I have cried at least four times today...ugh...it's been one of those days. I don't like to complain, but I sure could use some encouragment.
It started with an e-mail from one of the kids' teachers about the "story telling" that one of my children is doing lately in class (and at home for that matter). This is my child...that until a month ago...was Abe Lincoln honest. This is the second MAJOR offense in 2 days. After reading the e-mail, I sat in the booth at Burgerville (Mark had taken me and Bells to lunch) crying my eyes out. The tears just came. I couldn't hold them back, and HONESTLY I really didn't care who saw me cry. I felt like I could take on anyone at that point. Bring it...let's see them do any better.
My child, disrupted 20 minutes of class today with their "whopper" of a story (aka...lie). I felt ashamed. I have rasied them better than that. We talk about honesty and truth. It hasn't sunk in. Mark and I handled the situation with firmness. There was repentence. I pray that the lesson will help them next time they would feel compelled to "tell stories." There is no manual on how to raise kids. Special needs kids. Adopted kids. I NEED one. Especially today.
Mark and I had some money set away to try and get away around my birthday. We had a destination in mind, but alas, we can't go because it is too far. This event today reminded us that if we are able to get away we have to stay within an hour of home. We would have to deal with these types of situations or medical issues that would arise. I cried...again.
I finally had the opportunity to take Grace to ballet today. Just her and me. I was so looking forward to just watching her. On the way to ballet, she refused to talk to me. I asked why. No response. Finally she squeaks out "I hate ballet...I am just too tired...I don't want to go. I want to play soccer." I told her that she was going to finish the ballet season. That we had already spent 250 dollars on Show case fees, costumes and pictures. Sometimes we have to do things we don't want. I dropped her off in class had to explain to her teacher her attitude and cried...again.
I came home and got a call from someone who needed to complain about the information I researched and gave them on a dental school. Apparently it wasn't a "good deal". Whoops...sorry. Fail.
Serving dinner, I spilled the chili all over the floor and then as I was cleaning it up, I stood up and smashed my cheek into the side of the cabinet. I have a shiner now. Fabulous! I cried...hard.
Oh and the baby didn't nap today. So I am waving my white flag. I admit defeat.
Wednesday, March 21, 2012
Saturday, March 17, 2012
Honoring Our 3 March Munchkins
This a video scrapbook of their last year. I played this at their birthday party. I hope you enjoy!
Sunday, March 11, 2012
5 Things About Being a Special Needs Mom
Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability. That's about 10 million children in the US.
Luke is one of those kids.
He has several disorders. Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs. After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.
His disorders (or special needs) have caused medical and developmental problems. He has been in physical, occupational and social therapies. He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies. He has been through more doctor specialists than I can count or remember.
Raising a special needs child, is a blessing and a challenge. It is rewarding and trying. It is inspiring and defeating. It is like you can't have one without the other. You take the good and the not so good. I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that. Many people will tell me what an excellent job I do with Luke, and how blessed he is to have parents "like us" but I often feel I am just so blessed to have him in my life. I don't feel like I am anything special, and most days I feel that I am just "not good enough". I yelled when I shouldn't have or didn't do enough activities with him. I fail on so many levels, but I am human. I am a mom. A special needs mom. Mainly though I just like to be known as...Luke's mom...(and Grace's and Bella's). As a mom of children with special needs, I often feel a myriad of emotions. I took this idea from another blog and wanted to share MY "real" honest thoughts about how I feel as a special needs mom. Maybe you can gain some insight into how it is to be a special needs mom. :)
1. I am tired...just being a mom is exhausting. Especially to little ones. However, parenting a special needs child takes things to another level of being tired. On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies. While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week. We may visit doctors and specialists several times a month. In February Luke visited the orthodontist 5 times. In March so far he has been to OHSU for his eyes. He will also go visit his primary care doctor this month too. If its not the medical it is the educational. I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP. There is a whole week in October I will never be getting back. There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs. The emotional toll causes one to be tired. I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying.
