I don't even know where to begin sometimes. There is so much in my head threatening to spill out and I try to marshal it, corral it, and rein it all in, but often it is too much.
The death of Blake has naturally hit our little community hard. The WS-mommy bloggers (as I refer to us) have been together for some time now. I think I was the first to start three years ago, but our numbers have exploded over the past couple years. There are so many of us now I cannot keep up with everyone (thus why I only have a select few linked on my blog). It's amazing to have this close group of friends, the majority of whom I have never even met in person. We have been there for each other through it all - the highs and lows, the triumphs and challenges. We have counseled, supported, and loved each other on the phone, via e-mail, through our blog posts and comments. We have been there through those tough days, nail-biting tests and evaluations, multiple echos, caths, procedures, and surgeries. But this is the first time we have experienced death in our community. That one of our precious children is gone. And, at least to me personally, it has sent me reeling.
My heart just aches for Whitney, Troy, Brandon, and their family. I cannot begin to fathom what they are going through. I pray I never have to find out. Yet I know this has been another dose of reality of how fragile many of our children are. Last night, as I said my final good-nights to Jamie and Clare, I leaned into Clare's bottom bunk. She was sitting there in her blue airplane hand-me-down boy pajamas, her crazy curls standing on end, and wearing dress-up earrings, a bracelet, and a ring (which she must have smuggled in her bed sometime during her afternoon nap). She looked so beautiful, so sweet, so tiny. I gave her a big squeeze and whispered, "Mommy loves you so much." She touched my face and whispered back, "I love you." That's what keeps me going.
Friday, February 29, 2008
Wednesday, February 27, 2008
In Memory
Baby Blake
July 6, 2007 - February 26, 2008
Your time in this world was not long, but what an impact you made on us all. You are loved. We are praying for you and your family.
Tuesday, February 26, 2008
Blurb
In our own little neck of the woods, Simon is back on his feet. His lungs, ears, and eyes were clear at the doctor's yesterday, and his oxygen levels were back up to 99. Jamie and Clare only got a touch of the sniffles, as did Shawn and I.
In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.
Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.
In my larger WS-community, however, life is not as good. It makes me feel helpless that, many times, all I can do is tell someone I am praying for them. I am such a do-er kind of person - making meals, watching kids, anything to make someone's life a little easier in the practical sense when faced with such hardships. I cannot take away people's worries or stress or fear, but I can make sure they don't have to be concerned about getting dinner on the table. However, being far away from the majority of our WS-blogging mommies, I wish I could do more. All I can say is that my prayers are serious. We have been saying the rosary as a family every night this Lent, and there have been many special intentions for our WS-friends out there. We continue to keep you in prayer.
Update - Ava is home now and slowly on the mend. Thank you to all my family and friends who keep our friends with Williams syndrome in their thoughts and prayers as well.
Thursday, February 21, 2008
Reality Check
As I mope and complain about how tough things have been around here lately with illnesses, I have to stop and think about those who would give anything to just be at home with their kids right now. As I write this, I am thinking about Baby Blake and Ava - two kiddos with Williams syndrome who are currently in the hospital and have been for some time. Ava is very sick, Blake is fighting for his life, and it hits me hard with a dose of reality. It reminds me that I need to take a step back and count my blessings, not my woes. To hug, love, and kiss my kids even when I am fatigued, and thank God that we are (relatively) healthy. That Simon is slowly getting better and did not end up in the hospital. That Clare has gone five months without needing a cath. That Jamie is running around, playing, and being his normal bundle of energy. I say a special prayer tonight for those two children and offer my challenges, frustrations, and worries of the day as a sacrifice to them.
Tuesday, February 19, 2008
When It Rains
... it not just pours, it's a monsoon.
After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.
After battling various illnesses over the past three weeks, Simon was diagnosed with RSV and bronchial asthma yesterday. After running around town to find a nebulizer last night and getting our baby breathing easier (his oxygen levels were low), I took him back to the pediatrician today for a re-check of his lungs. Now it is not RSV, but pneumonia. Plus another double ear infection and a double eye infection. With Simon and Clare combined, I am administering 20 doses of medication daily plus nebulizer treatments every four hours. And Shawn is away on business. Join my pity party please! And pray for Simon to kick this pneumonia and be back on the road to health.
Saturday, February 16, 2008
First Haircut
I need a haircut! I can't go around and let the girls see me like this. What is that thing sticking up in the back? I look like such a baby with this hair.
