Today I got an email from some birthday reminder program reminding me that "Mom Keeven's birthday is coming up, don't forget to send her a card!" Really?
March 19th is my Mom's birthday. While I can't spend it with her, I am lucky enough to be with my incredible Mother-in-Law on that day. Another reason to celebrate that day!
Each milestone that passes, I expect it to be easier. In some ways it is yet my heart is still a bit heavy from missing her. I often, more often than I admit, see someone that will remind me of my Mom in some way. I find myself doing double takes to make sure it isn't her. A family member will do or say something or pull a "that's so like mom" habit or something and my heart aches for her. There are so many things I want to tell her and share with her. Jonathan still carries around a teddy bear she got him for his first Christmas.
Every time I hear the Toby Keith song, "Courtesy of the Red, White and Blue", I can't help but think of Mom and smile. I remember sitting with Mom in their kitchen and she had that damn boot on her foot and was sitting in her wheel chair listening to the radio. She loved country music and she was singing right along with Toby and when Toby sang "And the Statue of Liberty was shaking her fist", Mom shot her fist up in the air but when Toby sang, "Cause we'll put a boot in your a$$"...Mom's boot came up and I couldn't help myself but laugh. She looked so serious and was extremely into it. Too bad they didn't send her after ole Osama...cus that was a big boot she had!
Because of Facebook I am in touch with more of her family and I love it. We talk about old times and its nice. My mom was a lot like my Grandma...a spit fire. Yelled at the TV when their soaps were on. Well I do that and the funny thing is it's the same soap they watched! I remember Grandma talking loudly and having that "yelling tone" to her voice. Mom had that and yep, I have it too. But that's okay because Mom was wonderful and I am glad to be like her and love that there is a little bit of "Momism" in me and each of my sisters.
I miss you Mom. I love you and I look forward to seeing you again some day. Until then, keep protecting all of us...you are doing a great job!
Showing posts with label Mom. Show all posts
Showing posts with label Mom. Show all posts
Saturday, March 12, 2011
Sunday, September 13, 2009
Two Years
Tomorrow, September 14, is the second anniversary of my Mom's death. Some days it feels like she just died yesterday and other days it seems like it was so long ago. No matter how it feels, the pain is still there...still fressh and the sadness still sneaks up on me when I least expect it. Yes it is a bit easier but still a lot harder than I imagined it would be.
I catch myself or my sisters using "mom-isms" or doing things that Mom did and it makes me smile. She will always be here with us and she will always be in my heart. I know that she has helped me cope with everything that has come my way in the past 21 months. And I know that as we move forward in life, she will be there. I talk to her and pray to her and ask for guidance. She had so much knowledge and experience and I just wish I could have one more conversation with her. One more time to tell her goodbye and that I love her. I did tell her all those things earlier that year when we thought we were going to lose her but I would give anything for just one more conversation with her. One last hug. One last smile.
The last time I saw her was a week before her death. We were out to dinner. She was not feeling well and seemed a bit off. So when I got the call that following weekend, that she was being taken to the hospital and she had stopped breating, in my heart, I knew this was it. I did not want to believe it and I just kept hugging my pregnant belly and praying that she would be okay or that we would all be strong enough to make it through whatever happened. I think being pregnant and having the comfort of Zachary in my belly helped me cope with her death. And we are okay. We are making it. It's hard, it's sad and it sucks but Mom left us with so much. She was amazing and I am going to make sure my boys know it. We will probably go visit her grave today or tomorrow, look at the photo album I made for her and light a candle or release a balloon. Jonathan likes to release the balloons so that our friends and family up in heaven can catch them and enjoy them. I love the thought of that too.
Mom, I love you, I miss you but I am okay. Thank you for being my Mom. And I'm trying to take care of myself like you use to always tell us to do! :-) You will never be forgotten and will live on forever in my heart. Rest in Peace Mom!
I catch myself or my sisters using "mom-isms" or doing things that Mom did and it makes me smile. She will always be here with us and she will always be in my heart. I know that she has helped me cope with everything that has come my way in the past 21 months. And I know that as we move forward in life, she will be there. I talk to her and pray to her and ask for guidance. She had so much knowledge and experience and I just wish I could have one more conversation with her. One more time to tell her goodbye and that I love her. I did tell her all those things earlier that year when we thought we were going to lose her but I would give anything for just one more conversation with her. One last hug. One last smile.