2. I am jealous...I almost didn't put this one down. I thought about it a lot and sadly it is SO true. I would never want to admit this to anyone or let anyone see this side of me. But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows. I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I. I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities. I feel jealous Luke can't attend a private Christian School because they cannot meet his needs. I feel jealous when other mom's can go away for the weekend without children. (I know this sounds a little selfish, but I am not perfect and just being REAL.) Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?). It wasn't because I was upset or mad. I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous. I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with. I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three. Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself. My stomach was in knots. Luke can throw some rippin tantrums, and has a difficult time with change in routine. He can melt down easily when he is feeling anxious. How did it get this way? The last time Mark and I went away for 1 night, just the 2 of us was November 2009. We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that. I am jealous of those that can and do. Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).
3. I feel alone... I went to a MOMS group at the beginning of this year. It was a sweet group of ladies, very welcoming, but I only went once. When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists. They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?" I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for. Which leads me to this point of "I feel alone." Most days I spend completely alone (with my kids). Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist. I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.
4. I am human...I am not a saint, even though well meaning people do try and tell me I am. I have bad days, off days, days I feel like I am failing and think I am not doing a good job. Being Luke's mom has really re-shaped my life in many, many good ways. He has helped me discover who I really am. I have realized that I am a lot stronger than what I thought. I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot. I still have dreams of my own...things I would like to accomplish. A few dreams that have lingered since before I became Luke's mom. Memories of the past. I still love to get my nails done, shop and visit Starbucks. Music helps...I love my iPod.
5. I am scared...This one is difficult to admit too. While I don't dwell on this thought too much, it is part of raising a child with special needs. I am scared that I won't do something or find the right therapy for him. I am scared he is going to be blind someday. I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks? I am scared I am not doing enough or that I am doing too much? I am scared when he goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules. I am scared that time is going by too quickly...moments are passing I won't ever get back. Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?
My life is forever changed (for the better) by raising Luke. He blesses me in ways that I can't explain. When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine. Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy. I don't take that lightly. I was called to this "position"...to take up my weapon and fight for those who cannot. I know that the mere existence of Luke is a promise that God has a BIG plan for his life. I really believe it. So even though it may not look so pretty in the trenches, I am fighting. I am real. I am HIS mom.
Luke is one of those kids.
He has several disorders. Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs. After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.
His disorders (or special needs) have caused medical and developmental problems. He has been in physical, occupational and social therapies. He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies. He has been through more doctor specialists than I can count or remember.
Raising a special needs child, is a blessing and a challenge. It is rewarding and trying. It is inspiring and defeating. It is like you can't have one without the other. You take the good and the not so good. I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that. Many people will tell me what an excellent job I do with Luke, and how blessed he is to have parents "like us" but I often feel I am just so blessed to have him in my life. I don't feel like I am anything special, and most days I feel that I am just "not good enough". I yelled when I shouldn't have or didn't do enough activities with him. I fail on so many levels, but I am human. I am a mom. A special needs mom. Mainly though I just like to be known as...Luke's mom...(and Grace's and Bella's). As a mom of children with special needs, I often feel a myriad of emotions. I took this idea from another blog and wanted to share MY "real" honest thoughts about how I feel as a special needs mom. Maybe you can gain some insight into how it is to be a special needs mom. :)
1. I am tired...just being a mom is exhausting. Especially to little ones. However, parenting a special needs child takes things to another level of being tired. On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies. While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week. We may visit doctors and specialists several times a month. In February Luke visited the orthodontist 5 times. In March so far he has been to OHSU for his eyes. He will also go visit his primary care doctor this month too. If its not the medical it is the educational. I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP. There is a whole week in October I will never be getting back. There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs. The emotional toll causes one to be tired. I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying.
