I received my Progeria newsletter the other day and there were a few sentences in there that jolted me into the reality of the life span of the lives of the Progeria children. There is no way that any of us can fully understand that burden. Parenting is watching your children grow and dreaming of their future.
That is it in a nutshell. Parenting is anticipating and enjoying all those milestones. Typically we expect tooth fairies, t-ball, school plays, drivers licenses proms, boyfriends, sleepovers, college, marriage and eventually grandchildren. Obviously this is not a given in any situation. Things can change very quickly but to raise children knowing that will most likely not happen is very painful. Although you might say that you do not think about those things on a daily basis, I would argue that it is always there, as a framework of reference. It is like oxygen. You don't realize how much you depend on it until it is taken away. And the physical symptoms, the unattractiveness of the clubbed fingers, wrinkly skin, protruding bones, hair loss and distended bellies, they are reminders on a daily, minute to minute basis of how Progeria is taking all that away.
That being said, I continue to have hope in this treatment and future research. I honestly believe there is a reason that we had a second child with this same disorder. Maybe I am sounding crazy but in my mind, I think Bennett having this condition allowed us to get a diagnosis for Nathan and move at lightening speed to a possible treatment.
Here are a few more pictures from our trip. I tried to do a slideshow through Photobucket but then was unsucessful in getting it to show up here. The first few pictures are from our stay in Rhode Island. We did the Ocean Drive and got out at one spot. Mark took the big kids down on the rocks and I stayed with Bennett who was parked in the stroller. Eventually Mark came back (leaving Nathan and Libby on the slippery rocks) and took Bennett down. Surprisingly he loved the water!! He hates baths and screams when you go near the bathroom but loved this dirty water!!! Who knows with this kid?
The last three pictures are of our room in Boston. It gives you some idea of the size without all of our stuff. With the cot down there is a 10 inch path between the two beds. The pack and play sits behind the door so that you can't fully open the door and have a small path between the corner of the packnplay and bed. Surprisingly, it was not bad with all five of us in there!! It was a disaster but didn't really bother us. The main problem is that the door is heavy and does not stay open making it tricky to get in and out with little kids and carrying things.
Once again I asked the kids about their favorite part of the trip. Nathan said, "What trip?" and then said his favorite part was the aquarium. He also liked throwing rocks in the water on Ocean Drive and seeing his favorite nurse Miss Ivy. The part he did not like was "nuffin." Libby said her favorite part was the Cliff Walk which just about made our heads explode! She complained the whole walk because she was "hot and tired" and wanted to ride in the sit and stand stroller. "Why does Nathan always get to sit? Why can't I ride? It's not fair. I'm going to walk really slow".....and on and on. So if that was her favorite part, she must have had a really good time! She also enjoyed the aquarium, the hotel pool and seeing Toy Story III. Her least favorite was the whole day at the hospital on Tuesday.
We decided to try to figure out what Bennett's favorite and least favorite parts of the trip were. The kids figured his least favorite part was getting bloodwork done and never being able to get down on the floor (tough age). His favorite part was a little tougher to determine but it would have to be the aquarium because he was gigglling out loud at the fish.
I love walking the two older ones through places and keeping them with me like little ducklings.
I love when Libby gets off the bus and runs to me with her arms wide open!
I love watching Bennett's little mind work, turning toys over in his hands and trying new things.
I love spending time with Nathan one on one when I have no where else to be and hearing him talk about all different things.
I love teaching them new things and watching them accomplish them.
I love hearing Nathan and Libby whisper because even if they are plotting revenge on me, at least they are not fighting.
I love when Bennett reaches out for me (which is rare because he is in love with his Daddy).
I love laying down at night with each of the kids. Libby talks about things she is hesitant to discuss during the daylight and Nathan's smile is sheer joy!
I love when Bennett giggles at the big kids.
I love teasing the kids and playing jokes with them or plotting against Mark in silly ways (lets pretend the television is not working or lets pretend we forgot to get Daddy a gelati).
I love loose teeth, tooth fairies, Santa Claus and the Easter Bunny.
I love telling Libby her adoption story and how God brought us together.
I love the crazy outfits Libby puts on sometimes and comes downstairs as if it is perfectly normal.
Most of the time I love the chaos that is having three little ones.
I get angry because I love being a mom, but I can't just be a mom. I have to worry about all these other things. Being a mom is pretty much all I ever wanted to do when I grew up. I much prefer Friday nights at elementary school concerts over hanging out at a bar or fancy restaurant. This is what I always wanted and the stage of my life I knew I would enjoy the most. Being a mom is a pretty cool thing.