The last time I saw her was a week before her death. We were out to dinner. She was not feeling well and seemed a bit off. So when I got the call that following weekend, that she was being taken to the hospital and she had stopped breating, in my heart, I knew this was it. I did not want to believe it and I just kept hugging my pregnant belly and praying that she would be okay or that we would all be strong enough to make it through whatever happened. I think being pregnant and having the comfort of Zachary in my belly helped me cope with her death. And we are okay. We are making it. It's hard, it's sad and it sucks but Mom left us with so much. She was amazing and I am going to make sure my boys know it. We will probably go visit her grave today or tomorrow, look at the photo album I made for her and light a candle or release a balloon. Jonathan likes to release the balloons so that our friends and family up in heaven can catch them and enjoy them. I love the thought of that too.
Mom, I love you, I miss you but I am okay. Thank you for being my Mom. And I'm trying to take care of myself like you use to always tell us to do! :-) You will never be forgotten and will live on forever in my heart. Rest in Peace Mom!
Thursday, December 25, 2008
Merry Christmas
I just finished placing all the presents under the tree and realized I left my camera at my sister in laws. Bummer. But the kids (and Jason) are asleep and I'm watching the Young and the Restless. A woman on there is celebratilng her first Christmas since her Mother "died", you know she isn't really dead, but I feel that woman's pain. The pain is so fresh. Still. I thought once the firsts were over, it got easier?
Tuesday as Jonathan and I were on our way to daycare and an ambulance went flying past us and he asked me where they were going. I told him he was going to help someone who was hurt. I thought to myself, "If it isn't too late. Like it was for my mom. I hope it isn't too late for this person." That started me on missing my mom terribly, again.
Last year I obviously had my mind consumed with a new baby, a new sick baby. I remember how sick and sad little Z was. He barely ate and was so tiny and weak. I remember Christmas Day I called the pediatrician's exchange but was basically told just to wait until his appt. the next day to see what she thought. That is when our world turned upside down. I didn't have time to think about missing my mom or time to allow myself to grieve properly. I think that is why this year it finally hit me...no more Christmases with my Mom. It's like losing her all over again.
I pretty much lost it today and had my breakdown. Jonathan and Jason were very good to me. I realized what I have this year...a great husband, 2 healthy boys, a job, a house and a wonderful family and some pretty terrific friends. No I don't have my mom here but I know she is watching over me, protecting us.
Merry Christmas everyone. May your heart be light and may you find time to enjoy your holiday and forget all your cares.
Tuesday as Jonathan and I were on our way to daycare and an ambulance went flying past us and he asked me where they were going. I told him he was going to help someone who was hurt. I thought to myself, "If it isn't too late. Like it was for my mom. I hope it isn't too late for this person." That started me on missing my mom terribly, again.
Last year I obviously had my mind consumed with a new baby, a new sick baby. I remember how sick and sad little Z was. He barely ate and was so tiny and weak. I remember Christmas Day I called the pediatrician's exchange but was basically told just to wait until his appt. the next day to see what she thought. That is when our world turned upside down. I didn't have time to think about missing my mom or time to allow myself to grieve properly. I think that is why this year it finally hit me...no more Christmases with my Mom. It's like losing her all over again.
I pretty much lost it today and had my breakdown. Jonathan and Jason were very good to me. I realized what I have this year...a great husband, 2 healthy boys, a job, a house and a wonderful family and some pretty terrific friends. No I don't have my mom here but I know she is watching over me, protecting us.
Merry Christmas everyone. May your heart be light and may you find time to enjoy your holiday and forget all your cares.
Wednesday, December 3, 2008
Another daughter without a Mom
Yesterday I got a call from my dear friend M that her Mom passed away. My heart broke into a million pieces. Flashbacks of my own Mother's death came flooding back into my mind and heart. Even though I have been in her shoes I had no idea what to say for her. I was speechless. I knew that nothing I did or said could help her at that moment. I told her that I know it hurts so much and it will for a while and to allow herself to feel her pain and sadness.
I cried on the phone with her and a long time after we hung up.
Mrs. H was a special woman. When my own Mother got sick she would email me or have M ask me about my mom and she would light candles for her. When Mom died, she sent me a card and told me if I needed anything then to call her. When Z got sick, she again lit candles for him, said prayers for him and asked about him a lot. The last time I saw her was in June when I had a purse party. Mrs. H was so chipper all the time and so kind and caring. She was the type of person that you wanted to hug you because you knew it was a real hug and so full of love. I remember she held Z that night and just sat there holding him. I know she loved the babies and kids. I wish I had taken my kids to see her more. She called me a few weeks after that to see how we were doing and if I needed anything.