2. I am jealous...I almost didn't put this one down. I thought about it a lot and sadly it is SO true. I would never want to admit this to anyone or let anyone see this side of me. But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows. I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I. I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities. I feel jealous Luke can't attend a private Christian School because they cannot meet his needs. I feel jealous when other mom's can go away for the weekend without children. (I know this sounds a little selfish, but I am not perfect and just being REAL.) Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?). It wasn't because I was upset or mad. I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous. I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with. I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three. Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself. My stomach was in knots. Luke can throw some rippin tantrums, and has a difficult time with change in routine. He can melt down easily when he is feeling anxious. How did it get this way? The last time Mark and I went away for 1 night, just the 2 of us was November 2009. We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that. I am jealous of those that can and do. Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).
3. I feel alone... I went to a MOMS group at the beginning of this year. It was a sweet group of ladies, very welcoming, but I only went once. When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists. They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?" I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for. Which leads me to this point of "I feel alone." Most days I spend completely alone (with my kids). Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist. I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.
4. I am human...I am not a saint, even though well meaning people do try and tell me I am. I have bad days, off days, days I feel like I am failing and think I am not doing a good job. Being Luke's mom has really re-shaped my life in many, many good ways. He has helped me discover who I really am. I have realized that I am a lot stronger than what I thought. I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot. I still have dreams of my own...things I would like to accomplish. A few dreams that have lingered since before I became Luke's mom. Memories of the past. I still love to get my nails done, shop and visit Starbucks. Music helps...I love my iPod.
5. I am scared...This one is difficult to admit too. While I don't dwell on this thought too much, it is part of raising a child with special needs. I am scared that I won't do something or find the right therapy for him. I am scared he is going to be blind someday. I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks? I am scared I am not doing enough or that I am doing too much? I am scared when he goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules. I am scared that time is going by too quickly...moments are passing I won't ever get back. Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?
My life is forever changed (for the better) by raising Luke. He blesses me in ways that I can't explain. When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine. Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy. I don't take that lightly. I was called to this "position"...to take up my weapon and fight for those who cannot. I know that the mere existence of Luke is a promise that God has a BIG plan for his life. I really believe it. So even though it may not look so pretty in the trenches, I am fighting. I am real. I am HIS mom.
Saturday, March 10, 2012
Big Birthday Bash!!!
This past weekend we had our big birthday bash! I offered to let the kids have their "own" birthday party this year, but they insisted that they have their birthdays "together". They each picked a theme...Grace...Tangled and Luke...Batman. Wow!!! Finding everything and marrying their themes together was a lot more difficult than I thought. But I was really happy with their party (and so were they). I spent 6 weeks planning every detail of the party and it was really fun! I think I would enjoy planning parties for a job.
Every time Luke or Grace's birthdays come, I remember a time when I thought I wouldn't have any children to celebrate birthdays with. I am so thankful and blessed that God gave me my wonderful, beautiful children that I can plan birthday parties for! So....are you ready for some pictures!!!! Thank you to my mom who snapped most of these pictures while I organized and instructed.
This is the door that greeted our "guests". It was Rapunzel's hair and Batman symbols that welcomed.
I created a take-home treat bucket for each of the kiddos that helped celebrate and one for each of the birthday kids too. I ordered vinyl for each name and the batman symbol. I decorated water bottles with the batman theme. I found batman themed color books at Target, batman pez at the dollar store, and other batman items including bracelets, band-aids and crayons.
These were the girls take-home treat buckets. Tangled themed of course. I decorated water bottles in the tangled theme. They had Rapunzel paints, princess pez, pencils, princess band-aids and other fun stuff!
I was able to borrow tables and chairs from our church, which worked out perfectly. One table was Batman and the other Tangled (of course).
This was Grace's Tangled Cake. I ordered them this year and it was a nice break from making them.
Here was Luke's Batman cake. This was a very difficult cake to find as they don't have very many Batman party supplies anymore.
This was the yummy food table. The Jello boats were a BIG hit!
I made these little peg people in the characters of Rapunzel and Batman. They were guarding the skittles!