Hey, this is fun! Wow! A big boy haircut. At the same place and with the same woman that Daddy and Jamie go to. I am one of the guys now. Woo hoo!
Actually, you know what? I really am all done with it. This is no longer fun. No, I mean it, quit holding my face, pulling my hair, spraying water on my head. Just stop it. NOW!
The finished product - a handsome 9-month old with a big boy haircut. (Or as Daddy likes to call them - My First Mugshots.)
Thursday, February 14, 2008
Busy Week
It's been a busy week in our household. Clare has had some sort of thing going on every day, we've had some wicked weather, and poor Simon is still sick.
Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!
My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)
Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.
Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.
One day and counting until the weekend!
Between freezing rain, icy cold temperatures, snowfall, and flooded streets, we've been fairly housebound all week. Jamie had a snow day on Wednesday, so three days in a row without school has been tough. He is definitely at the age where he is not content to just be at home all day with me and the "little" kids anymore. Everyone goes stir crazy being cooped up in the house all day. With Simon being sick, plus everywhere you go is a sheet of ice these last few days, it has not been ideal conditions to even take a break by going to the bookstore, mall, Target, anywhere!
My sweet happy baby finally turned into a monster. I jinxed myself by bragging what a good boy he was even with all his ailments. By the weekend, he spiked a fever and was miserable (to put it mildly). He stopped taking naps and slept horribly at night. By Tuesday, he had also developed a deep, hacking cough and sounded wheezy when he breathed. So it was back to the doctor's office to add diagnoses of a double ear infection plus a worsening skin rash, which in turn means antibiotics and steroid cream. Slowly we are seeing our Simon come back to us from this red, speckled, unhappy baby we have had all week. (Spattergroit, anyone?)
Clare has had a busy week. Besides OT on Monday and PT on Tuesday, the feeding team came out on Wednesday, and she had her special education evaluation with the school department on Thursday. The feeding team spent an hour and a half at our house, and the only thing we got out of it was to try adding pureed cauliflower to Clare's macaroni and cheese. Shawn and I were not as impressed with the feeding team this time. We both feel Clare is at a point now where she physically has the oral motor skills to eat almost every kind of food. However, she is at the picky, opinionated 2-year old phase of life, and we see her exerting her control over what she eats and, more importantly, does not eat. Clare does have a lot of sensory issues going on when it comes to food, so her OT has been working weekly on that with Clare. I think Wednesday was our last visit with the feeding team. Although they scheduled a six-month follow-up for August, I just don't feel the need to have Clare seen by them anymore. I feel it is a waste of time for everyone involved. Clare will be discharged from Early Intervention in six weeks, but we have already arranged with her OT to continue feeding sessions once or twice a month. They have a good rapport and her OT is enthusiastic about coming up with new ways to get Clare to at least explore different foods, so I feel comfortable continuing with this route.
Since Clare was already evaluated by OT, PT, and speech last month, the school department only needed an evaluation done by a special educator. The educator did the same tests that Clare has done a million times, and Clare certainly acted like the kid that has been there, done that. For example, the educator asked Clare to stack blocks. Clare stacked two, gave a bored look, and questioned, "All done?" For each activity, Clare did the bare minimum, then stated "all done." She would then sit in the little chair with her chin rested on her folded hands on the table and just stare at the educator until a new activity was presented. I thought it was rather comical. I am not too concerned about what the educator writes up because Clare's January evaluations are very thorough. The next step is to meet with the school department's team, go over the results of the evaluations, and discuss Clare's placement in the preschool. Then one week after that meeting (which is in early March), we will sit down with the team again to write Clare's IEP. Six weeks and counting until the first day of school.
One day and counting until the weekend!
Tuesday, February 12, 2008
Valentine Fund
Valentine's Day is naturally a day that is connected with hearts. While we are thinking about hearts, we always think about the heart that needs our help and support the most - Clare's heart.
"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.
With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!
"The Williams Syndrome Assocation was formed in 1982 by, and for, families of individuals with Williams syndrome. The WSA is the only group in the U.S. devoted exclusively to improving the lives of individuals with Williams syndrome and their families. The WSA supports research into all facets of the syndrome, and the development of the most up to date educational materials regarding Williams syndrome." (from the WSA website) The WSA has helped our family personally by hosting events where we have had the opportuntiy to meet other individuals with Williams syndrome and their families. The WSA also bestows grants to researchers such as Dr. Carolyn Mervis, who we took Clare to see this past November.