I get so busy in my own life that I forget to reach out to others that may need me. I know we all do it but how do we stop it?
When my mom died and then Z got sick, I learned what it is like to be on the receiving end of needing prayers. I was so use to being the one that said prayers for people that I had no idea what to say to people in need or people suffering. Unfortunately most of the time I said/did nothing for fear of doing the wrong thing. I now know that sometimes hearing "I'm thinking of you" is all a person needs. An "I'm praying for you" means more than you could imagine when it is said to you.
I hope that I can be as good of a friend to M during this difficult time that she has been to me. M if you ever read this, I love you sweetie and will always be here for you.
Mrs. H, I can picture you and my Mom up in heaven talking about your kids and grandkids. I can see you both shaking your heads and laughing at things your kids have done. Give my mom a hug for me. I'm sorry you had to go so soon. You left your mark in this world and the skies are a bit brighter tonight because you are shining down on us.
Hug your Mother and be kind to others, life is too short.
I cried on the phone with her and a long time after we hung up.
Mrs. H was a special woman. When my own Mother got sick she would email me or have M ask me about my mom and she would light candles for her. When Mom died, she sent me a card and told me if I needed anything then to call her. When Z got sick, she again lit candles for him, said prayers for him and asked about him a lot. The last time I saw her was in June when I had a purse party. Mrs. H was so chipper all the time and so kind and caring. She was the type of person that you wanted to hug you because you knew it was a real hug and so full of love. I remember she held Z that night and just sat there holding him. I know she loved the babies and kids. I wish I had taken my kids to see her more. She called me a few weeks after that to see how we were doing and if I needed anything.
I get so busy in my own life that I forget to reach out to others that may need me. I know we all do it but how do we stop it?
When my mom died and then Z got sick, I learned what it is like to be on the receiving end of needing prayers. I was so use to being the one that said prayers for people that I had no idea what to say to people in need or people suffering. Unfortunately most of the time I said/did nothing for fear of doing the wrong thing. I now know that sometimes hearing "I'm thinking of you" is all a person needs. An "I'm praying for you" means more than you could imagine when it is said to you.
I hope that I can be as good of a friend to M during this difficult time that she has been to me. M if you ever read this, I love you sweetie and will always be here for you.
Mrs. H, I can picture you and my Mom up in heaven talking about your kids and grandkids. I can see you both shaking your heads and laughing at things your kids have done. Give my mom a hug for me. I'm sorry you had to go so soon. You left your mark in this world and the skies are a bit brighter tonight because you are shining down on us.
Hug your Mother and be kind to others, life is too short.
Thursday, October 16, 2008
Must be doing something right!
There are days where I wonder why I was chosen to be a Mother because I don't feel very motherly and would love to disappear for a bit. Yes I love my boys more than life itself and I know how blessed I am but some days...I just need a break.
And then when I think I am failing as a Mother my precious 3 year old (soon to be 4!) shows me this wonderful side of him and teaches me a few things. He is a doll that Jonathan. He is a very kind boy and loves everyone. He loves to talk to strangers and is very polite. At home, he is a bit more, um what is the word, rowdy?! LOL
Since mom passed away I have made sure I talk to him about her, show him the photobook I made and tell him how much I miss her. He takes it all in and he knows who she is and that she is in heaven with Buster and God. He knows that Grandma Keeven and God are both in his heart and with him all the time. Sometimes what he knows and shares with me makes me slow down and take time to smell the roses. A few days ago I got up to take my shower, both boys were awake too so I put them in front of the tv and prayed I could squeeze in a quick shower before Blue's Clue's was over. I kept hearing noise and tried to hurry up. As I came out I asked Jonathan if he and Zachary were ok and his reply was "yes" and then he said, "Mom your Mom was here!". Wow, that's crazy. I said, "what" and he said "Your mom was here." and after asking what about 3 more times and where she was he told me "Yes, your mom was here. You know Grandma Keeven that is in heaven? She was right there by the door!".