These Hersey Kisses labels were a fun find! They had them in all the superheros. They said "Happy 9th Birthday Luke!"
These were the Tangled themed ones that I ordered for Grace. They said "Happy 7th Birthday Grace". Too cute!
Mr. L...our big 9 year old!
Miss G...as Rapunzel. Our big 7 year old! The kids helped me braid Rapunzel's hair. Grace then helped me make the purple flower hair clips. I did draw the tower with Rapunzel.
Of course we needed a picture with Miss B. She had cute little piggy tails in for the party!
Luke thinking about his wish before he blows the candles out.
The kids were making crafts out in the garage. Girls were making tiaras and the boys were painting batman pictures.
Kids playing pin the symbol on Batman and pin the frying pan on Flynn Rider.
We also got a pull string pinata for the kids.
Opening presents.....
The big hit of the party for Grace...The Rapunzel wedding gown from the Disney Store. Thank you Uncle D and Aunt Katie.
Grace waiting to blow out her candles!
I have since recovered from the party festivities. We are planning a small party for Bella at the end of the month. She isn't into lots of people, so small is the best plan for her. :)
Every time Luke or Grace's birthdays come, I remember a time when I thought I wouldn't have any children to celebrate birthdays with. I am so thankful and blessed that God gave me my wonderful, beautiful children that I can plan birthday parties for! So....are you ready for some pictures!!!! Thank you to my mom who snapped most of these pictures while I organized and instructed.
This is the door that greeted our "guests". It was Rapunzel's hair and Batman symbols that welcomed.
I created a take-home treat bucket for each of the kiddos that helped celebrate and one for each of the birthday kids too. I ordered vinyl for each name and the batman symbol. I decorated water bottles with the batman theme. I found batman themed color books at Target, batman pez at the dollar store, and other batman items including bracelets, band-aids and crayons.
These were the girls take-home treat buckets. Tangled themed of course. I decorated water bottles in the tangled theme. They had Rapunzel paints, princess pez, pencils, princess band-aids and other fun stuff!
I was able to borrow tables and chairs from our church, which worked out perfectly. One table was Batman and the other Tangled (of course).
This was Grace's Tangled Cake. I ordered them this year and it was a nice break from making them.
Here was Luke's Batman cake. This was a very difficult cake to find as they don't have very many Batman party supplies anymore.
This was the yummy food table. The Jello boats were a BIG hit!
I made these little peg people in the characters of Rapunzel and Batman. They were guarding the skittles!
These Hersey Kisses labels were a fun find! They had them in all the superheros. They said "Happy 9th Birthday Luke!"
These were the Tangled themed ones that I ordered for Grace. They said "Happy 7th Birthday Grace". Too cute!
Mr. L...our big 9 year old!
Miss G...as Rapunzel. Our big 7 year old! The kids helped me braid Rapunzel's hair. Grace then helped me make the purple flower hair clips. I did draw the tower with Rapunzel.
Of course we needed a picture with Miss B. She had cute little piggy tails in for the party!
Luke thinking about his wish before he blows the candles out.
The kids were making crafts out in the garage. Girls were making tiaras and the boys were painting batman pictures.
Kids playing pin the symbol on Batman and pin the frying pan on Flynn Rider.
We also got a pull string pinata for the kids.
Opening presents.....
The big hit of the party for Grace...The Rapunzel wedding gown from the Disney Store. Thank you Uncle D and Aunt Katie.
Grace waiting to blow out her candles!
I have since recovered from the party festivities. We are planning a small party for Bella at the end of the month. She isn't into lots of people, so small is the best plan for her. :)
Thursday, March 1, 2012
Maui Vacation Photos
I created this photo video for my Mom and Roger's Anniversary. It goes through both trips with some of my favorite music.
Monday, February 27, 2012
Tuesday, February 14, 2012
A Father's Love
The newest relationship between daddy and child is taking place with Isabella.