With your help, our dream of a better future for individuals with Williams syndrome can become a reality. Please send your love to Clare this Valentine's Day in the form of a contribution to the Williams Syndrome Association Valentine Fund. You can view Clare's Page here. Happy Valentine's Day!
Thursday, February 07, 2008
The Picture of Health
Simon is an oddity in our house. He has never been to the pediatrician's office for anything other than his well-baby visits. Unbelievable! I get questioned about how much he weighs, and I proudly declare, "I don't know!" He rarely gets weighed! He takes no medication, has no diagnoses, and is the picture of health.
So when some little bumps appeared on Simon's skin recently, I chalked it up to a mild reaction to recently introducing dairy in his diet. We cut out the yogurt, but the bumps did not go away. Then I realized that it was eczema, something that Jamie battled in his infancy as well. It was not until the rash spread over his entire body that I thought something more might be going on. Simon is child #3 and we have seen many illnesses come through our house, so I figured that Simon had a little virus that ended in a rash, which is common. Then his eyes started to goop, and the rash on his cheeks became quite painful-looking. So I finally decided to call the pediatrician and have them take a look at Simon.
And don't you know it, it's not just a rash. In fact, Simon has Hand, Foot, and Mouth Disease (complete with blisters in his mouth and throat as well as the full-body rash), an eye infection, a skin infection around his eye from the resulting drainage from his eye, impetigo on his face, and fluid in his left ear (which is not an ear infection yet, so hopefully that will go away on its own). Each of those individually is really not a big deal and we have had each one in our house at some time. But not all at once. To the same kid. So now Simon is on a bunch of medications, including one to fight staph infection (not that he necessarily has one, but impetigo can be caused by staph, so the pediatrician wants to make sure it gets treated ASAP).
Through it all, Simon remains my sweet, happy baby. He is having trouble sleeping at night, but the doctor said his mouth blisters could be more painful at night and a dose of ibuprofen before bed would help him sleep better. In fact, he was grinning away the entire time the pediatrician was examining him. Hopefully in about a week, he will be the picture of health once more.
Monday, February 04, 2008
Potty Talk
Potty-training... going fabulously! I was super nervous about even training Clare because she is... (whisper) a special needs child. With Jamie, we did the whole "sit-on-the-potty-get-an-M&M" routine for a couple months when he was about 2 years old with small success. Then Clare was born, life got crazy, we moved, and potty-training took a backseat. Or as I like to call it, we took a more laidback "when-he's-ready-to-train-he-will" approach. And Jamie did. Woke up one morning shortly after his third birthday, wanted to buy Spiderman underwear (which we promptly did), and was trained in two days. It was almost too easy. So I've been having internal freak-outs about training Clare.
One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.
Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.
One thing I knew for sure was that I was not going to use Clare's handicaps, delays, special needs, whatever as an excuse. I borrowed a couple books from the library about "toilet training your child with special needs." And there was nothing in there that was "special." Nothing! Everything they talked about was stuff we did with Jamie, which made me laugh. It also made me realize, once again, to treat Clare normally. Obviously we were not going to start physically training Clare until she could actually walk herself to the bathroom. But I started talking about it with her everytime I changed her diaper. There has been lots of potty talk in our house lately! Then we brought out the little potty and just sat it next to the big one. One day, I asked her if she wanted to sit on the potty. She emphatically stated "no" and left the bathroom. I casually asked again a couple days later and received an even louder "no no no." I had one more trick up my sleeve before taking a break. Elmo and M&M's - Clare's two favorite things. I asked Clare if Elmo could go to the potty and get an M&M. She was all for that idea. So she solemnly watched as Elmo sat on the little potty, then proudly received an M&M. Clare wanted a turn. Fully clothed, mind you, but sitting on her little red and blue throne was enough for an M&M reward.
Flash forward a few weeks, and Clare has graduated to refusing the little potty. She insists on only sitting on the regular toilet (with her potty seat on top or else I think she would fall right in!) and almost always pees. She even asks now to go "pee on potty" and, if I ask her about it, she dances around singing "potty emmies potty emmies." (Her word for M&M's.) She eagerly wants to sit on the potty now. We are working towards the big deal of doing the #2, but I am so pleased with Clare's progress. She is still two months shy of turning three. Another teaching lesson for Mom - don't shortsight my kid. Don't make excuses for her. Let her be a normal kid - potty and all.
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