trip!!!
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