So here are four more of my annoying photo collages. I can never pick just a couple pictures so putting them in a collage seems better than uploading so many pictures. We have been busy! We finished up at the hospital, got all of our medicine for the next six months and managed to squeeze in some fun too. Our goal of showing Libby how boring this is was not successful. The appointments during this six month visit are probably 10% of the ones at the annual visits. In between (which we didn't have at the January visit) she played on the playground, played pac man, visited the "treat train", (ice cream sundaes), ruled the television in the hospital room and picked prizes from the prize bin. Plus we stayed an extra day and had even more fun. Tomorrow we are going to Newport RI and staying one night there. I'm not sure what we are going to do there, possibly the Cliff Walk. All Libby and Nathan care about is swimming in the hotel pool.
So, back to the pictures.... The first two collages are pictures from our visit to the US Constitution and US Casin. It was really cool. The top right picture iin the second collage is from a plaque in the museum at the US Constitution. Libby saw it and was pretty sure that it was the ship pn which Zach and Cody live. Nathan went up and down those steep ladders!! It was neat to hear Libby reading all the informational plaques at the museum and on the ships. She has changed so much in the last year! Thanks Aunt Jodi for the recommendation!
This is a couple pictures from the playground at the hospital. Libby was playing too, but the pictures of her turned out fuzzy. They were playing basketball with a tiny ball which was a size of a superball!! The last collage is just a couple pictures of the kids. The big one on the left is obviously Libby in front of the Libby Building. It was her idea to make a sign saying "That's Me" with an arrow. I thought it was a great idea, but we didn't make the letters quite big enough. And of course Libby and Nathan with Mickey. I have already tried superimposing it over the picture from five months ago and Nathan doesn't look much taller.
So not much news on the medical front. We just did bloodwork several times to check levels and then we were on our way! The boys fasted overnight on Tuesday night and got their infusions of Zolodronate on Wednesday. We are still trying to work out a few kinks with getting the right amount of calcium and the possibilty of taking aspirin daily. The other interesting thing that Dr. G told us was that Nathan and Bennett may not ever lose their baby teeth. If they do, it will be very late. We kind of assumed this since they are taking so long to come in, but it is still not fun to hear.
Last night Mark took the big kids to see Toy Story III and today we went to the aquarium so the fun continues!! We met up with one of my friends from college which was really fun. I'm not sure why, but I didn't take my camera along. It has been great having the car because we got to see alot of the city. It is a very pretty city, however, driving is pretty treacherous!! Yesterday we got lost for over an hour, going back and forth over the same bridge at least three times.
Thank you so much for all your prayers. We have had a great trip and really enjoyed our adventure. I am very proud of us for all that we do with three kids!
We made it to Boston after a very long, slow drive. There was alot of traffic off and on from New Jersey all the way through to Boston. We only made one stop about five hours into the trip. Libby thought we should definitely take a plane the next time.
I cannot say enough about how nice everything and everyone is at Childrens Hospital of Boston. Nathan's favorite nurse is here and taking good care of us. They make every attempt to make things child friendly. Yesterday we were here from 9 to 3. Today is a longer day. We got here at 7:45am and will be here until around 5:15. The testing this time around is pretty minimal. Yesterday they only had height/weight and some other measurements. In the morning we met with Dr. Miller to review events of the last five months. In the afternoon we met with Dr. Gordon who reviewed the baseline tests. There was nothing significant in the original testing, nothing significant to her. For us, it is surprising that the results are typical of children with classic progeria. The narrow clavicle, slight hearing loss, high glucose levels and something about squiggly something in the brain (I can't remember) . Anyway, it's weird how we want the boys to be similiar to kids with Progeria so that we could be included in the study but we want them to be different so that our boys can live longer than kids with typical progeria.
Most helpful was that Dr. Gordon listened to me cry about the boys. She said she had a very difficult time for many years and that it is still fairly new for me. She said I am being too hard on myself thinking that I should be able to accept this diagnosis within one year. She also said there are plenty of other families that have bad days too. She also recommended sort of socializing with people in the special needs community which is kind of difficult because we are fortunate that Libby is a typical kid which requires us to travel between both worlds. I think that is the most difficult, moving between "Italy and Holland." Within our house things are pretty good. Sure Nathan and Bennett present some challenges at home with mobility and requiring more supervision, but when we go outside, there are many more reminders.
All in all things are great here. Thank you for all of your prayers.
Libby keeps telling everyone we are going to Boston. Their response is always, "oh have fun" to which she responds, "no, it won't be fun. We are going to the hospital." And then for people who don't know our situation, there is an awkward silence and I say, "We are going for medical treatment." I can't help but think my kids should be playing little league and having fun instead of spending three days being poked and prodded in a hospital but we will try to make the best of our visit. If the end result is them being healthier and living longer than it is all worth it. No, it is not fair, yes they shouldn't have to go through this, but its actually all they know.