My first thought was that someone had tried to break in but then I knew that he had seen her. Some form of her. I think Mom popped in for to check on the boys for me. Call me crazy but I think the boys see her a lot. Jonathan talks about her a lot and I love it. Sometimes I cry and sometimes I just sit and listen and smile. I love talking about my Mom and I especially love talking to Jonathan about her. Sure there are tears but its all good. He also informed me that he wanted to have his birthday party at Grandpa Keeven's house because that is where we had mine. Hey, as long as Grandpa doesn't care it's a LOT cheaper for me!
Z-man is doing great! In the past week he has changed so much. I swear he is the happies baby on Earth, even though Jonathan says we all get the grumpies and Zachary gets them a lot! He charms every person he meets. He is a special little person and I am so glad I was chosen to be his Mom. He adores JD. His appetite has increased and maybe even doubled! He loves the bottle and will now drink 7 - 10oz sometimes! This will be after he eats dinner. He is on all table foods and can chow with the big boys. He eats anything and chews really well! He is cutting 2 teeth on the top. He had a fever tonight, very low, and was a bit fussy but Daddy got him to sleep. I can't believe that in 5 weeks that little Boo will be 1 year old!
We went to see the Urologist for his follow up appt and he said he heeled up very nicely and has good skin! Despite the wee bit of diaper rash he had going on. He drinks from the sippy cup and bottle and anything else he can so this has resulted in lots of wet diapers and lots of leaks!
My Dad lost one of his dear friends this week. My prayers go out to Ray's wife and his kids. Dad cared a lot about him and I'm sure this was really hard for him.
And then when I think I am failing as a Mother my precious 3 year old (soon to be 4!) shows me this wonderful side of him and teaches me a few things. He is a doll that Jonathan. He is a very kind boy and loves everyone. He loves to talk to strangers and is very polite. At home, he is a bit more, um what is the word, rowdy?! LOL
Since mom passed away I have made sure I talk to him about her, show him the photobook I made and tell him how much I miss her. He takes it all in and he knows who she is and that she is in heaven with Buster and God. He knows that Grandma Keeven and God are both in his heart and with him all the time. Sometimes what he knows and shares with me makes me slow down and take time to smell the roses. A few days ago I got up to take my shower, both boys were awake too so I put them in front of the tv and prayed I could squeeze in a quick shower before Blue's Clue's was over. I kept hearing noise and tried to hurry up. As I came out I asked Jonathan if he and Zachary were ok and his reply was "yes" and then he said, "Mom your Mom was here!". Wow, that's crazy. I said, "what" and he said "Your mom was here." and after asking what about 3 more times and where she was he told me "Yes, your mom was here. You know Grandma Keeven that is in heaven? She was right there by the door!".
My first thought was that someone had tried to break in but then I knew that he had seen her. Some form of her. I think Mom popped in for to check on the boys for me. Call me crazy but I think the boys see her a lot. Jonathan talks about her a lot and I love it. Sometimes I cry and sometimes I just sit and listen and smile. I love talking about my Mom and I especially love talking to Jonathan about her. Sure there are tears but its all good. He also informed me that he wanted to have his birthday party at Grandpa Keeven's house because that is where we had mine. Hey, as long as Grandpa doesn't care it's a LOT cheaper for me!
Z-man is doing great! In the past week he has changed so much. I swear he is the happies baby on Earth, even though Jonathan says we all get the grumpies and Zachary gets them a lot! He charms every person he meets. He is a special little person and I am so glad I was chosen to be his Mom. He adores JD. His appetite has increased and maybe even doubled! He loves the bottle and will now drink 7 - 10oz sometimes! This will be after he eats dinner. He is on all table foods and can chow with the big boys. He eats anything and chews really well! He is cutting 2 teeth on the top. He had a fever tonight, very low, and was a bit fussy but Daddy got him to sleep. I can't believe that in 5 weeks that little Boo will be 1 year old!
We went to see the Urologist for his follow up appt and he said he heeled up very nicely and has good skin! Despite the wee bit of diaper rash he had going on. He drinks from the sippy cup and bottle and anything else he can so this has resulted in lots of wet diapers and lots of leaks!
My Dad lost one of his dear friends this week. My prayers go out to Ray's wife and his kids. Dad cared a lot about him and I'm sure this was really hard for him.
Sunday, September 7, 2008
Our Last Supper
No, not the one from the bible, the one with my Mom.