It began in a cold operating room nearly 2 years ago.
One of her very favorite things to do is go "weee". Which is not going potty :) "Weee" is her word for "swing".
She often will stand at the sliding glass door and plead with daddy to take her to swing. "Pease, pease dada weeee." He can't say "no."
She squeals in delight as she swings.
Fully trusting her daddy to protect her and keep her safe while investing in the things that delight her heart!
I am reminded that is the type of relationship that we should have with our heavenly Father. One that in any circumstance TRUSTS. Has blind FAITH that God has a plan for our lives. Knows without doubting that our FATHER loves us unconditionally and is there for us. Belief that in all things He works them together for good. Even the horrible, difficult, painful times of life. HIS purpose is GREATER. Our FATHER is GOOD! This Valentine's Day I am reminded of the ultimate LOVE that was shown through the death of God's Son Jesus, so that we may have relationship with Him. This all communicated to me through the simple act of swinging. :)
"How great is the LOVE the Father has lavished on us, that we should be called children of God! And that is what we are!" I John 3:1
Saturday, January 28, 2012
Nature Vs. Nurture
I remember during my early college days, there were many cases and examples of "nature vs. nurture" in my human development classes. Never in my wildest imagination would I have predicted that I would live out a case study of "nature vs. nurture."
You see...this past Thursday Luke had an appointment....a BIG appointment at Legacy Emmanuel Children's Hospital "pediatric genetics." To Luke this was just ANOTHER appointment in a hospital he is all to familiar with. His biggest worry was "mom...am I going to have to get my heart surgery today?" Poor baby is worried they are going to operate on him. Right hospital...wrong office. But to his credit, pediatric cardiology is only 2 doors away.
After checking in we waited to be called back. The nurse came out and called Luke. Mark and I followed him back to the room where they weighed, measured and took vitals on him. Then into "exam room 5" we went. I sat down and it ALL came flooding back. 7 years ago almost to the day, I sat in the same chair, with an almost 2 year old "Eugene" and his birth parents. We sat for nearly an hour as they recounted their entire genetic history and I wished I had a notebook to write everything down. You see the Department of Children and Family Services wanted this appointment conducted before we moved forward with the adoption. It was an eye opening experience to be flooded with information about your child's history. That day I met Dr. Anidiotis, and this past Thursday we met again...only under different circumstances.
It had been recommended to me by 2 doctors to go and see our geneticist again. They wanted to know if they could find a link between all of Luke's health issues. More specifically, was there a genetic link between microcephaly and glaucoma.
So we sat and I recounted to Dr. Anidiotis Luke's recent health history, his diagnosis' and IEP goals and plans. After a thorough examination of Luke, the doctor looked at me square in the eye and said, "I CAN'T believe how WELL he is doing! To be honest, seeing the parents and seeing the genetic make-up, I never thought Luke would be doing as well as he is doing." He went on to tell us that Luke is the very heart of NATURE VS. NURTURE. The doctor said that given the "nature" of his genetic make-up it is a MIRACLE that Luke is doing "grade level" work and reading at grade level. The doctor said that he just can't believe he is functioning so well.
Of course, as I have worked with so many different doctors over the years, they always give you the good with the bad. They are always quick to remind you of the negative and the things that bring you right back down to earth. The doctor was quick to say that Luke's next year in school would determine how well he will do in understanding "abstract" concepts. Apparently in the fourth grade learning concepts switch from concrete to more abstract, and the key to Luke being able to live on his own will be how he can handle the abstract concept of money. Great...the last thing I want to think about right now is Luke living on his own, money, and abstract concepts. Whatever... Luke has proved his predictions wrong so far...I think I will just side with Luke and his ability to achieve the impossible.
You see...this past Thursday Luke had an appointment....a BIG appointment at Legacy Emmanuel Children's Hospital "pediatric genetics." To Luke this was just ANOTHER appointment in a hospital he is all to familiar with. His biggest worry was "mom...am I going to have to get my heart surgery today?" Poor baby is worried they are going to operate on him. Right hospital...wrong office. But to his credit, pediatric cardiology is only 2 doors away.