The truth is, the researchers don't even know why these gene changes result in the children having some characteristics of aging and not others. They have come so far in ten years, from knowing nothing about progeria to discovering the gene and conducting clinical trials with possible medications; however, these kids don't have ten years to wait. We are praying for a miracle cure to stop the progression of this disorder. I know that God has a plan for our family. At this time I am still hoping it is the same plan as ours, for our boys to get better. I am still not at the place where I can embrace the alternative. I know I said I was, but I am not.
Developmentally, Bennett is kicking butt!! He is crawling as you know and pulling himself up. He is cruising around the coffee table and couch and stands for a second without hands while leaning against the coffee table and couch! He transitions from sit to crawl and from crawl to sit with relative ease!! These are things that Nathan never did until after learning to walk. Nathan walked when he was 20 months old and I could definitely see Bennett doing that too. He does not have any teeth, which I find to be so frustrating but the development is fun to watch! He even tried to climb the steps the other day when we were upstairs without him! Nathan was responsible for making sure he didn't get to the steps, a job he thoroughly enjoyed. Now we put him in the exersaucer Bennett finds really insulting!!
Seeing as how I cannot help myself comes to terms wiht this, helping Libby navigate her world seems insurmountable. We already have the issues of adoption. Other children are often more curious than she is about her adoption. There have been several times she has spent with other kids who have asked about it and she didn't know how to respond, "Do you miss your birthmother?" is one that I can remember but there have been others. One time we were at a picnic and there was a woman there with a name similar to Libby's birthmom's name. For the entire picnic, Libby thought that was her birthmom! Thank goodness she told me because her mind must have been racing. What about the day when someone tells her that her birthmother did not want her? I know this is not true and we have certainly told Libby that but how does that not hurt? Speaking of, someone once told Libby that she is special because she is adopted. I just don't know if that is the right approach either. Something tells me that Libby should feel special because she is Libby and not because she is adopted.
And then there is the issue of her brothers. Will she be embarrased of them? Will she feel like bringing friends over to the house? When she had color day a few weeks ago, I asked her for the first time if she minded that Bennett and Nathan would be there too. She did not which I pretty much expected, but it was the first time I hesitated and felt the need to ask. A few weeks earlier than that, there had been an incident at school. Libby's best friend (we'll call her Jen) told her that her brothers were dying. Libby ended up in tears as well as Jen, the teacher and eventually Jens mother and myself. This comment was purely innocent. Jen's mom told her that Nathan and Bennett were sick. Jen associated that to mean they are dying because everyone she knew who had been sick, had died-grandparents, cat etc. Jen's mother felt terrible and was apologizing like crazy, but no one did anything wrong. It is just one of those things. Its hard for me to describe what Nathan and Bennett have to Libby. They are not really sick but they do have a medical condition that get worse with time. Eventually everyone will die, but Nathan and Bennett will most like die before the rest of us. So for now, we just have to wait it out until Libby and her brothers are old enough to process more information about their condition. So Libby has a tough road ahead of her and of course I feel responsible.
I still have to update you all about our sickness this week and Bennett's doctor appointment on Monday. I just can't seem to shake the funk this week.
What set me off today? I'm not sure. I think the impending trip to Boston, coming off the high of fundraising and looking at the boys. Last night I saw Bennett sitting in the kitchen and it felt like I was looking in the mirror. I don't know if it is because we waited through infertility or not but having a child look like you is a pretty cool thing, no matter what people say. Knowing that is temporary is difficult for me to digest. I cried much of the day about the boys. Then when I start to wallow about their condition, all the other stuff comes back, the infertility, the whole adoption process and prematurity. All the stuff I missed out on as a result. At times it feels unbelievable how we have had one challenge after another. When I allow myself to feel sad and cry, it begins to feel like so oppressive, like I am under a heavy wet wool blanket and cannot find my way out. But somehow I do, a little slower than usual, but I am out.
About the fundraising. I am so unbelievably touched that we doubled our original goal!! I never expected people to come out of the woodwork and donate so much money. And like I said before, it is also the number of people who donated that means a lot to us. I feel bad about being down when you all have done so much to support us with fundraising. You are probably thinking, "I donated money, what does this girl want?" Well we do not want anything more from you all. We get everthing we need from you, love, support, understanding, kindness, babysitting, listening, trying not to say the "wrong" things, space when we need it and of course prayer. We cannot ask for anything more. You are doing all you can and I am still just so stinking sad.
PS. I wrote this blog yesterday, Monday, and after rewriting it several times, I wondered if I should publish it because I am feeling a little bit better today. I decided that I will because I want people to know that if my house is a mess, I didn't return that phone call or if I seem distracted, that this might be the reason. Everything is a struggle on some days and maybe the day in question was one of those days.