Last year on this date I was enjoying the last supper with my mom. It was me and Jason, my sister, brother in law and niece and my mom and dad. Mom was so tired. I had to help her take her insulin because she couldn't see. She looked thinner and was even nodding off at the table. She had no appetite and barely ate. I remember she ordered a pricey shrimp meal.
We sat in the restaurant, talking and laughing like everything was fine and well, it was. Could we have done something different? Maybe but it wouldn't have made a difference. While I miss Mom so much that it hurts, I know she was tired and ready to home and be with her loved ones that went on before her. She had a long journey and needed to rest. I know she is up there with her parents and her sister and so many others. They are catching up and enjoying the peace up in Heaven.
Today we had the Keeven family reunion and this was a day that mom looked forward to. She enjoyed it so much. Last year we all went and moms death was so fresh and it was so hard to be there, yet so comforting. Mom had always planned it all for us and took care of us. Well we forgot table cloths last year. This year I made sure I brought one. Mom would have had 2 or 3 vinyl ones, I only had 1 disposable one. She made sure we all had plates, utensils and napkins. It seemed to always either rain or be very hot for our reunion. This year it rained that morning and then was a gorgeous day that we all enjoyed. I think Mom made sure it was a nice day.
It was one year ago today that I last saw my mom alive. I hugged and kissed her goodbye and told her I loved her. I guess that isn't a bad way to end things. I wonder if I had known it would be the last time I'd see her if I would have said anything else?
Thank you. I would have said "thank you Mom for being the wonderful Mom that you were.".
Last year on this date I was enjoying the last supper with my mom. It was me and Jason, my sister, brother in law and niece and my mom and dad. Mom was so tired. I had to help her take her insulin because she couldn't see. She looked thinner and was even nodding off at the table. She had no appetite and barely ate. I remember she ordered a pricey shrimp meal.
We sat in the restaurant, talking and laughing like everything was fine and well, it was. Could we have done something different? Maybe but it wouldn't have made a difference. While I miss Mom so much that it hurts, I know she was tired and ready to home and be with her loved ones that went on before her. She had a long journey and needed to rest. I know she is up there with her parents and her sister and so many others. They are catching up and enjoying the peace up in Heaven.
Today we had the Keeven family reunion and this was a day that mom looked forward to. She enjoyed it so much. Last year we all went and moms death was so fresh and it was so hard to be there, yet so comforting. Mom had always planned it all for us and took care of us. Well we forgot table cloths last year. This year I made sure I brought one. Mom would have had 2 or 3 vinyl ones, I only had 1 disposable one. She made sure we all had plates, utensils and napkins. It seemed to always either rain or be very hot for our reunion. This year it rained that morning and then was a gorgeous day that we all enjoyed. I think Mom made sure it was a nice day.
It was one year ago today that I last saw my mom alive. I hugged and kissed her goodbye and told her I loved her. I guess that isn't a bad way to end things. I wonder if I had known it would be the last time I'd see her if I would have said anything else?
Thank you. I would have said "thank you Mom for being the wonderful Mom that you were.".
Thursday, August 28, 2008
9 Month Appointment/Preschool
Today we had Jonathan's preschool open house. Chelsea and I took him up there and at first he didn't want me to leave his sight but then he began playing more. I think he was a bit intimidated by some of the kids b/c he didn't know them. It's funny because he was a good 2 - 3 inches taller than nearly all of them! The teachers were wonderful and it looked like so much fun. So many different activities. I wish I could go. We told him that next week he will go and stay for a bit but the mommies couldn't stay. I think he'll be okay.
We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.
Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.
I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.
His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.
Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.
My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.
Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.
She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.
We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.
Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.
I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.
His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.
Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.
My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.
Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.
She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.
Friday, August 1, 2008
August
In St. Louis, August means HOT! Temps in the 100's, air so thick it sucks the life out of you and the constant sound of the air conditioner running.
In my heart, it means Mom and Dad's anniversary. August 3rd. Last year it was such a busy happy time for all of us as we prepared to celebrate their 50 years of marriage. We watched Mom dance with Dad for the first time in many years. This year, we will go to Dad's in the 100 degree weather and barbecue. Are we doing it for Dad, or for us? I don't know.
The past week has been a rough one. Jason's Aunt Nancy passed away and she was a great woman and she was loved by many. Even if I hadn't known her, I would have known how incredible she was just by looking at the pictures. Actually, his entire family is pretty great. No, I'm not saying that because some of them read my blog, ha ha. I am saying that because they all welcomed me into their family without any questions. They were all so kind and treated me as one of them.