After checking in we waited to be called back. The nurse came out and called Luke. Mark and I followed him back to the room where they weighed, measured and took vitals on him. Then into "exam room 5" we went. I sat down and it ALL came flooding back. 7 years ago almost to the day, I sat in the same chair, with an almost 2 year old "Eugene" and his birth parents. We sat for nearly an hour as they recounted their entire genetic history and I wished I had a notebook to write everything down. You see the Department of Children and Family Services wanted this appointment conducted before we moved forward with the adoption. It was an eye opening experience to be flooded with information about your child's history. That day I met Dr. Anidiotis, and this past Thursday we met again...only under different circumstances.
It had been recommended to me by 2 doctors to go and see our geneticist again. They wanted to know if they could find a link between all of Luke's health issues. More specifically, was there a genetic link between microcephaly and glaucoma.
Luke with his bio sisters (Alysha and Jenna)
Of course, as I have worked with so many different doctors over the years, they always give you the good with the bad. They are always quick to remind you of the negative and the things that bring you right back down to earth. The doctor was quick to say that Luke's next year in school would determine how well he will do in understanding "abstract" concepts. Apparently in the fourth grade learning concepts switch from concrete to more abstract, and the key to Luke being able to live on his own will be how he can handle the abstract concept of money. Great...the last thing I want to think about right now is Luke living on his own, money, and abstract concepts. Whatever... Luke has proved his predictions wrong so far...I think I will just side with Luke and his ability to achieve the impossible.
Sunday, January 22, 2012
Snow Day, Car Accident and Crafts
We had a bit of winter weather this past week and the kids had a "snow day". It was a perfect snow day...snow was out in the morning and gone by the afternoon. We had fun visiting with some friends at their house and hanging out that afternoon. Bella had her first experience out in the snow. She thought the best part of the snow was scooting around in her boots. The snow was really wet, so it created a big mess and she really didn't want to have anything to do with it.
The same day as the snow, Mark got into a car accident. We are SO thankful that no one was hurt (except the car). Currently, the car is in the shop getting repaired. We are also thankful that we have the truck to drive so that we don't need to have a rental. I know Mark felt really bad about the accident, but stuff happens and that is why we have insurance. Cars are just things but people are important.
Mark is getting ready to head back out to the road on the railroad and I am gearing up to take on the kiddos while he works a crazy schedule. We are thinking about upgrading our 1992 TV this month. :) We have the oldest TV and is must weigh 300 pounds. This was my parents TV and back in the day it was awesome! Now...not so much. I honestly would just like to see the whole picture now that everything is formatted in wide screen. We often miss words because we don't have a wide screen. Oh well...not in a rush, but this purchase is definitely on our minds. When we do replace it my mother will be so relieved. She calls our TV "the death trap." Hehehe. It has worked well and blessed us all these years. We are slowly coming into the electronics era. My brother Dave, is the electronics guy. He has every gadget you can think of. Me...not so much. This year we finally purchased our first laptop (which I LOVE)! And I got a new digital camera (Nikon SLR). Yesterday, a NOOK Simple Touch joined our family. While my son has used it more than me...I can't wait to enjoy the technology of this new ereader. Luke already has it figured out! This coming from a gal that didn't have her first e-mail account until I was out of high school (1997). So I am enjoying some of the new gadgets we have in this electronics world.
Lastly...I have been having some fun doing a few crafts these days. Today I created Valentine Felt Fortune Cookies for my kiddos. The suspense is killing them and they can't wait to dive in. It is a count down to Valentine's Day. The RED fortune cookies are for Luke and the PINK ones are for Grace. When Bella gets bigger I will add WHITE one's for her. Starting February 1, they will pick one "cookie" a day and open it up and read the "fortune" or scripture that tells them about Jesus' love for them or an attribute/blessing that we (Mark and I) love about them. All 28 of the cookies are different so they can share with each other and the plan is that it will lead to some good conversations. I am really trying to get the kids to open up and really start talking about the important things. If you are interested in getting some felt valentine's cookies for yourself or someone you LOVE....visit my ETSY shop Dahlhouse Design. Or it you want to know how to make them yourself they are super fun! I would LOVE to let you know how.