Having a child with a progressive disorder is such a unique situation. When I am around others with children with special needs I feel like we share a sort of comradary Yes, we are still in the minority as most people have healthy kids, but it is comforting in a lot of ways. We've all dealt with "the diagnosis" and therapists, medical visits, IEP's etc. But even within that small group I feel like we are isolated even more by the nature of the disorder. There are quite a few families who have children with Down Syndrome, Autism and Cerebral Palsy. I often wonder how much dealing with a progressive disorder affects my ability to accept our situation. After all, it is constantly changing. It is such a confusing thing when we are working and making progress in the typical developmental areas but fighting against the body's natural aging process. I am not saying our situation is worse than others or harder to deal with than others. Like I have said before, I am thankful that our kids have physical limitations rather than cognitive/emotional limitations. I guess I just am hard on myself sometimes for not being as optimistic as other parents of special needs kids, but I need to be a little forgiving and realize that there are few other people who have walked in our shoes....let alone twice.
Please don't worry about the tone of this post. I am not down and depressed, just reflecting. I cannot thank you all enough for your donations that will hopefully stop this progression and allow our children to lead full, long lives! I am overwhelmed not only with the amount of the donations but also with the number of people who donated from all areas of our lives. There have been friends from childhood, high school and college who have donated; former coworkers, people in the community, our church, friends in our church and friends from the church in which I grew up; strangers who are friends of friends and of course our wonderful families. (This is starting to sound like an acceptance speech!) Anyway, like I said, I am overwhelmed with everyones generosity and I feel like I can't thank each and every one of you enough. We feel the love from each donation that was given in honor of Nathan and Bennett!!
This is typical Bennett!! Its a chocolate chip cookie! Having the haircut has helped with the mess, but it is still a challenging clean-up!
Everyone is doing well except for me today. Yesterday I was on the way home from my friend's garage sale and my eye started to swell. This morning it is a little bit worse, swollen about halfway shut. I have no idea what happened!! I'm thinking maybe I got a misquito bite or something. I look hideous!! I'll be in hiding until this improves!
Actually last night Memaw and Pop pop Falcone came over to watch Bennett while we went to see Shrek 4. I agreed because the movie theater is dark and plus we wore 3d glasses! The movie was really really funny. I actually think we enjoyed it more than Nathan and Libby! Mark was laughing so loudly which made it even more funny! I have to take a picture of Nathan with the large 3d glasses. He was really funny.
Bennett pulled him self to a stand on several occasions now! It is really cute! In fact, he is really cute. I am getting used to the haircut and think he looks adorable! His teachers at school were not pleased with us! They just shook their heads when they saw him this week and the older lady said, "He's not our Benny!" His teachers are really sweet and love him dearly. I think it's so cute that they call him Benny!
Ht: 3'10 inches
Wt: 48 pounds
Libby had her seven year well-check today. She is wonderfully healthy! Dr. L said she is charting to reach a height of 5'2"!! Yayy!! One of our kids might crack 5 feet! She is in the fifteenth percentile for height.
Nathan and Bennett had an appt with Dr. B, GI doctor
Bennett: Ht 29.5" Wt 17 lbs 7 oz
Nathan: Ht 3' 1" Wt 28 pounds
Nathan is doing great! He is actually on the charts in the 5th percentile!! Bennett weighs the same as he has been for months! He went to the appt wearing his o-3 shorts. He is 18 months old (16 months adjusted) and still has no teeth. I am so frustrated with the stagnation. I was pretty relaxed about the teeth thing for a while but its getting a bit ridiculous. I guess I worry that it means the medications are not working but I know that is not necessarily indicative of the efficacy of the drugs. The thing is that Bennett eats twice the amount that Nathan eats currently. If we get McDonalds, we have to cajole Nathan into eating one to two nuggets and Bennett will easily eat three nuggets.
Can you tell I am feeling a little down about the boys? I think I am happiest when I am in denial. Whenever it really starts to occur to me that they have a progressive disorder or the possibility of them not being cured, I start to sink a little bit. I have been so thrilled with Bennett's crawling and moving around that it has kept me feeling positive. But seeing the kids in his class (with whom he started in December) walking and running through the halls of UCP has been bothering me a little bit lately. Other things that knock me back into reality are things like being involved with Make A Wish (even though it is wonderful) or when someone listens to our story and offers the appropriate amount of empathy. Then I remember just how bad this really is.
But........we are 93% of the way to our goal of $3000!! I cannot believe it!! And it's only June 2nd! Thank you so much to all who have donated and for passing it on to others! I am really excited to be able to help generate some money for PRF!