His Uncle Denny (Nancy's husband) passed away in December. I can't imagine the pain their kids and grandkids have felt and all they have gone through...losing both parents within 8 months. It is not fair. As I watched the slide show I saw their wedding pictures and I imagined the 2 of them in heaven shining down on their family and letting them know it's okay, they are together again.
I also noticed how strong and dominant those Foster genes are! I could see Jason and even Zachary in the pictures of Uncle Denny.
This was the first funeral I attended since Mom's and I tried so hard to be strong but in the end, I used the boys as my excuse and we sat in the "cry room" at the funeral home. It was nice because I could hear the service and both boys fell asleep. And well, I avoided a potential breakdown that I didn't want to happen because it just wasn't the place for it. Now that I am back in St. Louis, I had my breakdown. Jonathan told me it was okay, Grandma would be here soon. It's funny because I will think I'm doing okay and then I stumble across something, an item, memory, song, tv show and the pain comes flying back at me.
Jonathan has a "special box" where I keep cards and stuff that he has gotten from family and friends. We opened it to look at it and I found the card Mom gave me at his shower. She also gave me to sets of baby booties. In the card it said how she found these booties and that Grandma Keeven made them and since I was the youngest grandchild she would want me to have them. She then wrote, "I know Grandma is looking down on us.". Yes and now the 2 of them are looking down on us. Too bad it hurt so much.
I promised I'd post more frequently but I forgot so now you get a long post about my sappy feelings and then the last part about the boys. The boys were total and complete angels for the trip up to Iowa and back. I never knew how good Jonathan could be. I was so proud. He can be a very polite and loving child. He was happy to see his great grandma and great papa. "They have blocks, stairs and puzzles!" I know it did Grandma (and everyone there) well to see Zachary and see how well he is doing. I just didn't realize that if you don't see him everyday, you could really think the worst of his situation. I am glad we went up there just sorry it was for a funeral. I wish we had made it up there sooner. We are heading back up this Friday to meet my friend Alana and her family. We are going camping! She is one of my online mommy friends and I am so excited to meet her.
Zachary truly is doing well. I still read up on JMML and NF1 because while I try not to obsess on it and as much as I want to believe the worst is behind us, I never will. I know that kids with bone marrow transplants can still have JMML come back. They say it never really goes away. No i don't know if had it but that doesn't ease my mind. However, my sweet happy baby is just that...sweet and ever so happy. His smile lights up a room. He is tiny and precious. I had the parents as teacher lady come out to evaluate him and she feels he is right on target. He is a wee bit behind on sitting up but she said to give it another month or 2 and then we may need to get some physical therapy.
She was going to refer him to a statewide program but our oh so wonderful (sacrasm) Governor, Matt Blunt, decided that he didn't feel the MO First Steps or Early Intervention Program was very important so he cut the program. What a swell guy! Glad I voted for him! So because of him, kids won't even qualify for an evaluation until they are 4 months behind on a milestone. I mean really, what an idiot. I just don't see how such a wonderful program can be treated so poorly. Thank goodness he felt he did everything he set out to do so there is no need for him to run for office again. Are you kidding me? What an ego!
In my heart, it means Mom and Dad's anniversary. August 3rd. Last year it was such a busy happy time for all of us as we prepared to celebrate their 50 years of marriage. We watched Mom dance with Dad for the first time in many years. This year, we will go to Dad's in the 100 degree weather and barbecue. Are we doing it for Dad, or for us? I don't know.
The past week has been a rough one. Jason's Aunt Nancy passed away and she was a great woman and she was loved by many. Even if I hadn't known her, I would have known how incredible she was just by looking at the pictures. Actually, his entire family is pretty great. No, I'm not saying that because some of them read my blog, ha ha. I am saying that because they all welcomed me into their family without any questions. They were all so kind and treated me as one of them.
His Uncle Denny (Nancy's husband) passed away in December. I can't imagine the pain their kids and grandkids have felt and all they have gone through...losing both parents within 8 months. It is not fair. As I watched the slide show I saw their wedding pictures and I imagined the 2 of them in heaven shining down on their family and letting them know it's okay, they are together again.
I also noticed how strong and dominant those Foster genes are! I could see Jason and even Zachary in the pictures of Uncle Denny.