Friday, January 13, 2012
Failure
I admit it...I cried...more than once. Maybe it was the lack of sleep, or the loneliness I sometimes feel or the fact I haven't had a minute to myself this week, but I think the weight of the issues and the needs my kids have, left me feeling heavy, tired and weak. The burden I carry for them, the angst I feel for them as I "let go" of them little by little, the understanding I have over there history, adoption and special needs, left me reeling. That little voice, the one that creeps in the midst of weakness, the one that can overpower all reason and logic, that says you are not good enough. You will never be able to meet all their needs. It is too much for one person. What makes you think you can raise them well? The voice that says you are a failure. I felt like a failure. Sometimes they need so much, and my two arms are stretched out as far as I can reach, and I often come up short.
I question..."am I doing everything I can for them?" "Do they need more?" "How can I help Grace read better?" "Is Luke doing his homework?" "Did Bella put something in her mouth she can choke on? Where is Bella?" "Does Grace need to be evaluated for special services at school? Do I wait, do I proceed? How best do I advocate for their needs?" It is never ending.
It leaves my head spinning, and me sitting here re-evaluating everything in my life. Do I take on too much? Is there things I can give up? What do I really want for my kids?
And then...before the realm of panic sets in.... that voice, the voice that speaks peace, calms fears and quiets the soul becomes clear. "YOU are the one I choose for these children. YOU are the mama I had in mind when I created each one of them. YOU are MORE than enough. YOU need to rest in MY STRENGTH not your human strength. This is MY plan for you. YOU are NOT a FAILURE." And then...I CAN breathe. I can dry my tears and start back in where I left off. Picking up toys...oh the toys...washing laundry, washing dishes, washing faces, washing away the world and building back up 3 precious babes so they can go back out into the WORLD and the process can start all over again. And I am reminded that despite the trial and the days I feel as though I failed...I wouldn't trade any of it. The journey is challenging but the rewards are great...as I face difficulties it challenges me, inspires me and changes me...for the better.
"My life is being poured out as a part of the sacrifice and service [I offer to God] for your faith. Yet, I am filled with joy, and I share that joy with all of you." Philippians 2:17
1 Corinthians 1:27 ..."and God has chosen the weak things of the world to put to shame the things which are mighty."
Monday, January 9, 2012
Ok...time for Updates...
It's been awhile since I have given any updates on everyone...so I was thinking it was about time! When we returned from Hawaii we hit the ground running with Christmas around the corner...well not much time for blogging about things.
Overall, life is going very well. We are happy and healthy and the kids have returned to there normal routine of school and after school activities. Bella and I have resumed our days hanging out with each other.
Mark is working in the BNSF yard currently. He is working RCO (which means he is running the trains with remote controls). Mark will be moving back out to the road here shortly and begin making his trips to Pasco, WA and back. Mark is still serving as a deacon board member at our church. He always finds time to play with his kids...they become more and more of his free time. He is always willing to give me a break and we have even found time for a couple of dates as of recently! Yay for movie gift cards!
Luke is doing really well. We are happy to report that his eyes have stabilized and we are back to 3 month appointments at Casey Eye instead of every 6 weeks. It is still a watch and wait game, but I am at PEACE, and I am ready to accept whatever God might have for Luke regarding his eyes. The end of this month will see Luke having another genetic appointment at Legacy and an Ortho appointment. Luke is busy with Karate...We have a new purple belt and he advanced to the intermediate class! He continues to do iLs and it has helped him so tremendously. He is reading and writing at grade level!
Grace is hysterical...she is doing well. However she did not want to return to school after Christmas break. She told me that she wanted to stay home and watch TV "as a family" she added. Grace had a great report card this past trimester. She continues to improve in reading and she is doing the iLs as well. Grace is dancing every Wednesday afternoon. She is dancing ballet and tapping away! She will have a big Showcase in June. Grace enjoys playing well Bella more and more these days. I often find Grace "mothering" her. It is so cute!
Bella is talking and blabbering a lot! I can hardly believe that my little baby is going to be 2 in March! Oh hurt my heart that she is growing up so quickly. Bella is so funny and keeps me laughing. She absolutely hates the vacuum and whenever she sees it or passes by it she says, "no, no, no". Bella loves to play the copy cat game with you. She has all these funny little faces and moves that she does so that you will copy her. The girl is obsessed with the bus and ELMO. All my kiddos went through the ELMO phase and Bella is no exception. She has a little stuffed Elmo that she got for Christmas and she sleeps with it every night.
I am doing well. I am about ready to close up on a mentoring case that I have had since August. I have had a couple of substitute jobs which have been fun little days out in the "real world". The kids keep me hopping with all the activities and such. I also am trying to start a little small bow making business. Thanks to my great sis Katie for the encouragement, I am selling my handmade girls bows. I will share more about that in the coming days. God has also been doing a work in my heart, and I continue to seek His will and direction for all He is speaking and showing to me. Blessings in the new year!
Overall, life is going very well. We are happy and healthy and the kids have returned to there normal routine of school and after school activities. Bella and I have resumed our days hanging out with each other.
Mark is working in the BNSF yard currently. He is working RCO (which means he is running the trains with remote controls). Mark will be moving back out to the road here shortly and begin making his trips to Pasco, WA and back. Mark is still serving as a deacon board member at our church. He always finds time to play with his kids...they become more and more of his free time. He is always willing to give me a break and we have even found time for a couple of dates as of recently! Yay for movie gift cards!
Luke is doing really well. We are happy to report that his eyes have stabilized and we are back to 3 month appointments at Casey Eye instead of every 6 weeks. It is still a watch and wait game, but I am at PEACE, and I am ready to accept whatever God might have for Luke regarding his eyes. The end of this month will see Luke having another genetic appointment at Legacy and an Ortho appointment. Luke is busy with Karate...We have a new purple belt and he advanced to the intermediate class! He continues to do iLs and it has helped him so tremendously. He is reading and writing at grade level!
Grace is hysterical...she is doing well. However she did not want to return to school after Christmas break. She told me that she wanted to stay home and watch TV "as a family" she added. Grace had a great report card this past trimester. She continues to improve in reading and she is doing the iLs as well. Grace is dancing every Wednesday afternoon. She is dancing ballet and tapping away! She will have a big Showcase in June. Grace enjoys playing well Bella more and more these days. I often find Grace "mothering" her. It is so cute!
Bella is talking and blabbering a lot! I can hardly believe that my little baby is going to be 2 in March! Oh hurt my heart that she is growing up so quickly. Bella is so funny and keeps me laughing. She absolutely hates the vacuum and whenever she sees it or passes by it she says, "no, no, no". Bella loves to play the copy cat game with you. She has all these funny little faces and moves that she does so that you will copy her. The girl is obsessed with the bus and ELMO. All my kiddos went through the ELMO phase and Bella is no exception. She has a little stuffed Elmo that she got for Christmas and she sleeps with it every night.
I am doing well. I am about ready to close up on a mentoring case that I have had since August. I have had a couple of substitute jobs which have been fun little days out in the "real world". The kids keep me hopping with all the activities and such. I also am trying to start a little small bow making business. Thanks to my great sis Katie for the encouragement, I am selling my handmade girls bows. I will share more about that in the coming days. God has also been doing a work in my heart, and I continue to seek His will and direction for all He is speaking and showing to me. Blessings in the new year!
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