This was the first funeral I attended since Mom's and I tried so hard to be strong but in the end, I used the boys as my excuse and we sat in the "cry room" at the funeral home. It was nice because I could hear the service and both boys fell asleep. And well, I avoided a potential breakdown that I didn't want to happen because it just wasn't the place for it. Now that I am back in St. Louis, I had my breakdown. Jonathan told me it was okay, Grandma would be here soon. It's funny because I will think I'm doing okay and then I stumble across something, an item, memory, song, tv show and the pain comes flying back at me.
Jonathan has a "special box" where I keep cards and stuff that he has gotten from family and friends. We opened it to look at it and I found the card Mom gave me at his shower. She also gave me to sets of baby booties. In the card it said how she found these booties and that Grandma Keeven made them and since I was the youngest grandchild she would want me to have them. She then wrote, "I know Grandma is looking down on us.". Yes and now the 2 of them are looking down on us. Too bad it hurt so much.
I promised I'd post more frequently but I forgot so now you get a long post about my sappy feelings and then the last part about the boys. The boys were total and complete angels for the trip up to Iowa and back. I never knew how good Jonathan could be. I was so proud. He can be a very polite and loving child. He was happy to see his great grandma and great papa. "They have blocks, stairs and puzzles!" I know it did Grandma (and everyone there) well to see Zachary and see how well he is doing. I just didn't realize that if you don't see him everyday, you could really think the worst of his situation. I am glad we went up there just sorry it was for a funeral. I wish we had made it up there sooner. We are heading back up this Friday to meet my friend Alana and her family. We are going camping! She is one of my online mommy friends and I am so excited to meet her.
Zachary truly is doing well. I still read up on JMML and NF1 because while I try not to obsess on it and as much as I want to believe the worst is behind us, I never will. I know that kids with bone marrow transplants can still have JMML come back. They say it never really goes away. No i don't know if had it but that doesn't ease my mind. However, my sweet happy baby is just that...sweet and ever so happy. His smile lights up a room. He is tiny and precious. I had the parents as teacher lady come out to evaluate him and she feels he is right on target. He is a wee bit behind on sitting up but she said to give it another month or 2 and then we may need to get some physical therapy.
She was going to refer him to a statewide program but our oh so wonderful (sacrasm) Governor, Matt Blunt, decided that he didn't feel the MO First Steps or Early Intervention Program was very important so he cut the program. What a swell guy! Glad I voted for him! So because of him, kids won't even qualify for an evaluation until they are 4 months behind on a milestone. I mean really, what an idiot. I just don't see how such a wonderful program can be treated so poorly. Thank goodness he felt he did everything he set out to do so there is no need for him to run for office again. Are you kidding me? What an ego!
Wednesday, June 11, 2008
Worry, Worry, Worry
Well over the weekend and on Monday I started to get a bit worried about Z. He was vomitting, not eating much and his soft spot was sunken in. So on Tuesday I made my way to Dr. Kate's office. As we were waiting Z had one of his reflux coughing fits and 3 of the nurses came out to see him. "We have Baby Radar" and Z just lit up and flirted with all of them. Everyone commented on him and of course the staff "knows" about him. They are all so wonderful there.
Zachary is up to 15lbs and 1 oz! His soft spot was a concern but she said that since he was drooling so much, he was not dehydrated to the point we needed to treat it. If the drooling stopped, appetite decreased or he tossed his cookies, well formula, any more then we are suppose to give him Pedialyte. She assured me his cough was his reflux cough. I really did know that but these days all I do is second guess myself.
He goes for his VCU catheter test thing on Monday. Boy this should be fun. I am already queasy thinking about it. Really he is doing so well and if I could stop worrying, I'd see that. He adores Jonathan. When i put them to bed I often find Jonathan in Z's crib and they are playing. It is the cutest thing.
We are trying to find preschool for Jonathan. i don't think the school district program will work b/c of the hours. I will find something in time. I just want him to go somewhere a few hours where he doesn't know anyone so he can adjust to that for when kindergarten comes along.
As for me, I'm beginning to realize that I haven't taken time to take care of myself and my feelings. I don't think I've ever truly grieved for my Mom. I mean when she died I was very pregnant, had Z, Z got sick and my life was consumed on carrying for him and worrying about him. I'm angry and sad a lot more these days. I hate that my mom is gone and Z will never meet her. Jonathan talks about her quite a bit and will ask if we can go to heaven to get her. I pray to have dreams where I talk to her. I don't want to be angry and sad so I have to take some time for me and allow myself to cry and feel all the emotions that I feel. I can't take care of everyone and everything else and ignore myself. That's my new goal, each day do one thing for me and not feel guilty! Don't we all deserve that?
Zachary is up to 15lbs and 1 oz! His soft spot was a concern but she said that since he was drooling so much, he was not dehydrated to the point we needed to treat it. If the drooling stopped, appetite decreased or he tossed his cookies, well formula, any more then we are suppose to give him Pedialyte. She assured me his cough was his reflux cough. I really did know that but these days all I do is second guess myself.
He goes for his VCU catheter test thing on Monday. Boy this should be fun. I am already queasy thinking about it. Really he is doing so well and if I could stop worrying, I'd see that. He adores Jonathan. When i put them to bed I often find Jonathan in Z's crib and they are playing. It is the cutest thing.
We are trying to find preschool for Jonathan. i don't think the school district program will work b/c of the hours. I will find something in time. I just want him to go somewhere a few hours where he doesn't know anyone so he can adjust to that for when kindergarten comes along.
As for me, I'm beginning to realize that I haven't taken time to take care of myself and my feelings. I don't think I've ever truly grieved for my Mom. I mean when she died I was very pregnant, had Z, Z got sick and my life was consumed on carrying for him and worrying about him. I'm angry and sad a lot more these days. I hate that my mom is gone and Z will never meet her. Jonathan talks about her quite a bit and will ask if we can go to heaven to get her. I pray to have dreams where I talk to her. I don't want to be angry and sad so I have to take some time for me and allow myself to cry and feel all the emotions that I feel. I can't take care of everyone and everything else and ignore myself. That's my new goal, each day do one thing for me and not feel guilty! Don't we all deserve that?
Monday, March 10, 2008
March 9th
March 9th is a day of many birthdays. My BIL John and my nephew Josh. (Happy Birthday!) It is also the birthday of a very speical boy, Thomas. He would have been 3 YO this year. Unfortunately, Thomas is not here to celebrate his brithday with his Mommy and Daddy.
Thomas taught me so much in his brief little life. His Mom and Dad are 2 very wonderful, funny, smart and caring people. I will be thinking of you all this week and Jonathan and I are sending prayers to Thomas.
In my mind, I picture Thomas and his little buddy Ryan digging into some birthday cake and playing with some balloons. I also imagine my Mom and my dog Buster stopping by to wish Thomas a happy birthday. Call me crazy, but I can see that very clearly in my mind.
My mom's birthday is on the 19th, the first one without her here. My SIL Kim suggested we start a tradition and bring food to a battered Women's and Children's shelter. I love this idea. She also suggested a cake and some crayons and stuff. The kids will love that. I decided that I will not only do this for my Mom but I will also do it in memory of sweet Thomas. I know his Mom would love that! And I love the idea of sharing this tradition for Mom with Thomas.
I think I will donate some books and/or diapers and formula for Thomas and then the other stuff for Mom. What a great way to honor those not with us and to help those less fortunate. I think Mom and Thomas would like that!
Kristin and Sandy...our thoughts and prayers are with you both (and Thomas) everyday, but especially this week. Many hugs to you both!
Thomas taught me so much in his brief little life. His Mom and Dad are 2 very wonderful, funny, smart and caring people. I will be thinking of you all this week and Jonathan and I are sending prayers to Thomas.
In my mind, I picture Thomas and his little buddy Ryan digging into some birthday cake and playing with some balloons. I also imagine my Mom and my dog Buster stopping by to wish Thomas a happy birthday. Call me crazy, but I can see that very clearly in my mind.
My mom's birthday is on the 19th, the first one without her here. My SIL Kim suggested we start a tradition and bring food to a battered Women's and Children's shelter. I love this idea. She also suggested a cake and some crayons and stuff. The kids will love that. I decided that I will not only do this for my Mom but I will also do it in memory of sweet Thomas. I know his Mom would love that! And I love the idea of sharing this tradition for Mom with Thomas.
I think I will donate some books and/or diapers and formula for Thomas and then the other stuff for Mom. What a great way to honor those not with us and to help those less fortunate. I think Mom and Thomas would like that!
Kristin and Sandy...our thoughts and prayers are with you both (and Thomas) everyday, but especially this week. Many hugs to you both!
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